It could be worse.  I could be in my late forty’s still trying to be a teenager.  I would hate to be one of those guys who just doesn’t look like they belong because they don’t act their age.  I knew those people when I was in high school…we called them buyers lol.

Nope I will age gracefully kicking and screaming the whole way.

So anyhow, I will be starting back up with PT after a 2 week break.  I’ll continue working out daily.

The Walkaide is still doing a great job.  I try to walk w/o it occasionally to see if the foot drop has gone away at all but I only end up tripping or using way way way to much energy.  I still need it for sure and am glad I got it still.

I got another MRI report on Thursday.  No activity and the disease in complete remission.  Now thats a great birthday present.

I did the presentation for all the PT people.  I was able to make a video and talk about the treatment and the Walkaide.  I told them about the exercise option and the beep on stim.  I was talking with a cuople of them the other day and I told them how it used to throw me off when the MS was still raging.  I also was able to explain how it helped to stop the atrophy.

I took today off from PT and I don’t feel bad.  I’mpooped and sore and I am going to deserve a well deserved weekend.

I have to make sure they have my medicare stuff right because I got a feeling I am about to take a good chunk of change right to the pocket book.

Even if I ran out of medicare they have whats called “independent pool” and it’s 5 dollars for an hour I believe.  I can always keep my therapy myself and I will just become 100% aqua therapy.

I am going to make an appointment this week in Califonia to look into the Chronic Cerebralspinal Venous Insufficiency.  There is a doctor in Italy who thinks he may haver found a correlation between MS and an issue with the Azygous Vein and Jugulars actually draining the blood out of your brain and spinal colum creating a backflow which could create the pressure difference which in turn could create the Blood Brain Barrier breach.   It seems if they clear these blocks, or open these skinny veins, some people are experiencing some improvement in symptoms especially with heat.  There is a doctor who is following up on his work in the states and I figure if I have an issue I might as well get it fixed.

I wonder if this vein issue and the BBB being breached is the antagonist of MS?  I can totally understand the body not being able to understand the issue and starting an autoimmune response.  So I have the Autoimmune side of the MS done so I might as well as get this done too.

I really want to take some footage of how I am walking but this weather isn’t condusive to it lately and unless I can wear shorts I don’t want to do it because I want people to see me walking with my Walkaide.

I am doing a presentation to show myself off to the entire PT staff at Anschutz.  Everyone seems amazed at how well I am doing.  I’m not.

Everyone seems to think I may run again.  I just want to be able to live healthy and finish up any loose ends I still have from when I still had MS.

No matter how you slice it my life is better now than I ever thought it could be - especially in the Winter of 2007.

In PT I actually made a running motion in the water this week.  I had to hold onto the bars but I was able to do it.  I am also able to march in the water as well.  It’s truly amazing.

BTW - Standard Insurance, specifically Michelle, it does not mean I can work.  Sad I have to disclaimer myself lol.

At church last week my Pastor and a few other people said I was walking better.

I am glad I had the Walkaide to keep my leg muscles from atrophy or it wouldn’t be going this well.

Sorry folks but it just blows my mind that in Fecruary of 2007 I couldn’t stand up barely, I couldn’t pee normally and had to sit because I couldn’t stand that long, had to shower sitting, took 4 hours of naps a day, wore glasses, had sever cognitive issues, mood swings,  suffered from tremors, suffered from severe spasticity, and was patiently waiting to die because I was so depressed.  Today, I can stand up with my eyes closed, my bladder works great and my urgency is improving because I am working on it, -oh I stand again to pee lol, I stand in the shower, rarely take a nap even if I am tired, no longer use glasses, have no issues remembering anything now, mood swings have stopped, still pop of a twitch every so often( 1 or 2 per 2 week period) but not daily for hours at a time, spasticity has let up but is still there but it allows me to walk and stand now, and am happy to say I am patiently waiting for Monday so I can continue to improve and live my life.

Wow am I glad God helped me find Dr. Kerr by putting Brett there for me.

Here is where I worry…on Saturday night I woke up having to go pee.  I drink enough fluids its no suprise.  I had my laptop sitting under the bed but I had the cord out farther from under my bed than I thought.  When I got up my right foot caught the cord and I went rib cage first onto the metal foot board of my bed.  No brace or nothing.  Straight walking to falling flat on my face to oh crap there is a metal object in my ribs stopping my free fall.  I saw thirty shades of colors.  It knocked the wind out of me.  I was sure I broke them.  I couldn’t breath or anything.  Sunday they were really sore, but Mon, they seem ok except for really sore.  There is no more sharp pain.  I do worry I may not be able to do some of the stuff I have been doing in PT.  As some of you know, you hurt your ribs and it’s hard to do anything.

I do walk though.  I will have some video of me crusing up and down my driveway with my Walkaide on.  If I would have had the thing on at 2:30 in the morning when I nosedived, well, I wouldn’t have nose dived.

Till next week.

I think the once every two week post I will use is me walking up and down my driveway.  The incline kills me…again glad for the Walkaide…but I think if I am improving that will be the way to show it.

Just keeping looking on youtube for me.  It saves me server space.

I’m scared to death if I’m walking better if the insurance company will automatically think I can work.  I wish some one there understood what MS is because there Neuro’s are morons.  I just think any improvements are too important not to show.

Well, till next week!

Standard Insurance is totally stupid. They put me through 5 months of hell just to tell me I still have MS. Their doctors are dumb enough to think lesions and disability coralate. Just because I have healing lesions doesn’t mean I am ready to go back to work lol. Ummm PPMS doesn’t even have lesions. Believe me, if I could work I would. So if you are watching…I’m not faking Standard lol!

I do have a full time job. I go to PT 5 times per week. 3 in water 2 on land. I am actually getting stronger and they say there is a 3-1 ratio. What I can do in water now they say I should be able to do on land in 3 months. We’ll see!! All I know is I’m exhausted! lol.

I am going to start walking and keeping a video record of it. I figure once every two weeks or so. The Walkaide is a lifesaver because I really want to walk but if I didn’t have that I couldn’t move. I hope in September we can look at 6 months of improvements.

It is unfortunate that we are going to have to stop updating this website because Standard Insurance is using it against us on Chris’ long-term disability claim. I agree the HiCy procedure did work. Chris did get better but the part they don’t understand is that Chris’ disability level is not even close to where he was when he had to stop working. Chris tried to get his employer to make concessions so that he could keep on working, mainly from home, and they did not want to work with him. The past 2 years he has been at home his condition has declined rapidly, especially in the months right before he went in for treatment. Yes, HiCy did work, it leveled out his disability and actually did improve some things, but again he is at no point where he would even be able to perform a part-time job. He has a hard enough time doing household chores. I cannot imagine him being able to keep a job for any length of time given his condition. It is very unfortunate that Standard Insurance came to this site for information before contacting us or any of Chris’ doctors.

As some of you may have heard, Chris had one active lesion on his most recent brain MRI last month (see below). We saw it as we were leaving the MRI room, clear as day on one of the films – a bright white speck about the size of a pencil eraser. At first, we were devastated - HiCy was our last ditch hope, so now what? Retreat with HiCy? We went back to JH on Dec 3rd for Chris’ 9 month follow-up appointment where they confirmed the active lesion but told us not to give up hope. Dr. Kerr told us that some people had popped off a lesion or two after HiCy but they cleared up on their own. We are optimistic that this will be the case with Chris as well.

Chris actually performed better than last time on the peg test; he had been working on improving the strength of his hands with exercisers and stress balls. He didn’t do as well on the math test, mainly because he got behind and was never able to get caught up. Hell, even I have a hard time keeping up with that awful math test! Dr. Hammond had Chris close his eyes and had to tell him which direction he was moving his big toe – up or down. Chris got 100% on both feet for that test! He actually has improved in that aspect. Chris is now able to use his toes for balance where before he couldn’t feel them!

Chris is going to continue to take his daily Copaxone injections. In addition, he asked Dr. Kerr if he could be put back on LDN, which he did fairly well with before he stopped taking it to get into the HiCy protocol. He has another MRI to be done in March to see where he is at. If he is stable we may just hold off on retreating him with HiCy. We are keeping other options open as well. There are many other promising treatments out there for MS. Come March Chris will be covered by Medicare and things may cost us a bit less to do, as of right now we are drowning in debt due to these medical bills. In our minds we have won. HiCy killed off the MS and actually let Chris improve. We can handle this now; it isn’t a steady and rapid decline of his ability anymore. Besides, lesions are not an accurate representation of disability. If he can have a lesion without the disability, we’ll take that!

Chris has also started on 4-aminopyridine to try to improve his spacticity and the transmission of nerve impulses. Other than some initial dizziness, the drug seems to be working well. The compounding pharmacist is going to make it next time so it is more of a time-released formula to help Chris with some of the side-affects, like dizziness.

I have to say, over the last few months Chris has been almost obsessed with reactivating or getting some other kind of major illness. I am a strong believer in mind over matter, if you can convince yourself you are sick, you will start experiencing symptoms even if you are not. (This guy tends to think along te same lines. Read his book, The Biology of Belief if you can.) I wish he could have just enjoyed the time he had while his MS was in remission instead of making himself worried sick. I guess you don’t really appreciate things until they are gone. I think Chris is kicking himself now, he could have enjoyed the past few months a lot more if he wasn’t constantly worrying.

Chris and I remain hopeful and optimistic of our future. If some of the best Doctors in the country (and the world) think we should be I am not one to argue. We will keep the faith, because we know that God can perform miracles every day, even where medical science fails.

I just want to say one more thing: thank you all! The outpouring of encouragement, prayers, and kind words we have received in the course of the year has been what has kept us going through these tough times. Thank you again so much! Please keep us in your thoughts and prayers. I ask you to please join me in this prayer for Chris: (taken and modified from allaboutprayer.org)

“Heavenly Father, You are intimately aware of the struggle Chris is experiencing — the pain and the despair. You know the desire of our hearts for him to be healed of this illness. I ask now for Your healing touch. I know that You are able and that just like in Bible times, You can heal us.

“I also understand that You will chose what is best for us. I pray that through this trial, we will draw close to You — that You will be our comfort and strength. I pray that ultimately, whatever happens, You will be glorified through us. I pray this in Jesus’ name, amen.”

Again, thank you all for your support and kind words!!

Chenell

P.S. After much debate, I am going to keep the “Had” on the website. You may think it’s false advertising or that it’s crazy but the Bible states that we shall call things as how we want them to be, not as how they are. I am sorry I am not good enough to remember what book that quote came from.

I now get to fight with them with a team of my doctors to prove to them I am still disabled.  I am sorry but if anything good happens to me you will never hear another word.

Please feel free to let Nicole Wolf at the Standard Insurance company just how great they are.

Thanks to everyone but this site is now dead.

First I need to tell you all I am going to try some 4-AP to see how it helps.  I’m curious so I said why not.  I’m telling you all in Colorado, and maybe if you are nearby it may be worth it, but the MS Clinic at the Anchutz Campus in Aurora with Dr. Corboy and Volmers is something else.  Top notch.

I had a call from Doc Hammond seeing how I was doing.  I told him about all the twitching and stuff.  He reminded me it’s very early.  He did tell me they really have no idea when or if the magic light will ever come on and it will become easy.  However we did establish I am as good 9 months after the treatment as I was 9 months before.  I’m just getting better at the same rate I got worse.

This is the wild part…I mentioned that my PT had ran out and I was walking like a old man a bit again.  He was bummed the PT had ran out because of how well I was doing.  Then he explained in MS and TM they seem to see a trend where whatever you gain in a month you will loose in a week and go back to where you were a month before.  In other words if you don’t keep working at the rehab and hard, the body goes back further.  Now the body will remember, because the MS is dead I guess, but it’s been so long since it’s had to listen to a muscle memory and it doesn’t have a bunch of them built up.  So I need to work extra hard at the neurological stuff to get it to stick.  It will stick, and it is sticking henceforth I am better, but I need to bust ass to stay that way.  They don’t know when I can stop busting ass, but I will be healthy as an Ox in the process.

So anyhow the twitching is done and true to form, I am better than before in ways.  I can now life my leg up two stairs at a time.  All day anytime for the most part unless I have been walking a bunch.  I have really started working on leg strengthening and flexibility.  I had no idea I needed to do it more until I walked upstairs from the dryer the other day.  I was shocked.

I can’t wait until January because the knee is pretty much done hurting unless I over do it.  Dr.Kerr and Hammond will be getting me a script for PT to actually teach me how to walk again.  I have the leg strength and now I need balance and gait training.

By the grace of God I’m going to walk without a cane again.  How cool is that?

**I wieghed myself today and I am happy to say in 8 months I have dropped 20 lbs exactly.  My highest weight when I was in my worse shape was 181.  I am now 161.  Muscular and not fat!!  I’ll take pics sooner or later and we will have some video coming of me at a Walkaide inservice I just did.  I had to get up and walk around.**

It was great.  Chenell and I had a 5 star restaurant all to ourselves except for one other couple.  We had the biggest booth in the place in a corner all to ourselves.  No rush or MS or anything.  Just us.

After awhile friends showed up and we partied like it was 99, not just 9 lol!.  Well maybe not that HARD lol.

So anyhow, an absolutely great 100% awesome weekend.

Lets talk about how unbelievably kick ass last Tuesday at 9pm was?  I was so happy who my new President is.  Now that Obama is in office one of the first things the dems want to do is overturn a couple of the Bush veto’s concerning Stem Cells.  So lets hope within the next 6 months that is overturned passed and done with so one more thing that man has done can be forgotten.

Oh that man.  I hate him.  Literally.  Both times this nation voted for that jack ass I sat back and watched.  I hate to say I told you so but I predicited all this in 2005 and no one believed me.  You cannot take care of rich people and expect the middle class to survive.  You cannot take rules away because the old adage “when the cats away the mice will play” holds true.  I would love to see how much his whacked out of mind “Christian Conservative” ( term used sooo looosely) ass has made in money over the last 8 years.  So he destroyed our nation in 8 years.  I bet he made a fortune doing it.

I’m glad this is my site because I can say this too….when I saw 3 different news channels and a top Republican refer to their party as a non viable national party I was so happy I could have cried.  Maybe if we are lucky another Republican will never grace the Oval office.  Reagen, Clinton, Bush 1, Clinton, Bush 2, Clinton, 80 billion surplus, 3 trillion dollar deficit.  Small government yet it costs more? Smaller government make the rich richer so of course the republicans like it.

I had a Christian conservative tell me he was voting for McCain because of those reasons.  I then asked him why it is Christian for the poor to expect the Republicans to help them, where the Democrats create social programs to help their fellow brother out.  Also I believe cheating on your wife numerous times and then marrying a rich chic doesn’t qualify you as a model Christian.  They had no answer.  In fact I pissed them off.

I am so happy with the way our Gov’t will be in 2 months lol.

So I had an moment of brilliance the other day.  My PT as some of you may know, has ran out for the year which really sux.  I was getting to a place where things were going great and I had to quit.  So I have been waiting for January.  The I went on to www.youtube.com  Did you know you can find video examples of damn near every exercise Rx’d?  So now I have started to do the stuff on there as well as the stuff that is still hard the docs gave me.  I truly believe you must work at it. (Damn it…I want a break lol)

So more working out and more rehab.  Ugh.  At least Ahhhhhh-nold has a cool accent with all his working out.

So tonight Chenell and I are having a party.  Last year we had one as some of you may remember, I know for a fact one of you does for sure.

We are getting a hotel suite and Chenell is getting a few of her friends to come over and we are going to rip it up.  All I have to say is this years party is going to go much much much much much much much better for my wife and I this year.  Especially me!  LOL  I can’t frigging wait.  I deserve this lol.

Last year I was in such bad shape my wife had to kind of party with herself.  I mean she was definitely a great host!  Ask the guests!  However I couldn’t walk, wake up, or pee right so I wasn’t to much fun.  I’m glad she had a good time though even if it was far less fun than she deserved.  Sometimes you got to take what you can get though.

Well this year now that I am getting better she has went and thrown me a party tonight to welcome me back to “being me”!  I really need this and my dirty ‘ol man ass is going to have a blast!!

I had a bit of a freak out a while back because my twitches and fascilations came back a bit.  Then my dumb ass decided to head online and in the process I started reading about ALS and I freaked myslef out .  Imagine that horrid disease.   Thank God it was MS and not that.  I hope and pray they figure that horrid horrid disease out.

So everything is feeling better again and once again, I had this little period of sucky time, but now I feel better than I did before.

I love how my mind is working again.  My wife used to do all the finances because I couldn’t mentally understand it.  I have started to do them now.  I used to also have a real impulsive personality.  Almost Bi-Polar.  Not anymore.  In fact since I have started to do the bills, and I don’t do dumb shit anymore, our debt is going away.  I damn near have JH paid off!

I’m still suffering from some serious anxiety though but it’s all medically related.  Every twitch or sore muscle I am scared the shit is back or it’s something else.  I started to take some Ativan and it’s doing wonders and I have a appointmet with a shrink to get more.

I have found out that feeling like I do is very common for folk who live thorugh a horrid experiencne.  It may be wise for anyone doing this and getting better to seek some psychiatric help.  I’m not crazy, just a healing brain can be unbalanced.

So anyhow, as Peter from Family Guy says, “Tonight we are going to party like it’s 9!”

I truly hope I have inspired many of you.� I received an email from someone in Belgium ready to hop on a plane tomorrow and he says it’s because of me.� I hear all the time how I am courageous and a champion for medicine.� I admit I was scared and did something that made sense.� I will never admit to any other tag than motivated and scared.

I also say to you who prefer to sit on the fence and watch and want to see me fail….thbbbbbbbbbbbbbppppppppppppppttttttttttttttt!!!!� I get better everyday and you are my motivation.� There is a mother hen on one forum and a flying witch on another I speak of mostly on the internet…but a couple of folks who actually know me feel this way too.� I thrive on the adversity…it gives me more of a reason to walk when I am tired, stretch when I am sore, or to do one more push up when I am weak.

In the last 2 weeks I am now 4k poorer because I had a cat get bladder crystals and stones and needed PU surgery.� I have had a million things happen to me at once and it finally dawned on me…I need a break.

So no offense folks, I’m becoming really limited website wise over the next month I think.� We will see how it goes but in all honesty I feel like if a kid died in Africa I would feel his parents grief right now.� I have read sooooo many bad stories of MS grief and tragedy and in all honestly some folks can’t get better and it drives me nuts.� I may be having a touch of survivors guilt.

It’s all good folks if you still want to email me and such, just gimme a bit to get back.�� Thanks for everything folks really!!� I just gotta take a step back for a bit…it could be next week or next month when I get back but Chenell will say something still.

Here is something good to look at that should make you all smile…

http://www.accentia.net/science/revimmune.php

We went to a preseason game last week and we forgot the camera.� I left the wheel chair at home and I walked my slow ass to the suite, and to the bathrooms, and where ever I needed to go.� It’s the first time I left my wheelchair home like that in 2 years.� I am still slow but I didn’t NEEEED it.

Second, we figured out where my wife got sick.� I brought it home to her!� A friend of ours she has not seen but I have had the same thing when I saw him.� So just so all the nay sayers know…my immune system is back and kicking butt!!

Well we are at 7 months now and all I got to say is thank God I did HiCy.� I feel better.� My MRI’s show I’m getting better.

I am taking care of my wife while she is sick.� I am not sick.

I love it.

Unfortunately, I think I am giving this to him as we speak so his transformation into large man-child is eminent. Men become even larger babies than us women when they are sick. Right now I will just enjoy the fact that he can take care of me. For the last few years I was pretty much on my own.

I just wanted to write a quick post to let you know the good news. I am going back to bed now.

Chenell

I was the person perfectly happy.� I waited to long to do something and this is what I am now.� Nothing.� A gimp.� It’s my own fault because I waited until 2004.

Now there are treatments everywhere to stop this and some people are actually dumb enough to say to me, “Oh I think I’ll wait to try something.� I feel fine.”

OK, you wait, see what happens.� Watch my videos to know what happens to those who wait to long.

You are trying and I applaud you.� You at least are exercising options.�� I have no respect for those who get cancer and don’t get a second opinion.� If they say you are going to die what have you got to loose?� You try other things.

The only thing this disease is going to give you is disability and thats it.� It’s gaurantee’d.� What have you got to loose?� Every person out there with a active lesion in their heads just be doing this.� No reason I am getting better and others are not.� Just my opinion.� You may get sick for a week.� But then again after that week you may be like Davis, Mel, Sandy, Kathy, Me and etc.

So others who have MS would rather yell at me in emails about how I have helped others get this.

Most of these folks I speak of are people who are the select few who are in a loosing battle and still won’t admit they need to try something else.� Some folks still won’t admit what they are trying is loosing.

So again I use the cancer analogy.�� If you have cancer and are dying anyhow what have you got to loose?�� If you are guaranteed to become a cripple, rather than sitting there accepting, why not try something else?

Also one person named Sandy and Rod (Sandy has MS) has had this disease for 22 years.� Go to www.thisisms.com in the Revimmune forum to see her results.� Age nor time seems to matter.

A reduction in new lesions is a wonderful treatment.� I want no lesions and the ones I have getting better.� I got it.

JH and Rush both go to war against the insurance company.� I had to wait 6 weeks for the battle to be won but they did win.� Let them get it cleared for insurance.� If they said no, contact all of us who have had the treatment and get us to help.� We will help for sure!!

The good Lord helps those who helps themselves.

This guy Bob showed me the clip that got me interested.� This guy named HiCy in a forum told me to contact JH.� I was the one who did the work from that point.� If insurance said no I was going to try again just with a butt load of information I’m providing.� I’m sure JH showed them all of it but I was going to as well.

No offense folks but if you want to ask me questions as to why I write stuff on my site it’s OK.� I can assure you there is a reason I say what I do. Don’t chew my ass on my site.� Ask it to me. I didn’t go through a childhood involving watching one parent try to commit suicide, 8 years of cocaine and meth addiction, and 10 years of MS to sugar coat anything.� I am happy to say all my demons from the past except one is gone and I am free minded.� If you don’t like the fact I am honest and blunt tough.� If you want nice in some of these cases you best go talk to the mirror because unfortunately some subject matter gets me riled up.

I look forward to all of you one day having what I have had and experiencing what I am.� It thrills me to know there is something out there that really does provide one of the three cures we all seek.� It pisses me off everyone of you doesn’t have this yet, but alas, it will be soon.

Beware, it wrecks your hair but improves your quality of life!

Sorry you have� cancer.� Here is some known chemo that will get rid of it.� Go and try some clinical trial or holistic drug.� Then you can be pissed as hell when you die.

Here is some chemo for MS.� Go and try some clinical trial or holistic drugs. Wait and see what happens.� Wait till you can’t move because your body finally kaiboshed you once hard core like me and you never get it back.

It is everyone’s choice but to me it’s not much different than praying to God for a broken arm to magically heal when you are sitting in the hospital parking lot.� Didn’t God make doctors too?

Would you wait until your cancer was too bad to get treated?

Excuse my french and Grandma I’m sorry…fucking stupid

I hear of these other folks who are walking better and I find myself kind of jealous.� Don’t get me wrong, I am definitely doing much better, and I am soooo happy for those folks, but for me it’s so slow it and very frustrating for me.� I feel like Sig in the wheel house screaming about crab counts only “I want Myelin now!” in my crab boat.

Well, I guess I’ll keep plugging away…just so sick of it really.� I wish I would just wake up tomorrow and be able to walk worth a damn again but for 4 years I taught my body how to do it very, very, very wrong.� Reteaching is a bitch.

Gotta have a goal or God won’t help me out!

I am happy to report that Chris is still improving. Probably not quite as fast as he would like, but I keep reminding him to be patient and that healing and myelin repair takes time. I think that the carpal tunnel surgery may have slowed down his improvements a little but the body can only handle working on so much at one time. Now that his hand is healed up he’s right back on track.

I have seen a new life in Chris these days. A spark is back in his eyes. He now feels like a whole new world has opened up to him. He’s not afraid to go to the grocery store anymore by himself. He’s becoming more and more independent. I have found that now his mind is still limiting him, telling him he can’t do something. He says to himself: “Wait a minute, I CAN do that now! You don’t need to do it for me anymore.”

I have watched Chris walk farther nowadays than he has in months, maybe years. It may not be all at one shot but he practices walking the proper way even if it may take him a little longer. I know his knee is still bothering him and he actually managed to break one of the rivets in his knee brace. Without that brace he hasn’t been able to do as much as he’d like. Unfortunately he hasn’t been in physical therapy since his carpal tunnel surgery. He went in for a follow up with the orthopedic doctor and was left in the exam room for over an hour so he just left. We are still waiting on them to get us a referral to see someone at another facility AND the additional physical therapy had to be approved by the orthopedic guy. So that has been extremely frustrating. Chris tries to do some of the exercises they taught him around the house.

Since the carpal tunnel surgery Chris’ Bowflex workout regimen has been put on hold. He could not use the grips of the weights with the wound in his palm. He’s lost a bit of muscle tone but has since started back on the road to a Bowflex body.

Many of Chris’ improvements are things that normal people would take for granted. Sometimes we’ll just be sitting in bed and he is able to wiggle the toes and move his right foot. His skin sensations are all improving. He used to say how it felt like he was wearing latex gloves all the time, well that feeling is gone.

Chris continues to work on his arch nemesis: the stairs. He is not going for speed when he climbs them, he is trying to use proper form and actually lift his leg instead of swinging it. His hip flexor muscles had been pretty destroyed by the MS.

Chris is more active now than he has been for months… nearly a year I would say. He is able to help out around the house more than he has in a long time. He still can’t stand for too long because of his knee pain, but he actually has the energy to do these tasks. Especially since it has cooled down I have seen Chris out and about. I no longer have to run the errands after work or on the weekends, Chris can handle most of them on his own. The mental issues have all but disappeared. Chris’ short-term memory has had to have improved ten times. He can continue on a topic of conversation after being interrupted where as before he would completely forget what he was going to say.

Chris’ hair has come back but it is now very curly!! He has decided to keep it shaved since he doesn’t want to have a fro. He has also noticed that his leg hair is fuller and thicker than it has been since he was a teenager. I now no longer have hairier legs than his if I don’t shave, HA!

We have also noticed a few neurological signs of MS have improved and nearly gone away. Both his Hoffmann’s and Lhermitte’s signs are all but gone. This is a direct result of the lesion in Chris’ neck that is shrinking! I know a lot of you are skeptical about this procedure. I have scanned in Chris’ clinic reports from the initial visit with Dr. Kerr and the 3 month follow-up. I have highlighted in the first one: Chris’ major disabilities, his MS functional Composite (MSFC) and EDSS test results. In the 3 month follow-up report I have highlighted any changes in symptoms and his new and improved test scores. Notice the second report does not mention the cane being used in the timed walk. These are the actual Doctor reports form Dr. Kerr and Dr. Hammond in their entirety with only sensitive address and account information removed.

On another note, Chris is now somewhat famous. He was interviewed for an article for the Johns Hopkins Magazine, Wholly Hopkins. You can read the entire article, HiCy Relieves MS Symptoms, here. I e-mailed this article to pretty much everyone I know. One guy I used to do graphic design work for sent it on to the Colorado Chapter of the MS Society’s board members. She said she had indeed heard of the treatment and has invited us to a Research Reception on Tuesday evening. There is going to be a doctor there discussing the new treatments and other research that is being done for MS. Maybe they’ll involve Chris in some way. We have been trying to get the MS Society to listen to us for the past few months now, this may be our in!

I want to assure you guys, Chris is still getting better! This is definitely not an overnight process. Chris had a lot of damage, mainly muscle atrophy, from the MS. It is going to take time to retrain things to work properly and rebuild them to their former strength. I can’t wait to see the results of Chris’ next MRI. I know nothing but good things are ahead for us. The only limits Chris has are the ones he sets in his mind.

Keep fighting and keep hope alive everyone! This disease will soon be a thing of the past!!

Chenell

Keri you are a saint, watch out though that *&%$@ from that one forum (the airplane chic lol) will go after ya!

My wife did bring up to me the fact when my MS was still active and the lesions in my Temporal Lobe were more numerous I was a bear too so I will attribute her attitude to MS lol.

I noticed something last night that is really cool. The back of my right hand is feeling everything normally again. I no longer “have a glove on.”

My fatigue is gone from the heat. Fatigue used to always be there but I can safely say the 100 degree weather was the culprit. I’m back to awake all day again.

Bladder is normal. Bowel is Normal. Sleep normal.

Can’t drink to much. Every nerve issue is magnified by to much booze. Had to much the other night and my bladder was the size of a mustard seed. Lesson learned.

I’m going to need to re-time my Walkaide again because I am walking better. As I walk better and the muscles build it’s changing my gait so the device needs to keep up with my recovery.

–Do you have any clue how cool it is to go grocery shopping again? To walk into the store or doctors office?

Anyhow I hit 6 months out in September and the next post will be Chenell’s. She wants to put something up here. She is going to put up some pertinent medical stuff from my follow up reports. Namely how I have improved in everything related to the testing they do.

Keep on keeping on…

Chris

Now it seems like I can walk better than I could before I had the heat issues.� Not so much better but my endurance is much better.� I can stay standing to rest up after walking a distance.� I really don’t “need” to sit as much as I did.� I’m still slow but now I can go farther.� Also, my hamstring in my right leg is actually tightening when I walk and showing it’s being worked.� It used to be just soft fat all the time.� Now there is actual tough muscle in there.� ( GOD IS IT SMALL!!)

I can’t start working out with my upper body until next week or the week after.� It would hurt my hand.� This does not stop me from working those legs.� I walk like mad all over my house and as much as I can.� I still need to use the scooters at the grocery store but I am walking into the store.

I can - ugly as it may be because of my foot- go up the stairs and actually lift my leg to the next stair.� The foot is ugly but that was the first thing to go and the thing I really don’t expect to get back anytime soon. ( I won’t stop trying though)

**Footnote**

Chris Has MS

Chris Had MS.� I used to have MS.� The MS I had is dead.

The reason I use those words folks is because I am a firm believer that Joel Osteen is 100% right.� The reason God is working this wonder in me is because I am giving him the right avenues he needs to work.

God works on positive attitudes and faith.� None of these involves the words “what if”.� God always did the best work in those who did the best they could, lived the best lives they could, and let God reward them for their hard work.

I always maintained I needed to have MS because I had a lesson God needed to teach me.� I never once thought I would have MS forever and once I saw the Tovaxin trial, and the the other things going on for MS in medicine, I felt positive.� I was turned down for the Tovaxin trial but I never got pissy or anxious with God.� I knew he needed me to wait and to learn.� Then when I had learned what I needed to (oh the thousands of lessons) he had Brett contact me so I could finally loose this disease.

First of all folks we all need to thank God for the folks at JH and not HiCy.� OK do it for them both lol.

Second of all I believe to thank God for allowing us to get this chance it involves us busting our butts to get better.

Third, I believe that God doesn’t stop doing good things just because he helped you out once.� Even if you don’t get it all back there are plenty of things coming out that may fix the leftovers.� Let God fix it and you put yourself in the proper situations by working hard.

In conclusion…

There is only one way you will know how well HiCy worked and that will be 5 years from now.� The only thing you can do is bust your ass in the gym and in regular life doing everything you can to get better.� Let your body, or God say you will never get any better. Let the grave decide the time line you are willing to put towards the effort.

God never helps someone not working towards a goal. Always, always, have a goal.

Ba-bye

Before some of you start to freak: It’s because I was screwing around, tripped on a cat, and landed on the hand and tore a stitch about a week ago.� Either I did it then or in my sleep.

So no pain really, itches like mad, and makes it difficult to use the cane.� Other than that I now sleep perfectly.

Now the MS stuff……

Right now I am fine.� It’s 7:50 and it’s cool.� It got to 104 in Denver yesterday and I was in it with doc appointments at 3:00.� My house sucks (even with air, because of the sun and lack of thermal siding, we still hit 85 inside.� I also have three fish tanks in the house and a server farm.� It gets warm.� My fatigue comes back a little, gets harder to move, and just makes me feel really MS-ey.� Then I get into my car with the AC balsting, or the sun goes down and I am as good as I was before the heat and Carpel Tunnel hit me.� (The heat and surgery actually both happened within a few days of each other.� We are on day 21 of 90+ in a row, Wed is 21 days post op.)� So then I tried some evaporative cooling gear I have that I completely forgot about. Guess what…it worked!!� I feel much better all the time.

I will start working my legs out again on Mon.� I’ll call the folks at PT to setup my 20 appointments.� I want to work out the upper body but the hand is to sore still to grab onto anything for that intense a purpose.� I may need to wait another 3 weeks…which really sucks.

I was reading some stuff on HiCy and I also got an email from a friend who thought they may have reactivated.� It seems when you get this treatment there are a couple of ways to get better.� Some people feel worse for a year and then all of the sudden they start to feel better.� Some of the folk like me feel better right away but still have good times and bad times.� I think the biggest thing all us HiCy’ers need to remember is we just went through hell.� Just as when we heal from a Flu, there are times you feel good and times you need to take a break.� Please folks relax!� I get freaked still wondering if I reactivated.� I haven’t, well, I don’t think or expect it,� but I still let my mind run away from me.� BTW, that person hasn’t reactivated and is actually showing some early signs of healing as well.� It’s just normal to have good and bad times.� As far as I am concerned July and August are the worst of times.

So anyhow, I wish I had something interesting to say but I do not.� It’s Saturday and I have no clue what I am doing today but if it’s hot I can assure you my future has Ice Cream in it!

It cooled down yesterday afternoon for a bit and for the first time in a couple of days I felt better too. Keep in mind last summer at 80-85 degrees I was shot. It hit 100 downtown yesterday. I still felt good enough to go with my dog outside and play.

Here is a question for some of you: When you have the flu, do you feel better the minute the virus is dead? Here is another one: If you have cancer do you heal from it over night? A different question: When you have a car accident, if the accident isn’t happening anymore does it mean you didn’t have an accident at all?

OK, then why in the hell do some of you people expect me to be out running? Good God! I just went through 4 years, or maybe as many as 15 or more years of having my body torn to hell. Let me heal!! People are showing Myelin repair four years out and more from HiCy!! I am 4 friggin months out! Let me heal!

Yes I have MS damage. Yes I still have MS related issue’s.

Some of us who have gotten this and who may get it may need to get a grip.� Cure for some of us has got NOTHING to do with getting better.� I have gotten a bot better yes.� I may not get one itty bit better than I am but I am still better than I was.� I may have had the disease too long.

I believe good ‘ol HiCy is going to actually cause MS to be diag’d different now.� I also believe those with PPMS may not be considered MS anymore and may get their own disease named.

I believe when you first show symptoms and if this would have been done to all of us right away, before the disability set in, we would all be running again in no time.

The simple fact of the matter is I may never get one bit better than I am right now but the fact I know others will more than likely never get as bad as me is absolutely wonderful to feel.

Folks you can expect some degree of improvement…Chris S told me to tell you all his fatigue and heat sensitivity is gone too…from this treatment.� If you have had it to long their is a point that the improvements may stop.

If you have had this disease for a long time and had some disability set in for any amount of time, and you expect HiCy to make you like you were before MS got to you, you are going to be disappointed.� No, for all of us that don’t get all the way better ( and I don’t expect to ever be 100%), we need modern medicine to fix the rest and I bet it’s stem cell related.

Until then I still feel better and continue to do so everyday. Sorry to disappoint.

Heat sucks bad still. In Denver it has been roaring and I have sucked very very bad. I went to MD last week and the weather was so cool and I was sooooooo much better.

I had the surgery and the heat was 95+. Between the two I had MS all over again. Plus the left hand is my cane hand. I want to be better tomorrow but it’s quite obvious I am not. W/o that cane in my left hand, I can’t walk for a damn for very far. –Unless it’s night and I am cool.

I don’t think the body can handle more than one bad “traumatic thing” at a time. I don’t think my body knew I had Carpel Tunnel until the MS was gone. The worst was gone and it could then worry about the minor stuff. Kind of like if your hand hurts let me hit your toe…just at a bigger extent. Now that I have this hole in my hand my body is saying, “Whoa let’s let him feel like he has MS. We got this bigger issue to deal with now.”

I bet in a month I feel great again too.

They are getting geared up fro phase three trials…they are only doing this off label as of now. I assume all those used will be entered into the trial as well. If you qualify for treatment they will do it for you.

Call them and ask if you have questions.

OK the hand is a lot sore now lol. TTYL

IT WAS HOT!!

It didn’t really bother me!!

I went outside and played with my dog and he ran into the house before I was too hot. Heat would bother me fatigue wise. It would make everything on my body weigh more and it would put me to sleep.

I got done running him around then hopped into my car and drove to my hand surgeon. On Wednesday I have Carpel Tunnel Surgery. He says it will b about 4 to 6 week recovery time. It will be so good to sleep again! The pain is horrid! Back when the MS was active I couldn’t feel it…boy can I now!!!

I can’t wait to be forced to walk more without my cane. I use it in my left hand which will be operated on. I already started holding the cane only in my fingertips to learn how to walk again. I used to use it as a load bearing cane. Now I just won’t have it for two weeks. I hope it doesn’t turn into a two steps back thing. It also bugs me I won’t be able to lift weights for a couple of weeks…but my left side is more muscular because of the MS so maybe I can catch my right side up!! lol

So as you all will agree…no news is good news to report. Busting butt and not bothering to take the names.

He was readmitted for a LOW GRADE FEVER which is actually pretty normal but a PIA. I think he is actually back in IPOP unless it didn’t break on it’s own like mine did. It’s actually a good thing because he has a neutropenic fever more than likely and that means his body is going online. If it is a fever from a bug or infection they will wipe it out with IV meds.

As soon as I hear more I will pass it on. He wasn’t worried and I can tell you I’m not either.

–Oh I wanted to mention my excursions to the mailbox…the 100 yards or so…is actually getting easier. I find my legs wanting to move faster than my brain knows how to handle. I can’t wait until the two actually start to work together again!

The tiredness I used to have is gone now and I don’t even need to rest after walks either like I used too. I rest by standing in place rather than needing to immediately sit down. I still like a good sit though lol.

As you know my site is for only positive things. We talk about getting better here and how others are getting better from this as well.

I refuse to go to the MS forums to talk about HiCY anymore. It does not fit the criteria of “we don’t know” to be discussed there.

We know HiCy stops MS and allows lesions to heal. We know this. The people doing this are all seeing improvement in symptoms and the MRI spots and holes are going away / shrinking. We know this.

That is positive and is allowed to be talked about. The reason one of the other previous HiCy’ers isn’t posting up horrifying results is because there isn’t any!

This is so good it’s going straight to fast tracked phase three status.

It feels so good to be able to write the truth on my own site and not need to worry about getting yelled at for it!

Keep the faith folks the end is near!

Also I wanted to let you know I have started to talk to some business’s to see if they can help to defer some of your travel costs to those of you with less money doing this treatment. I am trying to get a few businesses I know to give me a monthly allotment / Sponsorship to donate to someone doing the treatment who could really use it to offset the costs.

It may start off as 50 bucks to help pay for a meal, but the hope its to get it up to enough to at least pay for a plane ticket to and from for the treatment. With gas today, I figure some folks may pay upwards of 700 bucks to get to Hopkins on a plane so I want to help.

So if you want to chip in please say hi so we can do all the legal stuff to let you!

**Update–Dave Albu with Ryder is In as our first committed contributer!!**

Look at the previous post to get the quick link to the MRI pics.

Ummmmm… what to say…

Chenell started a new job and likes it and its a real company! She got duped by signature wire as many of you know. This is a full bennies right off the bat minute you walk in kinda thing. Only issue is if we take these bennies it will start our deductible all over again so we may want to pay out of pocket instead of starting them before January. Time to crunch some numbers to see whats cheapest but that is much easier now. Now that HiCy is over the big money is really done being spent.

I can’t believe I almost forgot this… I get to have Carpel Tunnel Surgery. I have a moderately severe case in my left hand. I believe it is from my cane. I didn’t feel it until about a month after the HiCy treatment when I started to get the feeling back. LOL So sometimes not having feeling is a bonus! How the hell am I going to walk or wheel for that matter either? lol

Alrighty folks… gotta go… more sometime soon.

MRI COMPARISON SHOTS

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This is Chenell typing what Chris wants to say…

I am having to have my wife write this right now because I am a bit emotional. I will do a post on my own at a later time.

(as I type Chris is crying happy tears)

To all my friends, family, and everyone who has put up with me the last 20 years: I am sorry, it wasn’t really me (maybe). I have had stuff in my brain and I appologize. To all of you who have stuck with me and are still there: I am proud to announce to all of you that my MRI shows no new activity, no enhancing lesions, and a couple of existing lesions have started to shrink.

I/We won! We beat this bitch! If you guys don’t mind now I am going to concentrate on getting better. I no longer think of myself as sick, I am officially on the mend! Thanks, folks but if you are looking for any gloom around here you’ll have to go read the blogs of people on the CRAB drugs.

…

Chenell here, again. Dr. Kerr and Dr. Hammond both love the shirt and want some to give out to the patients’. Dr. Kerr got in to a little more of the history of HiCy which was interesting but we’ll go into that more later on. They were both thrilled (and maybe amazed?) to see how well Chris is doing in such a short time. They said his future is bright and the sky is the limit on just how well he’ll be doing in another 3 months and in the future. We promised Dr. Kerr before and after video of Chris to use in his lectures.

We are on our way home (tonight, actually) and the story of the whole actual trip is an event in itself to be discussed later.

We are so happy we are crying!! It’s a prayer answered for sure!! Well, many, many prayers not just one.
Chenell

Chris continues to be doing better and better. Don’t get me wrong, he still has some bad days. Chris’ custom brace finally came in for his knee. Chris is now walking around pain-free with the WalkAide and brace. The brace is a bit cumbersome but that is something he’s wiling to deal with to get better.

As part of Chris’ 3 month follow up he had to have an EKG, ECHO and an MRI of his brain and spine. We had no problems with the first two tests but faced a few minor setbacks when it came to the MRI. The first time he went in they didn’t have the work order. So we go that taken care of and he went in again. This time he was unable to handle the confined space of the MRI. So they recommended we try the open MRI. It is nice because it is open but it has the limitations of being slower. Chris decided he would take some of the Ativan he got for nasea because it is really an anti-anxiety drug. It worked for the most part but made him a bit fearless (scary drive there to say the least). They got about half of the tests done before they had to quit. It had been 3 hours and Chris’ back was killing him. This was Friday. So now we had to go back today to finish the MRI of the spine and the contrast scans. They started off on his back again and the tech asked if Chris could handle the closed MRI because it would be faster. We tried it again. The Ativan seems to help, plus having me there letting him know how much time was remaining in each scan tended to help him quite a bit. Chris was surprised to have freaked like that - he’s had maybe 6 or more MRIs in the course of his MS.

We got a disc and the films of the MRI. We had to look of course. We aren’t doctors so I am not going to post any of our speculations until the docs at JH get to review the films. Things do look go to say the least.

We have posted some new videos of Chris and his walking abilities here at three months. We plan to keep on posting videos at each follow up so you guys can really get an idea of Chris’ progress. I am also happy to say that I fixed the page with the videos from Sept 2006 that I accidentally saved over before. Now you can compare Chris to before Tovaxin when he really wasn’t too bad, to Feb of 2008 where he was at his worst to what he’s like now.

I am also happy to say we’ve added some new photos to Chris’ ‘Post HiCy’ photo album. As you can see he’s been keeping quite busy.

And people say there’s no such thing as miracles. Rubbish!

It’s late and we fly out tomorrow morning. Chris will be seeing Dr. Kerr at 4:30 on Wednesday and then we fly back Thursday afternoon. I am off to bed!

Maybe we’ll be seeing some of you soon!

Chenell

Chenell’s dad had his surgery on Fri night and that didn’t get done until 2 in the morning.  The hospital called during the operation to make sure they could give him contrast and blood because he started to bleed like mad. They ended up having to do some arterial graft. Then they couldn’t even do the hip job.  They say UCLA may need to do it and if they do it again they want a vascular guy there in room with them.

So then they woke him up with a tube in his throat which he wasn’t to impressed with. He would wake back up every 10 minutes forgetting where he was and trying to rip stuff out. They did have him strapped down.  Then they took the tube out but he was still so drugged up he was getting pissed at the nurses he was there!  In fact so much for a quiet weekend lol!  Chenell had to go down to the hospital at their request to sit with him or they were going to get a nurse to spend the night with him.  I really can’t take the risk of hanging out in an ICU yet with the whole immune system thing.

On a good note: I noticed I can now walk half a day without my Walkaide to correct the foot drop!!  I had the thing off and looked down and went, “It’s not on!”  and sat and wondered how long.  Now I can’t move the foot too much but it has stopped just falling like dead weight.  I may try the 25 foot walk in June without the cane but I still swagger like a drunk.  I can do 25 feet now on carpet but it’s not a straight line.

There was always this part of me that wanted a cop to take me out of the car when I was perfectly sober and ask me to walk a straight line.  I wanted it to happen just to be able to give him the smile I had planned lol. Would they let me use my cane or would they take it because it’s a weapon.  If I was here in Denver or Philly they may use it to beat my butt lol.
Rock on Walkaide and HiCy.

Keep the prayers coming for Chenell’s dad!  I still selfishly accept yours and appreciate them as well!!

It used to be just the Walkaide I had to talk about but now throw in some HiCy and wow!!

First and foremost the Walkaide is definitely rehabbing my leg quicker than I could do it alone.  I noticed it for sure the last 2 days because my lower leg did not -I repeat- did not cramp or spasm and I spent the larger portion of 3 hours on my feet walking.  I can hold that foot up by itself now much longer than in March.  The muscle is coming back now and my motion is much better too. (DAMN KNEE!!)  Talk to your PT or doctor about them.  Absolute lifesaver as I have reported for a while now.  Plus without me focusing on trying to lift my foot I can focus on my hip and butt muscles, keeping my leg straight the way it should be, and walking right.  When the rest of the leg plays ball I can worry more about the foot.  I had another woman tear up when she saw my foot work.  I know what I’m doing is important.

The response to HiCy was comical and sad and wonderful and just something to see.  I had people tell me that it was just a 4 year flare up ending and that was why I felt better.  I had people look at me like I was nuts.  I had folk who just didn’t believe me. Then I got up and walked and told them I was wheeled into JH.  Then they get more interested.  Some folk knew a good thing when they heard it but others just  didn’t by it.

I heard the next convention is in Atlanta and maybe I will be there walking better still.  I hope when the cane is gone they believe me then!!

Anyhow…I think we are going to go to Barr Lake and catch some fish.  Or maybe I will start to finish staining my deck.  I tried to do it last year but the heat really screwed with me.  Like I was saying before heat does still bug me a little. However without the fatigue the heat is much easier.

It feels sooooooooo good to look forward to weekends ( or the next day for that matter ) again!!

Chris knows he will upset some neurologists and lifetime MS’ers today but he is glad to do it. Sometimes the truth hurts. Neuro’s can be so pig headed and so can he so this should be fun. We’ll get some pics!

Also we have some photos and video we will be putting up around July 4th. We took some pics of what he looked like with MS on March 11th the day before his treatment. Wait till you see the difference! When some one says ‘You look so good’ to someone with MS it really is kind of an insult. I get why it bothered him now because he looks so different! The muscle tone and overall health he is getting without really trying too hard is amazing!

Chris’ leg muscles are sore. He is focusing on walking the right way and not the MS way and his leg muscles are killing him. His hip and butt are bugging him because it’s been a long time. His right leg and hip actually hang lower in the mirror because of the lack of muscles in that leg. It’s slow but it’s getting better. He’s a 100 times better than March so what will the future bring??!!

I wanted to tell you I have noticed Chris’s cognitive issues have gotten much better. I think he may be normal. Back in March his mind was so gone he couldn’t keep normal conversations. If he was interrupted at all he would forget what he was talking about. He would ramble in stories as well. All of that is gone for the most part. I noticed it the other day when we got bothered right in the middle of something by the phone. He talked on the phone and then actually remembered what we were talking about when he was done. Never in a million years 6 months ago.

His father who lives on the other side of town also mentioned that Chris is walking better. I’m with him everyday. I see a miracle everyday so it may not be so noticeable to me.

Chris was bummed to learn that if you use a cane or a brace you are automatically 6.0. He probably won’t have a EDSS drop on the 18th because of that fact. He wants to do the walk without help but we will see. He’s constantly working out something on his legs because he knows its pure muscle weakness stopping him.� As all of you know the knee! Patience!

My Dad gets a new hip on Fri! Go Dad and good luck! We love you!

So that’s this week or so in a nutshell. Nothing to report but the little bit of drama. So goes life. If it isn’t one thing it’s another! Chris is continuing to get better and we don’t mind!

Also, we are flattered to tell you we are going to hit a half a million hits in the next week or two. We are averaging close to 100k hits a month with 3000 new viewers per month. Chris hopes this site is inspirational and informative and thanks you all!

Thanks again for all the emails and well wishers but we are fine so chillax! Please don’t create any more issues for us! lol

Till next time.

Chenell

The first full week of physical therapy kicked Chris’ butt. His PT taught Chris a new exercise: squeezing your ass cheeks together like you’re trying to pinch off a #2. Those were her words, not mine. Chris had no idea how weak his butt muscles really are. The gluteus maximus is also responsible for keeping the knee and hip aligned. As per his request, he did exercises at PT that he wasn’t/couldn’t do at home. Including warming up on recumbent stair-stepper. Angela also had Chris working on balancing on a platform to strengthen his weak stabilizer muscles. Chris spent the rest of the day squeezing his butt cheeks together. So much so that he had to cancel his next appointment because he was too tired and sore! His next visit isn’t until Thursday so he’s had plenty of time to recover now.

Since he was so sore he’s been slacking a little on his home exercises. He has been doing them once a day when he can. We know it’s working because it is making him so sore. He’s also been sitting on an exercise ball and using it as a chair while watching tv. It works his stabilizer muscles while he would otherwise be sitting on his butt doing nothing.

Chris is also continuing his 3 times a week chiropractic regimen. It seems to have started to work. His last appointment he didn’t need as much of an adjustment. I’ll try to get some photos of that up here i I can next time.

Chris’ carpal tunnel has been getting worse. He had been just wearing a brace at night to sleep in. He’s now started wearing it all the time. With it on all the time Chris isn’t waking up at night in pain anymore and that’s good for the both of us.

Marleta with Hanger came by last night. We fed her dinner and she took a mold of Chris’ leg for a custom knee brace. Chris feels he needs the knee brace with the WalkAide to get the most out of his leg and rehab. Make sure you check out the photos in the gallery, pretty cool stuff. Chris should have his new brace in 2-4weeks.
Chris and I certainly didn’t miss giving him the daily Copaxone injections. At least this go around we know it’s actually doing something. I give him most of the shots, except for the one in the stomach, Chris does that one himself.

I have started working on the HiCy section of this website. I have a lot of information scattered all about that I have to organize and make sense of. I found with such a flood of people heading to Johns Hopkins that I needed to make the Taking Care of Yourself After HiCy booklet available to potential patients. I have scanned in th original they gave us when we were discharged and I removed some information that wasn’t relevant. This will give you a good place to start but they may give you something else when you get there. I am trying to work with Donna and Dr. B but they are extremely busy people these days! If you have any questions please post a comment or e-mail us!
Chris is still improving! He is happy to be able to lift his leg onto the bed again. He’s found that sometimes when he’s driving he is lifting his leg on his own! It’s coming back but it’s slow. It went pretty slow, we can’t expect it to come back any faster!

We have been experiencing 80+ degree temps the past couple of days. We have a hard time keeping our place cool. It seems that there isn’t much relief from his heat sensitivity. It takes a lot more to start bothering him but it still wears him out. The heat sensitivity is from the demylination which takes longer to recover than inflammation. By next summer Chris should be in a lot better shape, we’ll have to see. It’s nice to look forward to his improvements instead of waiting for the next setback.

Well, it’s late (again) and we have to be up early (as usual).

Keep on keepin’ on.

Chenell

Tomorrow we go back for more blood tests to see where Chris’ numbers are. Well, we won’t see them but the doctors will. I am sure they will let us know if anything is amiss.

As I am writing this Chris is doing his exercises. It’s amazing how simple of an exercise can wear his legs out. These exercises seem to be improving his legs on a nearly daily basis. I can’t wait to see what he’s like in 6 weeks.

We got our flight and hotel booked for the June trip to Baltimore. I don’t know how many more trips we’ll be able to make before I run out of o% credit cards. I know that is a terrible way to pay for things but we have no choice in the matter. Right now with myself being unemployed we are counting on our family for money for the bills and food. I think Chris might be qualified for Social Security Supplemental Income (SSI). They just take so long to make a decision that we may not be qualified by the time it started coming in. We’ll look into it. I may look in to a part-time job stocking shelves at night or get a paper route. I am just trying to have faith that my business will take off. I did send out 800 postcards advertising websites to new businesses. I got my first call today! We’ll see if it pans out to a job. I have another 1700 to send off but I don’t have the postage for them just yet.

At the end of the month Chris will be making an appearance for WalkAide at a convention being held at a hotel here in downtown Denver. It’s always a great way to meet a lot of people. We will be spreading the word about HiCy to MS patients, for sure! We told Chris’ chiropractor, Dr. Trupp about everything and he told us about a friend he had that committed suicide because she couldn’t handle having MS. People need to know this is out there so they can at least have some hope. I believe your mind-set has a lot to do with how your disease progresses. Being depressed, negative, stressed out and bitter will only make your body weaker and allow the disease to attack more easily.

I am not sure if I mentioned this or not, but Chris has started taking Copaxone again at the request of Johns Hopkins. He will be on it for 6 months to a year depending on which trial they decide to put him in. It has been shown in animal models that if they are given Copaxone they CAN NOT introduce MS. They are hoping to train Chris’ immune system out of the MS by using the Copaxone now when there is no disease activity.

Every day Chris is pointing out little things to me that he can do that he couldn’t before the treatment. It’s little things that normal people would take for granted. Like sitting on the edge of the bed. Before his legs were too weak to hold him up. He doesn’t get tired from chewing dinner. I never even knew he had that problem.

Well anyway, it is late and Chris has an early appointment tomorrow morning. Thank you all again for all your thoughts and prayers.

Chenell

Chris has spent a week in the knee brace and it seems to be working. His knee is less swollen than it has been in a long time. Chris is also concentrating on walking with proper form to rehab the leg muscles. He’s found that they are more tired than they have been in a long time! You don’t realize how many muscles are involved with walking. We haven’t started his physical therapy yet. We did go to the Chiropractor on Friday for a pain in Chris’ arm.

Chris’ arm has been bugging him for a little while now. When he goes to bed his arm goes numb and he wakes up with pain radiating out of his elbow. We aren’t sure if it was pain he WASN’T capable of feeling before because the MS had numbed him or if it is from his back muscles being so spastic and pulled his spine all out of wack. Now his muscles are letting up in spacticity and things just ain’t right. The chiro did take an x-ray of Chris’ back. He’ll see it Monday when he goes in next. I may need Chris’ dad to take him to this appt since I’m supposed to be working a temporary assignment.

Chris is working out his upper body three times a week on the bowflex and doing yoga twice a week. He stretches every morning. He tries to walk to the mailbox and back (approx 100 yards.. and he’s really slow and deliberate!) every morning.

Chris’ 3 month appointment with Dr. Kerr got rescheduled to June 18th instead of July 30th. That’s coming up really soon! Also, they already scheduled his 6 month appointment for September 17th. I’m kinda glad we haven’t booked any flights yet.

I finally took the time to scan the hickman line so you can see it actual size. It’s amazing just how much of it actually goes into your heart - it must go in about 7″ into your chest!

I’d like to send well wishes to Melissa and Jamie. Melissa is currently at JH undergoing the HiCy treatment. I have setup Jamie with his own blog to document Melissa’s progress. We’re going to have to have a HiCy reunion after a while!

It gives me the warm fuzzies to know that people may be getting better because of this site. Personally, I tell anyone who will listen to me! I may not be able to find a job, but to tell people of this awesome treatment is a reward in itself.

I haven’t really been looking for a job. I really, really, really want my freelance business to get off of the ground. I get discouraged every time I sit and start looking at job postings. I took some steps of faith and invested money that we couldn’t really spare on a postcard mailer for a startup website. I’m sending out about 730 this first round. I need 2 people to respond with a website to break even. I think it’s very likely that I will get quite a few more than that. Working for myself would definitely give me the freedom and flexibility I need right ow with my schedule! So keep your fingers crossed!! If you know of anyone who could use my web design or other creative services please let me know!

Enough of whoring out my services. Please keep Chris and I in your thoughts and prayers, we still have a long way to go!

Chenell

We have NOT heard anything back from the doc on the blood tests from two weeks ago so i guess his counts are doing fine. Chris is going in again next month.

Today Chris saw a doctor about his right knee. They took a couple of x-rays and examined him. The good news is Chris won’t need surgery. His knee muscles are so atrophied that it’s pulling his kneecap all crooked. So they prescribed him physical therapy three times a week for the next 12 weeks. The doc said that Chris should be doing much, much better by the time his 3 month follow up with Johns Hopkins in July. This throws a real pickle into the mix. I’m looking for full-time employment and Chris is going to need PT 3 times a week. We have one car and Chris still isn’t sure of his driving abilities. I don’t know of many employers willing to give an employee that kind of time off. I am thinking I may need to find a part-time job for now. We’ll figure it out.

Chris is pretty ecstatic that he doesn’t need surgery. PT isn’t going to be much fun but it will get him trained to walk normally again. It’s going to be some hard work these months ahead. No one ever said getting better was easy. We are going to go on some sort of low carb diet. Chris and I have gained a bit of weight and want to kick start our fat loss.

Chris’ 3 month follow up is scheduled with Dr. Kerr for July 30th. Chris spoke with Dr. Hammond today and is going to start on the Copaxone injections. It has been shown in animals that have been given Copaxone they can’t get MS. Chris will probably be on it for 6mo to 1 yr. It’s a minor inconvenience to ensure this awful disease doesn’t come back. Chris has worked out that he gets his MRIs and other required tests done there at JH. We seem to have a hard time finding a doctor locally who has their act together. He is going to call in our MRIs here locally so that we don’t have to go see a doctor to have them write the order.

I wish I had more to report but it’s nice that things are returning to “normal.” Thank you guys so much for your continued thoughts and support. It means so much to Chris and I.

Chenell

P.S. If you are going to go through with the HiCy protocol and want your own blog please e-mail me and I’ll see what I can work out for you.

I have forgotten for two weeks to post this huge, huge fact.

Quit worrying about dying from this folks.  I would say I still felt better than what Avonex made me feel like.

The 1, ONE, UNO death from Hicy was on a Aplastic Anemia patient.  They did not have MS!

It was early on in the usage of this in the auto immune disease class of diseases and they were still learning.  They did a bronchioscope on someone after the treatment and they died from a resulting complication.  Now they have learned enough to know for 21 days after the treatment you do NOTHING.

Dr. B if I got that wrong, please correct me but I think it’s how you told it to us while we were waiting for the shuttle that day.

This is no different than finding out you have cancer, and getting chemo for it.  Biggest differennce is this may actually cure MS where in cancer you go into “remission”.  We will see.  This drug has been around since the 1950’s and they are giving you just a bit more of it.

Folks, if Tysabri works for you keep using it now.  If any of the CRAB drugs, herbal, or exercise therapies work use it.

This is for the folk who cannot get this damn disease in check.  Every MRI I ever had had something in it.  They said I wasn’t that bad clinically but I was getting worse everyday.  Severe Refractory MS is what they call it medically I think.  HiCy, Dr. Kerr, and Dr. Brodsky may have saved my Neurological life.

So quit being scared!!

In my opinion the HiCy has been a lifesaver. I’m going to list some things that have changed in my life in the last month.

- I no longer wake up with numb arms

- I used to take 80 mg of Lorisol / Baclofen a day. Depending on my activity level I am at 20-30mg a day now. 2 weeks ago it was 40-60mg a day.

- Holy smokes has the spasticity let up. The knots in my Calves are gone, I can reach my back with my right arm(couldn’t before) and I can sit Indian style on floor without falling over. The clonus is there but now it at least stops. Before it wouldn’t.

- Balance is coming back. I can stand on one leg and balance myself for short periods of time where before I would fall over. I can close my eyes, lean way back, and it doesn’t cause me to fall over anymore. I can close my eyes with my feet together and stand that way indefinitely. March 12th I tried that and I was a falling tree.

- I can walk in grass again. I can walk again. The pic of me ad Dr. Brodsky is the only standing pic of me for a reason. I couldn’t even stand up well at all. I’m now going for small walks again.

- The dexterity in my right arm is coming back. I will probably grab my guitar in the next month because it’s about time. I can stir things I’m cooking without fatigue affecting my arm muscles.

- I am cooking again. I enjoy food again. I went grocery shopping for the first time last Monday in 2 years.

- My MS related fatigue is gone. I get tired from working out three times a day but it is not MS fatigue.

- I can think clearly. No more space outs. I am able to remember a list without paper. I remember details from my life I had completely forgotten. I used to take 2, 1-2 hour naps a day and I have not needed one since the HiCy.

- I just don’t feel as mad anymore.

So this is what I have noticed. My wife may have noticed more. I have stayed true to myself and have not looked much except for the well wishers comments. You well wishers rock and I thank you!

Oh- to you doubting Thomas’s…… get bent!!

For 4 years I have gotten worse every day. For one moth i have gotten better everyday. Do the math.

The lesions are no longer active. I feel it. On March 18th I woke up clearer than I have been since I was 8 with a 104 degree fever. If I had to pick a day MS started I would say it was then. Just because of the clarity I have now. I don’t remember feeling like this except before then. THIS IS ME NOT YOU LOL!!

Steve Tobaccan who is another HiCy’er from Virginia gave me some numbers when I was at JH. 100 treated and all getting better.

I had MS folks. I HAD it. It never once had me. For those of you who do not have that outlook no amount of HiCy will help. I’m in remission or cured for the first time in 15 years and if you don’t understand that screw you! I told you all before, there is only good positive things here. What’s more positive than giving hope?

It’s funny that I got yelled at for changing the website name by someone with MS. It wasn’t one of the doctors who treated me or the doctors following this site. A MS patient has that little hope!

Be happy folks… I firmly believe this cruddy disease is just letting out it’s death rattle. La la la la la lie…. (reference to a great song).

JH is opening more beds to treat people.

JH is the head monkey so monkey see monkey do. Watch the next year around this country and see the HiCy availability shoot through the roof for an off label, insurance covered option. My prediction.

I may start to say hi once a month or every couple of weeks here. I got nothing to say except my anemia must be gone because I am not tired. I do Yoga, 2 weight work outs and go for a small walk. Aside from being tired like I worked out, 1/2 hour later I’m fine. My wife is still the best to post.

Check out the video. No way in hell a month ago. No way.

Talk to you soon

-Chris

We went to a new doctor than we normally go to, mainly in part of the previous doctors’ inability to get Chris’ original labs to Johns Hopkins. Thankfully, a new medical building just opened up less than a mile away. Before the closest clinic was 12 miles (one way) from our place. This will be a lot easier for us especial if we have to do the blood draws more than once a month.

So now that we’re back home I had the time to sit and crunch the numbers for this whole procedure. We didn’t given thought to the cost beforehand because honestly we felt we had no choice. It was either this procedure or a home with how Chris was declining. Before this treatment he would have loved to have been what he was like when we were on our road trip and summer vacation just 6 months earlier!! So not including all our turn trips for follow ups this whole treatment has wounded up costing us upwards of $10,000. This doesn’t include the lost wages from having unpaid time off from work. I will get a more detailed break down of expenses so that you may plan accordingly. I am lucky enough to have Quicken and I can track things very easily and I’m a nerd like that. This is a godsend come tax time. Our medical deductions this year are going to be astronomical! This year we owed because we didn’t take enough out of Chris’ disability insurance payments. Hopefully this year we get somewhat of a return.

I am happy to say that Chris seems to be improving every day. Right now the pain in his right knee is keeping him from being very active. He is finding himself getting very bored sitting around the house. Not that he wasn’t before, he is now a bit stir crazy and wants to get out. Yesterday he actually brought our wheeled trash can in from the curb. It may not sound like much but it’s something he would not dare attempt before this procedure. Chris is taking a more active role in preparing our meals. Before the MS really messed with his appetite. He wouldn’t be hungry until I put the food in front of him. We are continuing the fresh fruit and vegetables in our diet. Chris is still not over the anemia so the iron does him good.

I don’t know if I mentioned this before or not, but the tightness in Chris’ muscles has let up significantly. He has reduced his Baclofen (muscle relaxer) intake by half. There were times before this treatment that I would put every ounce of energy I had in getting his leg to bend or to stretch it. He was so tight that I could barely budge it will all the effort I had. This is something I wish I could have gotten video of for you beforehand. It would be quite a noticeable change for you to see. Chris’ right ankle has always been swollen since the onset of his MS. It is still a little swollen now but it’s better than it has been in years. Fluid tends to build up in appendages that you don’t use as much as you should.

I really wish I had more to write about. Life is pretty boring right now and we like it that way. Chris has a million ideas and projects planned for around the house. The hardest part is telling him he has to take it easy and wait. The last thing he wants to do right now is sit still!!

I’ll write more tomorrow after we hear back about Chris’ blood test results. It’s supposed to be cold and snowy tomorrow so it will be nice not having to go anywhere. I’ll be keeping warm in the glow of my computer monitor, diligently searching for my next job!

Till next time.

Chenell

Chris is now on just two meds since we are home. The Valtrex he will continue to day 28 and the Bactrim which he will be on for the next 6 months. A 30 day supply of the Bactrim was only $6. It’s nice to have an inexpensive drug for a change.

We also received an e-mail from Donna from Dr. B’s office. She said that Chris only has a 5% chance of being infertile. That’s good news, we like to have options. They told me they are going to be revising the Taking care of yourself after HiCy booklet they gave us. Soon as I get the new one I’ll post it for everyone. It has some very important info to know before going through this procedure.

Chris spent some time today trying to get a hold of the local and national HQ of the National MS Society. He is wanting to get them to get an article about the HiCy treatment in one of their periodicals. We’ll see what happens. We are doing what we can to “shout it from the mountain top.”

Speaking of shouting things from the mountain top, I have to give credit to our wonderful family members who have been able to support us through this whole ordeal. I thank God that my father and Chris’ father are in a position to help us out financially. They are the reason why I’m able to keep all our payments current. Chris’ father, Ron, also had some MUCH NEEDED repairs done to our house while we were gone. We got a new kitchen sink, new bathroom sinks and the railing to the basement stairs was fixed. I also want to thank our friends and even total strangers for supporting us. It has meant the world to us during these trying times.
We had to cancel Chris’ appointment to have his WalkAide reprogrammed. It was just too late in the day. We were up at 5:30am and by 11am he was ready for a nap. The anemia is just zapping his energy levels.

Chris’ knee is really paining him. Right now he is finding relief having it wrapped in an ace bandage with a brace on top of that. He may not be able to bed it much, but it’s not bugging him as much. I can’t wait to see what he’s like when his knee is fixed.

I am back on the job hunt. The job market is pretty sad right now as well. If anyone knows of a place that is hiring for administrative support, customer service, or graphic design, please let me know. In this day and age it’s not what you know but who.

I wish I had more to report on. Things are pretty quiet since we are home. We need to call and make Chris an appointment to see his family doctor to do his follow up blood tests.

I will write more next week. I thank y’all for your continued thoughts, prayers, and support.

Chenell

After the Hickman removal, we headed back to the IPOP to see Mindy. One of the other IPOP nurses gave us a guide to takig care of yourself after HiCy. It has a lot of useful information that I would have liked to have known before going through the treatment as well as when he was released from the hospital. I am going to try to make some of it available online for you. Mindy gave Chris his final lab results and called Chris’ primary care physician so that he can have blood work done weekly when we get home. We said our goodbyes and told her we’d keep in touch.

We got down to the atrium and tried to call the shuttle, the phone went straight to voice mail. So I called our hotel and asked for the shuttle and they forwarded my call back to the cell phone. I finally call the other hotel the shuttle is based out of and the woman told me it was out of service for the next 30 mins. So we try to call a cab. The first call was at about 12:45 and I was told to call back in 15 if it didn’t show. Well it didn’t se we called back oh, like four times. We finally got so sick of waiting and it was long enough that the shuttle was already running again. I think it had something to do with opening day for the Orioles.

While we were waiting I read over a lot of the booklet the nurse gave us. I read in there that there is a very good chance that Chris is infertile because of the HiCy. It’s a little sad, but I was never head-over-heels about having a kid anyway. I don’t need a child to be fufilled. We could always adopt. It only bothers him now because he can’t. It’s like a kid never plays with a toy but the minute you throw it away, he asks for it. He knows he’ll forget about it eventually, just like the little kid.

We saw Dr. Hesdorffer while waiting for a ride. He was a little busy so he didn’t stay long. He said Chris looks really good. And Chris had to show off his balance for him, standing on one leg. We also ran into Dr. B & Donna while waiting. They also commented on how well Chris is doing. Chris referred to himself of being cured of his MS, and neither one of them corrected him.

I have to say we’ve been spoiled by coming to Johns Hopkins for this treatment. Never have we been take care of so well by a facility and staff. They are the best in the world for a reason. I owe you guys the biggest thank you of my life. THANK YOU TO EVERYONE AT JH!

When we got back to the hotel I looked up in our provider directory some orthopaedic surgeons for Chris’ knee. It is really paining him and he won’t be able to be active until it is fixed. His knee injury is a direct result of his MS. His messed up way of walking has been taxing on his body. He’s got an appointment setup for the 15th.

Tomorrow I have to get everything packed and I have to ship some boxes back home. I’m hoping I can take the hotel’s shuttle over to the UPS Store or something. I can’t believe we are going home on Wednesday. We honestly didn’t think we’d be back before the 6th according to the protocol.

Thursday Chris is going to go see Marleta with Hanger to have his WalkAide reprogrammed. His gait has changed enough that it’s not setup right for him anymore. It’s not helping him to walk as well as it should be.

Expect some serious changes to this site in the next few months. I have a lot of information to put into the HiCy section for you. Plus Chris doesn’t like the cartoon of himself in the wheelchair. He feels if it wasn’t for his knee he wouldn’t need it anymore except for longer distances because his muscles aren’t used to being used so much.

This is going to be my final post until we get home and settled in a bit. I plan on updating at least once a week unless Chris has a local doc appt, then I would write on those days as well. I have to go back to the job hunt when we get home.

Thank you everyone for your support during these scary yet exciting times in our lives. You have no idea how much Chris and I appreciate you.

Take care,

Chenell

P.S. Please be sure you check out the photo album of this trip, I’ve added photos on almost a daily basis.

They told me to stop most of the medications they gave Chris as a preventative against infection. He doesn’t have to take the Flucozanole, Amoxicillin, or the Noroxin. Chris has to continue taking the Valtrex 3x a day until day 28. They also gave us a new Rx for Bactrim (another anti-bacterial) that he starts on day 17.

We met another gentleman with MS who had gone through the HiCy treatment as well. He was a very nice guy, a little older with a lot more spasticity and disability. This guy came in in a wheelchair and was very slow and herky-jerky in his walking. He told us this morning he was walking around his apartment without the cane or wheelchair. I think he wore himself out a bit because he was telling us he was doing much better before he got to the hospital. Steven, if you’re reading this drop us a note!

While we were there waiting for the lab results we went down to 4B to say hi to Chris’ HiCy nurse, Laura. We did have other nurses while Chris was hospitalized but Laura really went the extra mile to make Chris more comfortable. It’s a shame that she is a traveling nurse and not a permanent part of the HiCy staff.

Tomorrow we are pretty much going in to talk to Chris’ nurse practitioner and to have the Hickman IV line removed. Today the nurse gave him the free and clear to go out to eat and all that.

Chris is loosing hair by the handful. And it’s not just off of his head. His beard, his chest hair, and yes his pubes too. His arm and leg hair is coming out a little but nothing like the rest of his body. I had to shake out the sheets on the bed because they were just covered. As Chris said, “It looks like someone shaved a squirrel in there.” We should have just shaved his whole body before all the chemo. LOL

So we went back to Mick O’Shea’s for dinner tonight. It was a celebration of sorts for Chris. Had to celebrate his new “freedom” from the hotel room. Again the food was great. The place was pretty busy for a Sunday night. It was 9:30 by the time we were done eating.

Well, we are feeling fat, full, and tired. We are heading to bed. More tomorrow. Back home on Wednesday, yay!

Chenell

Chris and I were a little curious to how they determine the absolute Neutrophil count (ANC). We were wondering if it was at all related to the WBC. I found this pdf file on-line that explains how they calculate the ANC. I would do it with the numbers I have here but I am missing a number to be able to calculate it myself.

We have noticed since Chris’ platelet count has been down, the inside of both of his arms where they rub on the wheel chair are scratched and bruised looking (very slightly, nothing to cry about). That is only from a slight pressure. Just goes to show you that you need to be a bit careful not to injure yourself with a low platelet count.

This morning Chris noticed that he’s started losing hair. After he took his shower he wiped his head and face down with a towel. When he looked at the towel it had hair in it. Right after lunch Chris started pulling little hairs out of his mouth. His shirt looks like he just had a hair cut. Chris thinks it’s his beard falling out and not the hair on his head. He hasn’t shaved since the treatment started and he’s got bald spots on his face. It’s rather funny.

So I got our tickets home tonight. We fly out Wednesday morning. It is going to be so nice to be home again. I just wish I had a job to return too but oh well. We joined United Airlines’ frequent flier program in hopes to maybe upgrade a ticket or two in the future. We have 4 more trips to make back out here in the next 2 years to follow up with Johns Hopkins. We have to come back at 3 months, 6 months, 1 year, and 2 years.

The main reason I signed us up with United Mileage Plus is because people can transfer their miles to our account for us to use toward tickets. So if anyone out there has any miles they aren’t using and have no one to give them too, we will take them. Drop me a line if you have any to donate.

Tomorrow is going to be a nice break. It will give us a chance to relax and get things somewhat packed up so we’re ready to go. I am going to have to go to Kinko’s or something to ship a lot of stuff back.

Anyway, it is late and we are tired. More to come tomorrow if anything interesting happens (don’t hold your breath) if not I’ll write on Sunday.

Chenell

DO NOT FIGHT THE FEVER! OR DONNA WILL LAY DOWN THE LAW!

Just let the fever happen. Dr. B said they don’t even hospitalize you unless it is really bad. The fever isn’t necessarily a bad thing, it shows that your body is starting to work again the way it should or it could mean you have a bug. Either way the doctors need to know to be able to make an informed medical decision on what to do. A Neutropenic fever is not the same thing as a fever you get when you have an infection or bug. You’re not supposed to try to break the fever like we did. We were lucky that it was a Neutropenic fever and NOT an infection that could have turned bad really quickly. So don’t try to break the fever like momma used to do. How’s that Dr. B?

I think I’ll be able to write the HiCy Handbook by the time this is all said and done. That is if the protocol doesn’t keep changing things on us. It’s such a new procedure, at least as far as MS goes, they are still learning what works best. We still feel safe because we are in the best hands in the world.

They ended up doing a culture on Chris’ Hickman device on each of the two tubes. They take an extra vial of blood from each tube to test for any bacteria. They changed the caps on it as well. We had to wait for all the culture results to come back before they would administer the Filgrastim. His breathing was checked by 3 different nurses throughout the whole visit. They were checking his lungs for sign of infection. He sounded fine so they didn’t do any x-rays. He got lucky this time because he didn’t get an infection.

I am glad to report that Chris’ WBC has climbed to 350 and his Neutrophils are at 245. He is well on his way up. His platelets and red blood cells haven’t dropped enough for them to give him more.

There has been a little confusion over WBC and Neutrophils and the count having to be at zero. We aren’t medical people so we are trying our best. We are definitely learning a lot as time progresses. If Dr. B wants to correct us he certainly can.

Neutrophils are a SPECIFIC type of white blood cell. They are the cells responsible for attacking bacteria and infection. The chart below should help demonstrate a little better the relationship of the Neutrophils (ANC) to the WBC.

They started the growth hormone on day 6 before everything had stopped dropping. A few of those days I don’t have any data to share but it is easy to see it dropped quickly. If they would have waited to give the growth hormone Chris would have been without an immune system for a MUCH longer time frame. I’m not sure if that’s the exact reason why they do it, but it would make sense to me.

** From Chris: Isn’t is interesting the relationship between what has to die all the way and MS. Are these Neutrophils somehow responsible for crossing the blood-brain barrier and thinking Myelin is an infection? It’s just something I’ve been thinking about. **

Chris is feeling twice as good as he did before they started him on the Filgrastim. He just can’t sit still. He’s not spastic or MSey at all. He’s just ready to do something so bad because he hasn’t felt like doing much in the past 2 years.

It’s late and I’m beat. I am done typing for tonight.

Keep the prayers coming.

Chenell

I got some rather upsetting news today when I got back from the grocery store. I had an EMAIL (not even a call) from my work telling me they were firing me because the part-time temp fill-in they hired wasn’t working out. It sucks because I had no idea anything was going bad. I had e-mailed these people and from what I could tell things were going fine. I wish they wouldn’t have agreed to give me the time off in the first place. I did everything I could, maybe they should have hired a full-time person to fill in for me. I’ve only been gone two and a half weeks and I assure you by the time I get back they still won’t have hired a replacement for me. I am a little mad, but I believe things happen for a reason and something good will come from all this. I later on talked to a woman named Diane about a job opportunity. Crazy coincidence, she used to work for Signature Wire too! She told me that they fired her on December 23rd without any warning. If they continue to treat their employees as disposable, I am much better off.

Anyway, sorry for rambling a bit there. I went down to the exercise facility to try to burn off some aggression. When I got back I found Chris nearly naked on the couch fighting off a fever. We’ve been fighting the fever now for the past 4 hours. He’s gone anywhere from 100.2 to normal and everywhere in between. A fever of 100.4 or higher and he’s got to be admitted to the hospital. I got some ice from the bar and made ice packs out of zipper bags and the Press ‘n Seal wrap. We put one on each wrist, behind the knees and one over his heart. It seems to be working.

What an exhausting day that isn’t even close to being over. I have a feeling we will be up all night checking Chris’ temperature every hour or so. If he can hold his temp until 12:30 we’re going to bed.

I’m exhausted both physically and mentally. I am going for tonight. Tomorrow has to be a better day.

Please keep us in your thoughts and prayers.

Chenell

P.S. Chris’ fever broke at 10:30pm, maintained normal temp until 1am and we went to bed.

Dr. Brodsky even made it by today and seemed surprised with how well Chris is doing. It’s good to hear the nurses and doctors excited over how healthy he is. Dr. Brodsky said that Chris’ numbers should be back into the normal range by the end of this weekend. The only have to give him the Filgrastim until his Neutrophils are at 500 instead of the 1000 we previously thought. He thinks that we may be able to go home by mid next week. Chris just can’t believe that we may able to be home that quickly. This trip is just a minor inconvenience compared to the last 4 years with MS.

While waiting for the shuttle bus in the lobby, Chris spotted Dr. Hesdorffer. He said Chris was looking really good too. Plus he wanted to make sure they took a look at his knee before he leaves for home.

Chris is betting that his WBC will be up around 280 tomorrow morning. They are supposed to rise exponentially from what he understands. Place your bets!

Chris and I can’t wait to go home. It will be nice for me to actually go to work and get back to a somewhat normal life. Chris is eager to start exercising with his new PT, Carmelia. We can’t wait to come back in 3 months and see what kind of improvements he has then.

When we get back home and I don’t have daily updates to do anymore I will start consolidating the info from this blog into a more organized and easier to read format. I’m hoping to give potential patients a step by step outline of what to expect before during and after the treatment. We’ve learned a lot for digging on the ‘net and forums. It would be nice to have the information all in one place. It seems even as we go through the protocol things are changing. It’s been a little confusing to say the least, even though JH has done a great job of explaining things.

Chris’ bones and joints seem to be cracking and popping more, we think as a result of the growth hormone. He is still feeling run down when doing anything physical and towards the end of the day. His red blood cell count is still dropping and he probably won’t feel better until those numbers improve.

Can’t wait to see tomorrows numbers!

More tomorrow.

Chenell

Then the nurse usually comes in and asks a series of questions and listens to Chris breathe. We are to bring in all his prescription drugs on a daily basis for them to look over. It’s redundant and a bit of a pain but we’ll take the minor inconvenience over MS any day.

Chris got some relieving news today, the nurse practitioner told Chris that it is normal to feel a bit MSey because of the Filgrastim and his low WBC. Today his WBC dropped to 80, RBC is 4.15, and platelets are at 46. Chris is scared to even get a bruise at this point.

Chris and I play a game of Rummy 500 while waiting for his lab results and IV to finish. Chris usually kicks my butt, but I’m a newbie. He’s got this crazy idea that he’s going to teach me Pinochle. He says I have to master Rummy before he does that.

Today we touched base with another HiCy MS patient. The nurse gave us his e-mail and gave him ours. I sent him a quick note and he replied very fast. He is in IPOP across the hall from us in HIPOP. I guess he had the fever and had to be hospitalized and on IV antibiotics. He is in touch with another patient that started the same time as him and is going home now any day. It’s nice to be able to talk to people who are going through the same thing you are. Chris is weary of any face to face meeting at this time because of his low WBC. You can’t get sick from e-mail, though!

If you have a HiCy blog or know someone who does, please let us know so we can get them a link on our page. Judging by the numbers there are a large number of people watching what is going on so we can use this site as a launching platform. Since each individual experience can be different the more information that is out there available, the better idea you’ll have of what it will be like. Individual blogs can be hard to find and we would love to become a centralized site for the HiCy treatment (we may repeat this paragraph for the next few posts to make sure everyone sees it). Chris had to do A LOT of digging to get the information we have, we’d like to make it easier for others.

You know you go to the grocery store too much if the checkers start recognizing you and are all friendly. I can only carry so much at a time and the refrigerator at the hotel isn’t exactly full size. I stick to mostly fresh veggies and meats because the freezer is very small and I have a hard time getting ice cubes to freeze. I try to get 2-3 days worth of stuff so I don’t have to worry about the freezer or things going bad. Besides, it’s only a block and a half and the walking is good for me.

I’m sorry I don’t have more to report, things are pretty boring right now. Boring is good though, he could get a fever and that would be exciting but thats excitement I could live without.

Thank you all for your continued support.

More to come.

Chenell

Chris got another dose of the Filgrastim. It tends to bother him towards the end of the day. He describes it as a flu-like ache. It’s mainly his pelvis and the larger bones that are paining him. The nurse said it can have an accumulative effect and it may really hurt towards the end of it. If it gets too bad they will give him something for the pain.

So today was Easter, it felt odd not to be around our family. We made enjoyed each others’ company and talked to our parents’ on the phone. I also picked up a ham steak and other fixins’ for dinner which made it feel a little more like a normal easter. I had even picked up a couple of small caramel filled chocolate bunnies to make it feel more like home.

Chris thought since it is Easter, that he should share with everyone some of the improvements he’s been having. Right now the improvements he’s been having aren’t as good as they have been even a few days ago because of the anemia.

Keep in mind these are very small improvements and none of them last all day because of the tiredness he gets from the anemia. We are seeing the most improvement in his most recently developed symptoms. Chris says the MS fog is gone and has not come back since the HiCy.

• Tingles/numbness gone in fingers.
• Muscles less tense/spastic.
• Balance is improving. Used to get dizzy just standing with eyes closed. Can now stand on either leg for a short period of time without the clonus kicking in.
• Remembering events from our wedding/honeymoon/vacations that he had forgotten.
• No longer feeling like he’s on a sheet of ice in the shower.
• Doesn’t feel like something is “eating him from the inside out.”
• Morning clonus in right leg has improved significantly.
• Changes in mood and patience. Cab driver closed the door on Chris’ hand, he flipped out but didn’t swear him out and later apologized. Chris has always been the kind to hold a grudge so to speak.

I have definitely seen Chris improve, but with the onset of the anemia, the improvements have kind of taken a bit of a break. I can’t wait to see what happens when he’s off all of the drugs and isn’t dealing with side affects any more. From what I’ve read, he’s only going to get better the more time passes.

Back to the HIPOP tomorrow morning. Same ol stuff, different day. This routine is starting to get really boring.

More to come tomorrow. Thank you all for your support!

Chenell

We have to keep monitoring Chris’ temperature until his WBC is back to normal. He is vulnerable to fever and infection until his immune system is back. I have been washing my hands constantly and using the liquid hand sanitizer. My hands are so dry and scaly right now it’s painful at times, I have to try to remember to throw on some lotion every now and then. I try to wear latex gloves when preparing meals. I also spray down our hotel room with Lysol and Oust.

Chris is definitely feeling anemic. He is tired, but says it’s not an MS tired. If he gets up and walks around he gets worn out easily. He was actually feeling better a few days ago when his numbers were higher. It’s to be expected, less blood cells means less oxygen going to the muscles.

Chris had some complaints about feeling achy after the Filgrastim infusion. It is almost a flu-like ache in your larger bones. It’s gotten better the more that time progresses.

We also found out today that we needed to cover Chris’ bandage when he showers. That would have been nice to know last night. The nurse recommended Glad’s Press n’ Seal wrap. I went to the store when we got back and picked some up. That stuff works like a charm, sticks right to the bandage! I’d like to see Glad advertise that use for their product! LOL

Tomorrow is our next appointment. We don’t even get Eater off, oh well! I am curious to see what Chris’ counts will be like tomorrow.

Take care and Happy Easter!

Chenell

I called th pharmacy Wednesday as well to check on the whole prior authorization thing. They had taken care of both the Fluconazole and the Valtrex. The Fluconazole is a $10 copay, the drug they wanted to charge $150 for 10 pills, crazy! They said I’d need to call in the refill for the Valtrex, but the Fluconazole was already filled.

This morning was Chris’ second trip to the HIPOP. We thought his appointment was for 8:30am because we had rescheduled for 10:30am effective next week. They did it right away. We were 2 hours early, buy they still managed to squeeze him in. They took two more vials of blood and all his vitals. His Hickman central IV has healed enough that they changed his dressing to the clear waterproof window kind so that Chris can finally shower.

His lab results came back a hour or so later and we got a print out of the numbers (see key numbers below). His WBC is down, but not going down as fast as they expected. I guess Chris is just too healthy. It just sucks having to wait is all. Since they aren’t dropping as quickly, they gave us Friday off. Our next visit will be Saturday @ 10:30am.

I am glad to report that Chris’ appetite and eating habits are back to normal. We’ve eaten some rather nice large meals lately without any problems for Chris. In fact, today we had lunch down in the restaurant in the hotel lobby. Chris had a tomato based crab soup and I had one that was tomato and cream. Both were heaven in a bowl. The BEST crab soup either of us have ever had. Even the bread rolls were rockin’. Yummers! Chris ate it with his mask on, lifting it up to spoon in the soup. LOL

While we were downstairs, we extended our reservation through the month of April. It would suck if we had to stay longer and they had already promised our room to someone else. We can leave early an we won’t be charged anything. Right now the hotel is completely booked up.

We heard from Carrie that there are 3 other HiCyers right now with MS, and a couple of them may be staying here. I don’t know if they’ve been following the info on ThisIsMS or what. If you are reading this, please drop us a note! I hear the people at JH are passing this site along to HiCy patients and potential patients. I will do the best I can to document everything accurately as I can. If you have questions, please contact me by leaving a comment.
I took a cab ride out to Whole Foods today. It’s about a mile and a half from the hotel, but since we were in traffic it ended up running me over $10. I have been trying to keep Chris on a high iron and protein rich diet to help with the anemia. I found some information on-line about iron rich diets. I went to Whole Foods specifically to find Chris some bread that did NOT contain whole wheat. Whole wheat can inhibit the absorption of iron. I found some white rice bread that should do the trick until he’s over the anemia. Of course, I had to pick up a few other things while I was there. The other grocery store closer tot he hotel does not have the selection. Waiting for the cab back sucked. It was very, very windy. I hung out in the doorway so I wouldn’t have to be out in the wind. The last thing I need is to catch something and bring it home to Chris.

Chris’ Dad, Ron, was nice enough to pick us up an electric skillet so we can have a little more variety with our meals. It’s nice having a range, but it’s hard to cook some things on. I wish I would have packed some cooking utensils and spices for the trip, oh well. Just gotta work with what we have.

I did some tweaking of the graphics tonight. If the page looks odd for some reason try clearing the cache and refreshing the page.

On that note, I bid you goodnight.

More on Saturday.

Chenell

We called the shuttle around 7:45am to tell them to be here at 8:15am. We were all rushing to get ready and downstairs. When we got down there he hadn’t made it in yet. The driver said he had ran into traffic. So we ended up waiting nearly 30 minutes for him to show. We got to HIPOP at about 9am. The nurses there were ok with it, especially since it was beyond our control. They took Chris’ vitals: weight and blood pressure. They took the blood pressure twice, once sitting and once standing. The nurse was pretty impressed. I guess Chris is healthier than the patients she’s a costumed to seeing. They took two vials of blood to test. We had to wait there until the lab results were in. We met Chris’ nurse, Carol, who also has MS but a much milder case. She will be giving him all the infusions and injections necessary in the HIPOP. We were there about an hour. Chris also met with the Nurse Practitioner to have an RX written for Ambien CR and a refill for his Baclofen. She examined him ad answered any question he had. His blood work came in and he’s so well off that they decided he doesn’t need to come in tomorrow. Our next appointment is Thursday morning. It looks like Chris’ white blood count (WBC) will be at zero sometime between Thurs-Sun. They want you to be at nadir (0 WBC) for 2 days min (per the protocol) before you can start on the drug to get your body making new blood cells. Chris has a 1 in 3 chance of getting a Neutropenic Fever in this time. If his temp is 100.4 deg F or warmer he has to be hospitalized for a minimum of 36 hours. Please pray that he doesn’t get that warm!! If he even has a hint of a fever I will do what I can to get him cooled down here so he doesn’t have to be hospitalized.

Took his new scripts down to the pharmacy. They have about a 90 min wait time so we went back to the hotel. I waited until after 3pm so the guy from this morning would be off. He’s always so late, I don’t care for him much. The same guy who didn’t call me the other night. I got a call from the pharmacy telling me that United Healthcare didn’t want to pay for the Ambien CR. The regular Ambien was covered but had stopped working for Chrisa long time ago. 30 tablets would have been over $160. I got 14 of them hoping he won’t need them every night. I headed back to JH around 3:30pm. Jeremiah, the nicest, kindest driver out of the bunch was working. He has been nothing but respectful and kind to me. He actually showed interest in my husband’s condition and said he’d say a prayer for us. He was nice enough to wait for me while I was at the pharmacy AND drop me off at the grocery store on the way back. He said he would drive me anywhere I needed and that he was here to serve. Good guy.

I picked up some REAL FOOD at the grocery store. I got some boneless/skinless chicken breasts and a sirloin steak to split with Chris. I also got some fresh asparagus, which is very high in iron. We had sweet potato, steak, and asparagus for dinner. Chris found that he couldn’t eat too much at a time. It seems his stomach has shrunk quite a bit. He got hungry later and ate almost all of it. Hes eating small meals here and there. He ate a huge turkey sandwich tonight as a snack at 10pm tonight. I couldn’t tell him no.

Chris is now wearing his WalkAide all the time and doing two exercise segments a day. He knows it will help him regain mobility plus it helps him walk now that the spasticity is letting up. He is pretty much just using a cane to get around the hotel suite. Last week when we got here, he was pretty much in a chair all the time.

I’m happy to say things are slowing down a bit here so I don’t have nearly as much to report. Tomorrow is an off day, I may not write unless something interesting happens.

Take care and thanks for keeping us in your thoughts!

Chenell

Chris’ nurse had me signing discharge instructions saying what to look for and what kinds of meds hes got to take and how often. I thought he had a pharmacy before, jeesh! They sent us home with 5 different drugs. The nurse said she faxed his Rx’s down to the pharmacy, but they only had two of them ready when we got down there.

Chris couldn’t hang with the smell of food in the lobby and I had to run and get a bag for him to yack in while I was talking to the pharmacy clerk. They go through each medicine one by one before the put them in the bags. I guess it’s a pretty good check system. I have a few more things to iron out with United Healthcare. It seems one medicine, Fluconazole, they need a prior authorization for and I have to call this woman tomorrow about it. They gave us a 5 day supply of it and I had to sig something saying I would pay $150 for the 10 pills if the authorization didn’t go through. The clerk wasn’t too worried about it, she says they are almost always approved. The Fluconcazole is an antifungal to prevent fungal infections. Also, United Healthcare only wants to pay for 30 of the Valtrex antiviral medicine (yes, the herpes medicine!). The doctor has prescribed 3 a day, so that is only a 10 day supply. I looked at a printout they included with it and it says 30 pills costs $618.30. If they aren’t going to cover it for the rest of the month, and however long the doc wants him on this, we are going to be in some serious financial pain. I will talk to the pharmacy person who has to get the authorization for the other drug tomorrow. If he gets hospitalized again because they don’t want to cover this stuff it will end up costing them a lot more. I think it is in their best interest to cover this med. He was also sent home with two antibiotics: Norfloxacin and Amoxicillin. He’s got to take the Norfloxacin twice a day and the Amoxicillin three times a day. They also gave him a prescription for the Ativan they were giving him in his IV but in pill form.

We got back to the hotel and I had to walk over to the Walgreens to get a thermometer so I can check Chris’ temperature regularly. If he gets a fever he has to be hospitalized because than means he may have an infection. I also walked to the grocery store after going back to JH. I’m glad we’re downtown where I have a lot of places within walking distance. I can’t carry too much at a time, but it saves me cab fare. Besides, walking is good for ya.
The more and more time passes, the better Chris is feeling. He got another sponge bath because he felt gross. The chemo makes him feel like something is trying to crawl out of his skin. He describes the infusion as someone pumping heroin and draino into his veins. Chris is pretty much over his nausea and hasn’t taken any Antivan since the dose he took when we got back to the hotel. The roads to JH are rather bumpy because of all the construction going on there. Chris has been eating, but very light small meals. Today he had a couple of cookies and munched on cold breaded chicken strips. He has found that his vision issues go away if he is well hydrated. His eyes get a little blurry, he eats some grapes and hes better. It’s good to have something so obvious to tell us he’s dehydrated.

Chris’ next appointment is tomorrow morning at 8:30am in the IPOP. They will be taking his blood on a daily basis to make sure that his levels are ok and to check his cell count. Once the white blood cells hit zero he will start on a drug that will kick start his bone marrow into making new blood cells and make his new immune system. I have to monitor him closely while he’s at the hotel to make sure he doesn’t get any infections or catch something. Since it’s cold/flu season it is especially important. Chris will need to wear a mask when out and about. I should probably wear one when I go to the store as well.

It’s good to have Chris home. The hospital was depressing. The whole Weinberg building is a cancer center. There were many many people in there looking so much more ill than Chris. He likes being here at “home” because it is so much more comfortable and he doesn’t have nurses bugging him all the time. I like it because I can start on these posts a lot earlier in the evening than what I was.

We have a very early day ahead of us, I’m out of here.

Goodnight!

Chenell

Chris was in the bathroom when I got to the hospital today. He finally had a bowel movement and made the nurses happy. They wanted to make sure his bowels were still working properly. Without eating much there’s rally nothing to poop out. The smell of it was so foul that it turned Chris’ stomach. I got a whiff of it too and boy did it smell horrid. Chemo does that to you, makes your vomit, urine, and poo smell like death warmed over. So needless to say he had some problems with nausea this morning. Chem can make a person very sensitive to smell and make it hard to taste food. They gave Chris some Reglan for his nausea this morning. I guess hes been on a combination of 3 different kinds, sorry I can’t remember them all for you.

It turned out Chris’ potassium levels were low. So they gave him 40 mEq (milliequivalents) through his IV. I guess a banana has about 10 mEq, and he did eat one for breakfast. Chris did eat some lunch and dinner today. We still kept it pretty light, and certain foods turned his stomach (steamed broccoli, salad, cottage cheese). He was able to handle grapes, a turkey sandwich, coffee cake, orange sherbet, a peanut butter cookie, and some slices of cheese. I have to be careful when I go grocery shopping. I want to get foods high in iron but he’s probably not going to want to eat certain things.

Chris had issues today with blurred vision. We went for a few rolls around his unit and he had a hard time seeing anything in the distance and things close up were blurry. The nurses haven’t heard of anyone having vision problems from the Cyclophosphamide, but they looked into it. Strangely enough after Chris wiped his face with a wash cloth his vision improved. Not 100% but still and improvement. This is when we decided Chris was in need of a sponge bath. Chemo gets into all of your body secretions, tears and sweat included. So this may have been the source of his issue. Chris hadn’t showered since Wednesday night. He felt much, much better after the sponge bath that I gave him. He felt so good in fact, that h mentioned to Laura his nurse that it should be required as part of the FDA protocol to shower or take a sponge bath a few days into it. He can’t take a full blown shower yet because of his central IV. It can’t get wet. Once it’s healed more they put a clear plastic type bandage on it and that can get wet.

Around 5:30-6pm Chris made the comment to the nurse that he was finally starting to feel better. Just in time for the chemo! LOL, go figure. At 7:17pm they started his last dose of the HiCy. Chris took it pretty well. Just a bad headache and a feeling of being on fire. I wet down a paper towel and put it on his forehead and that helped a little at first. They gave him some more Oxycodone to help with his headache and muscle spasms as well as his Baclofen. He fell asleep for a bit after that. We were watching Family Guy and American Dad on the TV. I am thankful that I set the alarm on my cell phone for 9:45pm because I fell asleep too. I set the alarm so that I know when to call the shuttle to come pick me up before they are done for the night. He was still due for more meds and to have his blood drawn after I left.

So Chris gets released some time tomorrow. Who knows when. It can take hours from what I’ve experienced with my Dad and we have Rxs to pick up from the pharmacy. It’ll be good to have Chris back “home.” It will be much easier for me to do these updates at a decent time.

I am beat, we’ve had one hell of a week! I am off to bed, for Chris wants me at the hospital at 8am.

Keep praying!

Chenell

Today Chris’ nausea was pretty under control. He ate some grapes for lunch and more fruit and the cake from his dinner. He actually told me he was hungry for the first time in days. I don’t expect him to scarf down a whole meal, but it is a definite improvement.

Chris was feeling so much better I actually got him out of his room and wheeled him around his floor a bit. Later that day, he put on his WalkAide and went for a short walk. It’s important that he gets up and moves around because he is already going to be weak from the chemo, he doesn’t need his muscles atrophying any more than they already are.

It may be too early to tell, but Chris says he actually feels different. He can’t explain it. I don’t want to jinx things by saying this, but Chris had sensation in a couple of fingers that he hasn’t had in years. He describes his body sensation like having a latex glove on. Well, on two of his fingers he said they feel “normal.” He also says his chronic itchiness from the MS is gone. I don’t know if it’s the HiCy working, but I certainly pray that it is.

I have to give props to Chris’ nurse today. Laura was very cool and really went out of her way for us. Chris was feeling a bit feverish and she came in right away to check his temperature. She got Chris a breathing machine to keep his lungs fit and a special mouthwash to rinse with after every meal and before bed. Chris said his lips were peeling and she brought him some medical grade lip balm. She was aware of Chris’ nausea issues and was able to track it down to a specific medication. They give him this drug called Mesna to protect his bladder from the chemo. I guess chemotherapy can really hurt your bladder and that could lead to infection. She went on-line and found out that diarrhea and nausea were the main complaints with this drug and that giving it to you over a 30 min period instead of 15 tended to lessen those side effects. She tried it, and it really helped!! I feel we are in great hands here with JH. There is a reason they are #1 in the nation.

Laura also educated us a bit on chemo, being an oncology RN and all. I guess Chris’ bodily fluids are considered toxic until 48 hours after his final treatment. That would have been nice to know like last night when I was cleaning up Chris’ blood. Or after the 2nd or 3rd time he peed on me while I tried to help him with the urinal. (Sorry honey, I have to report the good, bad and ugly!)

About an hour before they start the chemo they give Chris 250ml of fluid over the course of an hour. And then they won’t let him have the HiCy until he’s peed at least that amount out! Throughout the day he’s on fluids, but not at that kind of rate. I think it’s more like 60ml an hour. This stuff really does a toll on your body and being well hydrated helps. It is also important to DRINK fluids to keep the stomach healthy, ice cream and other things that are liquid at body temperature count!

Chris really tolerated tonights dose well. About 30 minutes in he started getting a headache. He describes it as having on a helmet that is too tight. He also experiences “the shakes” in his gut and legs. He says he sees tracers and the light really starts to bug him. He gets an overall feeling of restlessness. Tonight his headache was bad enough they gave him some Oxycodone. I guess his Morphine has been discontinued.

Nightly they weigh him and take some blood to test. Tonight the night nurse also changed Chris’ bandage. Chris was in a little bit of discomfort with the cleaner they use on it, but other than that it was relatively painless. I guess they also wake him up at 6am to weigh him in addition to doing his vitals every 4 hours. You can’t get any rest in the hospital!

Around 9:15pm Chris is pretty ready to go to sleep. He wasn’t supposed to get anything until 10, but the night nurse gave him his drugs early. He got some Adivan (anti-nausea, anti-anxiety), and Marinol and that usually puts him to sleep quick. He’s usually dosing off by the time I need to call the shuttle bus.

I really want to thank you all for all your thought, prayers and support. You have no idea how much it means to Chris and I. Chris will be the first one to tell you that there are more needy people in this world in need of prayer, and that he is no hero. He says he’s selfish and he actually deserved MS because of karma and what he’s done in his past. He feels that he has to do this: 1.) for me because I don’t deserve it, and 2.) the only way he can feel right about this is to somehow let others know about this so that they can get better. It’s just sad that there are people out there that are too far gone for this to help them. We are so close to being done with this disease!! The future looks very bright.

One more day!!!

Let us pray that the outcome is anything short of miraculous!

Chenell

P.S. Sandy - Chris loves your idea of the Pheonix tattoo!

I guess I wasn’t quite prepared to see Chris the way he way this morning. Last night he was very talkative and friendly and this morning he was quiet the opposite. He was very lethargic and nauseas. He spent most of today sleeping and puking. I guess he ate breakfast and couldn’t keep it down. He got nauseas if I even told him what they had brought him he would get upset.

Dr. Brodsky actually made it by to check on Chris. He seemed pretty surprised that Chris was having such a hard time with nausea, especially after only one dose. He said about 5-10% of people have no nausea, while another 5-10% have it constantly. Looks like Chris may be one of those unlucky people.

Chris is on constant fluids to keep him hydrated. The nurses check his vital signs (blood pressure, pulse and temp) every 4 hours. They have a drug to protect his bladder and one for his kidneys and about 2 or 3 different types of anti-nausea meds. Pretty much all of his medicine (except for the Baclofen and Marinol) goes straight into the central line. They take two vials of blood from him daily (out of the line) to check his platelets, potassium, magnesium etc.

Carrie Trecker from Dr. Kerr’s office also came by to see Chris today and to pick up the paperwork for the Project Cure blood samples we gave them last time we were here. She said she’s never seen Chris so quiet! Chris will be the first to admit that he has a big mouth. Just goes to show you how bad he’s feeling.

Someone from the PT/OT department also came by today wanting to work with Chris. Since his nausea was so bad we didn’t want to move him around to much. She said it was important for him to get up and around a little so that h doesn’t become any weaker. The last thing we need is to get him back to Denver ad have him unable to walk AT ALL. I guess she is going to be back sometime on Monday to see Chris and work with him a bit.

Chris’ major complaints today (besides the nausea) are feeling really run down (no energy) and he had issues of being too hot and too cold. He’d be hot one moment, shed some layers or take off a blanket, just to be cold the next. It was as if he had a fever but we know that was not the case. The pain from the main line has ceased, or at least stopped bothering him for now.

Around 7pm it was time for his second dose of HiCy. The nurse wanted to get his weight. Somehow in the transfer of getting him out of bed and onto the scale his extension lines for his IV came loose. He started bleeding out of the line and made a mess all over himself and the scale. We are just fortunate it didn’t come out where it hooked up to the main line, the skin could have been torn. Chris somehow ended up on his knees on the scale and it registered a measurement. The nurse asked me if it seemed right, it was a little low but he hadn’t eaten all day. So we didn’t bother to try to get another weight measurement. Chris couldn’t hang with us no more. He is so weak that he cannot sit up in bed without help nor get up out of bed onto his feet. It could be the chemo, or the drowsiness from the anti-nausea meds, it’s hard to say at this moment.

At 7:14pm eastern Chris finally started the second dose of HiCy after having to get some new IV extensions and have his line flushed with saline solution. This time he didn’t get a headache and he was no more nauseas than before. Maybe he is starting to build a tolerance, but I doubt it. I can’t believe they actually do this procedure outpatient. I could not imagine having to take him back and forth on a shuttle with his nausea. Not to mention while in the hospital he is on constant fluids o keep him hydrated. I wouldn’t want to try to take care of him while he is this sick. I am very grateful for the nursing staff. They make sure he has his medicines on time, get him soda, empty his urinal and barf tub, as well as check on him. I think my job will be hard enough when he gets released.

Anyway, it’s late and I have another long day ahead of me tomorrow.

More to come!

Chenell

Our day started at about 6am. Got Chris up and wiped him down with those antibacterial/antimicroorganism cloths again. We called the front desk at about 7:30 to ask them to have the shuttle ready so we can be at Johns Hopkins at 8am.

We were running a bit late, mostly because Chris had to take a crap and those type of things just can’t wait with him. So we fly down to the lobby as fast as we can and the shuttle isn’t there. The lady at the front desk called again and found out that the driver didn’t show up this morning! That would have been good to know, oh when we originally called them. So I go down to one corner and one of the bellhops or whatever you want to call him went to another to try to flag down a cab while the front desk lady was on hold with the cab company.

So the cab shows up, it’s like 8:10am by now. We have him drive as quickly as possible to Johns Hopkins, which is normally about a 10 minute drive. He got us there in probably 5 minutes. So we go into the main entrance of the hospital to the receptionist and she tells us to go over to admitting. We give that woman Chris’ ID, insurance card, etc. We wait for her to get things together only to find out that hey, we did do admitting paperwork the day before.

So now we are really late to be in Blaylock 5 to have the central/main IV put in. We finally get up there and wait in that waiting room for them to call him to do more paperwork. They put an IV into his hand so that they could sedate him. I think finally at about 9:30ish they had him all prepped and ready to go. So we then began the waiting game. It wasn’t until 12:20 that he got wheeled into the place to get the main line.

I ran to the cafeteria to grab some lunch and a sandwich for Chris in case they didn’t feed him. Please be advised that the cafeteria as well as all of the other shops at Johns Hopkins only take cash. Chris was done with his main line before I even got back to the waiting room.

So now they get him into his room (about 3:30) and start giving him bags of fluids to keep him hydrated. They got the order put in for the HiCy and that wasn’t going to be ready until 8pm but Diane, Chris’ nurse talked them into getting it sooner since she was supposed to leave at 7pm.

At this time I took the shuttle back to the hotel to get a few items for Chris and make a stop at the grocery store up the street for a few supplies. I had to get something to feed myself while Chris is enjoying lovely hospital meals.

So I managed to get back to Chris’ room at about 6:30pm after running all over the place and getting myself something to eat. Diane showed me the family lounge room that has a computer with internet access, microwave, and fridge. The actual hospital rooms themselves do not have any internet access. You have to pay $10 a day to have a TV as well. They could make a killing if they offered wi-fi internet at a cost to the patient.

So Chris officially started his first HiCy treatment at 6:58pm eastern time. It goes into his system over an hour time period. Chris’ major complaints were a bad headache and nausea. They gave him meds to try to keep him from puking but those only worked for a little while. Chris got up to go to the restroom and I think the motion made him yack. They gave him another IV drug to help with that but it was already too late, he has puked. It smelled so bad I though I was going to puke myself.

They gave Chris a few different pain killers tonight. I can’t remember all of them but I know he got 2 doses of morphine while I was there and was pretty out of it. With all those pain killers the main line didn’t bother him anymore and his headache ceased shortly after the second dose of morphine.

I had to leave to catch the last shuttle back to the hotel at 10pm. Chris was puking right before I left and the night nurse had just given him something for the puking.

I was a little PO’ed at the shuttle driver. I called him at 9:40 telling him to be at the Weinberg building at 10. I guess he waited 10-15 minutes at the door for me and then left to pick up someone else. He had my cell number in his cell that I called but did he have the decency to call me when he was waiting? No! So I called him at like 10:10 and he said he’d be back in about 10 minutes. He was talking to a friend on his cell phone the whole way back, didn’t even ask me which hotel I needed to be at (Park or Plaza) and pulled up to the Plaza door. I said “No, this isn’t the right place, I’m at the Park.” He never did ask me where I was going when I got in. The daytime drivers are a lot more professional, but what can you do. If all else fails the cab ride back would only be about $6.

Anyway, it has been a very long exhausting day. It’s 11:20pm here and I want to get back to my room so I can go to bed.

More to come tomorrow!

Chenell

P.S. Dinner last night was awesome! We went to Mick O’Shea’s irish pub and had a killer meal. You would never expect a bar to have food that good!

Today we met with Dr. Hesdorffer to answer any more questions and sign consent forms. He was a very nice guy, from Britain or something, he had an accent. Every doctor we’ve met at JH has been really nice and down to earth. They all seem to think that Chris getting better is a very realistic possibility. They can’t promise anything, but based on the numbers it looks very promising. It has taken every ounce of my being not to break down and cry from happiness. It just doesn’t seem real.

After meeting Dr. Hesdorffer, we went to HIPOP to get Chris’ height and weight measured so they know what dose of Hi-Cy to give him. They also gave me some 2% Clorhexidine Glucoate cloths to wipe him down with tonight after he showers and tomorrow morning before he is admitted for the main line surgery. I guess the kill off bacteria and whatnot for 6 hours. At 9am he is scheduled to have the line put into the aortic arch where they will pump the HiCy and any other drugs directly into his heart. Chris will be on a multitude of medications while in the hospital, the HiCy is only an hour a day. He will be given other drugs for nausea and other stuff. I’ll get more info on that while he’s there.

Our last stop today was with the admitting department. I guess someone ther had been tryig to get a hold of us to let us know our out of pocket costs for this procedure. It looks like my United Healthcare plan pays 80% and we pay the 20%. Our max out of pocket for the year is $4,000. So they estimate the amount it will cost per day (5) and take 20% of that umber. Ours happens to be $4,000. They expected us to pay that upfront. I had NO IDEA and had no way of paying that much. I gave them $980 and they are going to setup payment plans for the rest of it. I think Chris just about had a heart attack and had to leave for a sec. I knew going into this my insurance coverage is downright shit when it comes down to hospitalization. I am sure it would have been cheaper to do it outpatient, but I don’t think it would be as safe. Just think, $4,000 is 20% and the max we can pay, if we didn’t have health coverage it would cost us over $30,000. Not to mention the hotel while we are here at $70/night, I had to take UNPAID time off, airfare to get here, and food. It gets expensive really quick. It will be SOOOOOOO worth it if it works. I will be so devastatingly heartbroken if it doesn’t work. I don;t even want to think that. All is possible with almighty God in control. I hope that the good Lord will decide it is time for Chris to stop suffering.

We are going out to a bar an Irish pub less than a block away for dinner tonight. The ladies at HIPOP told us to pig out because he won’t feel like eating anything for two weeks. Besides, it’s the last time for a while that I am going to see Chris this energetic. I feel it is a celebration as well. There is a very SLIGHT chance (1%) he could die from this treatment so I will cherish every moment I have with him before we start the treatment.

Anyway, I better go before I get myself all choked up. More tomorrow, I will be updating while at the hospital.

Chenell

We almost didn’t make it - we slept in and missed the shuttle. We had to call a cab. We got there about 5 mins late. Not too bad for waking up at 9:15 and having to be there at 9:30. The cab fair to JH isn’t too bad, about $6 from the hotel.

They took about 10 vials of blood, a urine sample, and a nasal culture. That was the grossest of the samples they took. I should of gotten a photo, but I didn’t think of it ’till later. They made him shoot some saline solution in each nostril and put it in a sample cup. Needless to say he missed the cup a few times… eww!

We then talked to Dr. Brodsky about Chris’ history and he made sure to tell us the risks involved, what we can expect from the treatment and answered any questions we had. Dr. Brodsky was really down to earth, will talk to you like a person rather than a patient, and is a hockey fan.

The best part of our day had to be dinner. We ate at Bo Brooks restaurant in the Canton area of Baltimore. We pigged out something fierce. We had three appetizers; oysters on the half shell, steamed clams with a wine sauce, and calamari. As the main course we had a half dozen steamed blue crabs. Yum! We also got a deep fried crab cake to go. Oink. Hospital food is going to suck, so why not? Plus you don’t get seafood like this in Denver, so we are taking advantage of it. Shellfish is really high in iron which is good for anemia. May not do any good now, but we like to tell ourselves that. Our waitress was very very nice and quite talkative. It turns out that a girl friend of hers has just been diagnosed at 26. Such a small world when you think of it. Chris ended up telling her about the treatment for quite some time. He’s good at talking.

I have started a brand new photo album documenting the trip thus far. I will try to update it on a daily basis, that is as long as there is interesting things to take photos of. Check out the new album here.

Anyway, it’s late and I’m still feeling fat and full so I’m going to go for now.

Chenell

I am a little disappointed in our room. The fridge is kind of small, and there isn’t an oven, just a range. Plus I have like 3 or 4 dishes and two pots and no knives… how am I supposed to cook under these conditions? I think I will call the front desk and see if I can’t get some more dishes and cookware. The bathroom isn’t very handicapped friendly, but we’ll deal with it. Chris won’t b able to hook up his Playstation, these TVs do not have any component jacks. The person at the ront desk said they’d get us something, but I haven’t heard anything yet. Otherwise, the room (suite I should say) is nice.
Chris’ fist appointment is on Wednesday and the Thursday he will be admitted to the hospital to have the central line installed and to start the Hi-Cy treatment.

Tomorrow I am off to the grocery store to do some food shopping and then maybe we’ll catch a nice dinner before Chris is feeling ill and has to be quarantined.

Anyway, I need to go and figure something out for supper.

More to come!

Chenell

This is his testimonial:

He believes in the Father, Son, and Holy Spirit.

Whatever happens he thanks God for it. God has given and he can taketh just as quickly. He tells it like it is and by doing so the bible says it is praising God. Always remember good is all around and all you need to do is look. Remember the golden rule, but also remember God makes you strong in front of your enemies and accusers!
Hate evil. Hate the enemy as much as you love God. Satan is a wolf in sheep’s clothing and we need to be vigilant. There is nothing in the bible that says you need to be a fool. Let God be your guide.

He asks that you love each other and remember, everything we do is a tribute to God and only good can come from God, and only God can change evil to good.

He also asks that if you believe in God or a higher power please say a prayer for all the folks out there who are doing worse than him and do not have this opportunity to get better yet. He is praying for you all and hopes he can get you better quicker by doing this.

I have some more info to share about Johns Hopkins and Revimmune. I picked up a copy of Hopkins Medicine at Chris’ initial appointment in January and it has a feature article on HiCy. I just recently acquired the technology to scan and create a PDF file. Read ‘High Time for HiCy?’. It is VERY VERY informative.

I also happened to receive a copy of Accentia Biopharmaceuticals’ 2007 annual report. I have scanned some excerpts dealing directly with Revimmune, read here.

You will need Acrobat Reader to view these files.

I am going to be working on a new permanent section for the HiCy stuff. Until then I’ll keep posting to the blog.

More to come,

Chenell

I am Chris’ wife, Chenell and I’m in charge of this mess now so you better get used to it!

I will be updating Chris’ blog while he undergoes the HiCy treatment at Johns Hopkins.

I wanted to let you know I have posted a ton of new videos in the Photos n’ Videos section. One is even of Chris getting his head shaved!

It’s late and I’m beat. More to come.

Chenell

The endpoint in the clinical trial is to improve disability. I’m not waiting for the trial. Insurance covers it off label, the number one hospital is doing the treatment, so why should I let myself get worse.

The next post on this site will be done by my wife I’m guessing.

Thanks again to all those watching. I can’t believe 200 thousand hits last year ad you still all keep coming. I hope you all are still interested while I get better.

Goodbye to all for now. I will say hi in around three months.

If you are a family or friend please don’t take this personal but I don’t have time for you lol.  When all this is done, we are taking the letters to MD with us and going to do them all because I will be BORED as hell, sick for three weeks, and will finally have time for the two of us to sit down.

Sorry folks but it’s not personal but selfish as all hell.  I don’t want to know how anyone else is right now because I got to take care of me right now.

Please read previous post for HiCy, Revimmune, John Hopkins info.

No date yet but it’s going down.  I’m getting it done.  3-4 weeks.  Going to Baltimore. Living in a corporate housing place for a month.

Gonna throw up and my immune system is going to die… but it will re boot, and be normal again…I should get something back.  No clue how much but I may get something back.

Let’s see what happens!

215 k worth of hits this year. It wasn’t up in Jan and Feb. Thank you all so much for making me a part of your lives. You have no idea what all of you unknown faces mean to me.

I have my first appointment at John Hopkins in Baltimore MD on Jan 9th at 2 in the afternoon. They keep telling me to expect good things but I refuse to. I’ve lived through 2007, and I cannot seem to get it out of my head it’s over.

I don’t know where this leaves me with the folks with the Walkaide, but I hope they understand I don’t want MS anymore lol!

Maybe I can run next year. Maybe.

This is called Revimmune, High Dose Cyclophosphamide, or HI-Cy.   It’s being offered by the John’s Hopkins Institute in Baltimore Maryland.  Within 6-9 months this will hopefully be a viable treatment in multiple locations over the USA.  For now, you will need to go to Hopkins for this.  As with anything MS related, the sooner you do this the better chance you have got.

What will happen to me is this:

I will be sending all of my Medical Records and a new MRI report to Dr. Kerr and his staff.  They will review over the records and then make the decision to allow me in at which time they will call me in for a consultation.  I will head to Baltimore for the consult and for some baseline neurological testing.  I will then return home where I will have blood workups, x-rays, and heart tests to make sure I can handle the treatment.  In the meantime JHI will be going to bat for me with the insurance company getting the treatment cleared BY INSURANCE.  When the insurance company sees this is a one time thing, and much cheaper than all the other drugs a normal MS’er uses, they say “Hell Ya!  Get ‘er Done!”

So when insurance clears it I will get the call to come to Baltimore.  I will need to be there by Protocol for 1 month.  I will be in a hotel.  I hope it’s a nice one.

The actual treatment will be 4 days of outpatient chemotherapy.  This will kill off my entire immune system except for the Bone Marrow.  With the help of a Human Growth hormone and some bags of fluids (plasma and blood I believe) my immune system will rebuild itself within a couple of weeks.  So we know it’s rogue blood cells in the immune system that cause MS and this destroys them as well as destroys the memory of your immune system.

At 12 months I will need to have all my childhood vaccinations again.  For that time I will be on some general anti- everything drugs from what I understand.  Could I get sick?  Yes. The thing to remember is the diseases you get vaccinated for as a child.  They are not very prominent anymore are they?  There is a reason for that.  They are not as common anymore.  The other things your body can combat naturally…AKA the flu, a cold.

Now for the real information you want to hear.  The endpoint is to improve, so if you do not improve, you will definitely know the disease activity is done nevertheless.  Everyone however is showing improvement.  Everyone that my contact has seen.

So I’m stating today to up the workout schedule and the good food intake.  I’m sick as an animal right now but I gotta be better by… oh lets say…NOW!

I expect to be running by this time next year.  I’m not kidding. 

Carrie Trecker at JHI

410-502-2574

My doctor is interested in the HiCy therapy and he is ordering my MRI just in case.

To all you out there have a Happy Turkey Day.  Unless you eat something else.

I’m going to Die, and I hope to be back in three days…Just kidding gees!

The guy is a nice guy. Nothing wrong with him. When my wife went to bed he decided it was time to start talking about her like she was a whore or something. He said things that even if they were true about someone, well, I wouldn’t say it out loud to someone. Let alone to a hubby.

Seriously,it’s not like he said she was fat or ugly. If it was something so clear black and white it would be one thing. I mean sorry, if your fat, your fat. If your ugly you are ugly. It’s not an attack on character.

Well I let it go once and voiced what I thought about it and he decided to say it again. Even corrected me when I repeated it back to him.

So I got up and with the help of my Walkaide I walked over to where he was and had him stand up. Then I took my cane and hit him as hard as I could with it across his ribs.

I feel bad about it today. It hurt him bad. He actually was crying. I hope I didn’t break a rib on him or something. I just can’t believe he said the stuff he said.

So for the first time since I quit doing drugs I’ve gotten myself into a fight. (except for when a girlfriend of ours was getting beat up by her old man) I can tell I’m a different person because this time I feel bad for it. Really bad for it. Just can’t believe how dumb he was.

Simply stated, don’t screw with my wife. Don’t. If she isn’t there to get you herself, I will.

Love you honey!

Looks like I will be living in Baltimore Maryland for a month, hopefully January. I’m going to loose my hair, I may loose my lunch, and I may even loose MS!!

EDSS is how they rank us gimps. I’m an EDSS of 6-7 depending on the day. 10 is dead. 1 being minimal dissability. The girl in the video is now a one I’m guessing. The reason being if you watch her run, she does it in a weird kinda way.

She went gimp almost immediately and had it for 7 years. I got nailed with it hard officially in 2004 three months after I got married. That puts me at three years so I figue maybe, just maybe, I got a chance.

I want to get back into grappeling and jujitsu. I actually was learning from a dojo that was run by ol man Grace and I had to quit because of it. So jealous of the wife I want to go biking with my Dog. I want to stay awake for a whole day and be sharp. I want to come out of this “fog”. I don’t want this constant hugging sensation. I don’t want my muscles to constantly cramp. I don’t want my leg to shake when I put any pressure on it. I don’t want clonus anymore. I don’t want to take over 10 different medications anymore. I don’t want to take a shot. I don’t want to use a wheelchair. I don’t want to use a cain. I don’t want to be afraid of going places because they have stairs. I don’t want to not be able to work out. I don’t want to use the Walkaide to drive because my foot is tired. I don’t want to brake with my left foot anymore.

I want to play drums again. I want to play guitar again. I want to be in the band again. I want to bike again. I want to walk the dog again. I want to work again. I want to healthier than I am now.

Funny, I’m in better health now than I’ve been since HS. I’m stronger than I was, but it doesn’t matter. Can’t do anything with it.

However it seems the recovery is made so much easier for people who have these wants and goals and are healthy now.

I would love to stop taking Zoloft. I would love to know if it’s the disease, and the damage to my brain that made me act so crazy for so long, or if I’m just a dumbass :P. Probably the later ha! Doesn’t matter. IF it’s Zoloft that helps out…cool lol.

So anyhow there is life in a nushell for a while.

Well we had the MS conference in Dallas and it went spectacular! The one competitor, which to me isn’t a real challenger, was parked right next to us! We had people next to us all day and I saw times where we had 5 or 6 people gathered around us and there wasn’t one person at theirs. I almost felt sorry for them but darn it if my competitive nature didn’t get the best of me.

They had folks for Marijuana legalization for medicine there as well. Really anything to do with MS past present future kind of thing. It was funny how people all knew what Tovaxin and Revimmune are. The folk who showed up at this convention were the proactive bunch. Definitely not the folk who sit around and suck and let this disease get them. I saw one woman in a wheelchair that couldn’t move or talk that day, but she was still there!

I has people tell me I was an inspiration. I told them necessity is the mother of all invention. If I wasn’t scared to death I wouldn’t be where I’m at now! I found more inspiration in the woman I spoke of above than I do in me but if I can help get this thing covered by insurance than I’ve done my job.

I’ll upload all the Dallas pics soon! I went and saw where Kennedy took a bullet, went up to the 6th floor museum in the book depository. Took some pics of the grassy knoll and all that good stuff. I couldn’t believe how close that shot actually was.  I could have thrown a rock and hit him in the head if he was going slow!  Seriously, all the stuff you see makes it look so much farther away than it was.  Funny how the grassy knoll is located directly next to a parking lot, and a train yard. I really want to know if it was by the parking lot back then.  The shot from the knoll also seemed farther from the one above too.  (If there was a shot from there) They do not let you take pics in the museum either which I thought was odd as hell. Oh well it was cool.

The food was great from room service too. Regency Hyatt is great place to stay. If I had to pay for it I couldn’t LOL!!!

Talk to you all soon!

CUSTOMER SERVICE IS HORRID AND IT’S UP TO US TO CHANGE IT!!

GO WITH DOMINO’S

By the way…Ray Dunlap from speed suspended again for having a bad mustache!

Now, the Botox, I think they gave me way way way too little. It feels better, but the clonus is still there. Not to mention my Hamstring on my right leg is so tight I can barely straighten out my leg.

We went to the MS walk for the MS center on Sunday. I need to tell you, whoever is in charge of all these walks is probably a very very nice person, but they don’t think this stuff through well.

One, the Walk in the spring has thousands of people show up. Nothing in the paper and nothing on the news. They also schedule it the same weekend as the Furry Scurry. Who in the hell is in charge of media outreach and planning?
Two, we just had a run in Oct. Nothing on the news, nothing in the paper, and they had it on the same weekend as the Denver Marathon. Also, if you look at the weather patterns in this state, May can give you a loop but October is much much more likely to be horrid. Again the same question applies as above.

Well now that my disgust has been voiced I will say have a good week. I will.

After Detroit I had to not use my Walkaide because I was too active with it I think. If I had the thing on 1 or 8 it felt the same. So I didn’t use it for one day and the next day I was fine.

I’m all set for Dallas at the end of the month.

Had my Botox follow up yesterday, and alls well. We will use more next time, because I still have some Clonus left, but it’s much less than it used to be. I need to let her know when it starts to go away so we can judge what to do in the future.

So anyhoo……

Please head into my gallery and see the pictures of Detroit and the awards ceremony. It was wonderful to show people the Walkaide and how it’s helped me, and how it’s helping others.

Spread the word and we can get this thing covered by insurance. Make sure you talk with your doctors, therapists, and everyone medically involved.

Look into clinical trials concerning the Walkaide as well!

I also had an appointment with a Hanger subsidiary to get some new lighter, well fitting shoes. I gotta tell you though the service with these people are shotty at best. I guess Marletta has totally spoiled me. I was told I would get a call yesterday for my shoes after UPS showed up. I happened to be driving by when the UPS showed up, so I stopped in. No one even looked at me. I sat there for 15 minutes and no one even talked to me so I left. I waited all day and I never got a call, nor have I received one yet today. I would think they would like my business!! LOL

Then yesterday I had the fun of Botox in my calf muscle. Botox has some pain involved, not bad at all really, but it does hurt a little. Today I’m fine, now I’m just waiting to see it work. 5 or 6 shots all into the muscles. Couple of them made me sit up a bit lol!

Next weekend we are in Detroit…we cannot wait. We will finally get to Canada. We love getting out of the Country!

They have lost their families.

We could ALWAYS have it worse.

God Bless the families who mourn still, Muslim, Jew, or Catholic.

Father forgive them for they know not what they did.

Isn’t MS fun! So because thats bugging me, and it was still around 80 in the house, I’m one grumpy dude. The weather just broke and the coolness is great, but I’m getting dizzy sometimes now, (not like before) and the spasticity is friggin horrid! No pain tho!!!!!!!!
So just so you all know, even though I’ve been feeling better…I still have MS and I still suck. I’m also still in a lousy mood.

But in the last week somethings have simplified. Genesis is coming to town. Wife may be able getting a better paying job. Some immature folk we know may not be around here anymore, and all we did was spent time feeling sorry for them, so good for our Ora.

Might be getting my immune system nuked with a really high poisonous chemo. Hair falls out and I’ll damn near die. The thought is to try to kill old the immune system and let it rebuild itself fresh from the marrow. The MS cells don’t regrow. 100% reductions in relapse rates. Also, when the immune system kicks in so do some new stem cells. Might need to go spend a week in Long Island NY.
M’eh welcome to a rainy Monday…

–I just found out Innovative Neurotronics is sending the Wife and I to Dearborn, Michigan for a conference on the 28th of Sept.� We loves to travel!!� It’s a whirlwind tour though. In and out.� Be back the next day.� It’s OK though, not a big fan of Detroit.

As you know summer sucks for MS and with the 55 days of 90+ here in Denver I’ve been in hibernation. The cartoon has suffered because of it and I’m sorry but I shake to bad when it’s hot to cartoon. Lesson learned lol.

Good news is tho, the heat is breaking this week back into the 70’s and I generally spring back to life. I’m looking forward to the botox, because I will hopefully be able to start a whole new chapter of rehabilitating myself back. The Walkaide is sooooooo much an improvement but it’ll be nice to see what it’s like w/o spasticity.

I noticed the other day my right lower leg doesn’t get cold like it used to. I don’t know if it’s related to the device, but I’ll take it!

Also, last month we went over 150,000 hits for the year….wow, I don’t know what to say!

The draw back is if this doesn’t work I may need to have a Baclofen pump installed. We will soon see. It’s funny because the Walkaide is doing a great job, and this is really to just compliment what it is doing. It would be nice to get all tight or crampy because I’ve walked to far.

Well the Walkaide works great!!! Let’s see what happens with the Botox!

Any wonder why I try to eat only organic? Bodies got enough to fight, doesn’t need any of those things in it.

I started taking Amantidine again for fatigue. It’s helping some, mostly with clarity. I’m still getting tired and if I get myself into doing something I’m getting tired quicker and it’s all heat related. Luckily it’s supposed to break this week and head for the mid 80’s and I got a feeling I will feel like doing somersaults.

Walkaide kicks butt still. Last week we had a conference to go to for Hanger Ortho where Marletta and I were the dinner entertainment. They said I did a good job I guess no one is yelling at me.

So anyhoo…nothing to report…I want to start cartooning again but with this heat I start and to wander and I get tired

Well we’ll see……

If it wasn’t for this damn clonus and fatigue I would rock. The Walkaide has me out there moving great, but regardless, I get heated up and walking gets hard. I spasm up when I get hot so even tho the Walkaide is working great, i-f I can’t move right, it doesn’t matter.

So they key is keeping cool and a lot of water. If I stay cool I’m much better.

Well we got a grip of stuff done over the week, and I got a grip more to do. You’ll hear more from me prolly next week. I try to it once a week and now that summer is here, well I gotta make hay while the sun is shining.

Peace out till next time

http://www.gregisfishing.com/nd_fishing_reports_2007.htm

Take a look at my vacation pics. The pics you see of me in the outdoors w/o my chair I NEVER would’ve tried before the Walkaide. I’m sorry I’m not posting much but I’ve been doing a lot of things I couldn’t do before. I’m still fatigue and all that but in the mornings and night I’m a lot better because I’m not slinging my leg around.

Folks I’m telling ya, just go to Hanger and tell them you want to try it. They’ll let you give it a go. My leg is getting stronger! I’m going for walks again!!

I have an appointment on Aug 27th for the clonus. It’s called a Spasticity Clinic. They will be the ones to prescribe the Botox. When the legs stop shaking I may even try to bike again.

The second link is for anyone who wants to go to ND and do the best Walleye fishing of your life. The mans name is Greg Schoneck. He is handicap friendly, and he even let our dog come out on the boat! The man showed us a great time and we will never choose anyone else. Seriously…one hell of a guy!!

I’m going to also start talking nutrition with all of you and what is working for me.

I will say my neuro pain has returned in the last two weeks in my left arm. It quit once it got used to working out. On vacation I took a 2 week vacation from regular activity. I wheeled around yesterday a great deal and my arm did not hurt this morning.

I will be starting to do some intense stuff on my legs. I think half of the issues I have with them is they have lost a good deal of strength.

Also, I’m going to start balance training and cardio training.

So nutrition, exercise, mental health.

www.hypnodeb.com She is the lady who got me to quit smoking, and she also gave me a MS self help / hypnosis CD. We’ll talk more in a bit about this.

Oh vacation was so nice!

I had a question about LDN, and I still do take it. It works for sure as far as I care. I quit it to try to get in the Tovaxin trial and I started shaking again. I started the LDN and it went away again. I don’t need or want any anecdotal results so when I get those issues again it was good enough for me.

Plenty of photo’s you will all soon see!

Tired, walking way way to much ;)  Chenell got a shot of me walking up a boat dock with the dog.

Just re-read that last statement.  Cool huh?

Today we drove by where I used to live and a couple of things from the old days. Nostalgia.

We are now in Garrison ND in a modest hotel in the middle of nowhere and it’s great. There is a big field next to the hotel. The dog loves to play frisbee out there. He has never ran after a toy like that. He’s never been anywhere he can run so carefree.

I have sore legs. From walking. Yes from walking. I’ve walked more in the last week than I have in the last 6 months combined.

Pics are in the gallery.

http://www.chrishasms.com/gallery/v/sumrvac07

Even in this heat, the Walkaide helped. Waaaaaay Cooool.

Now I’m going to the Badlands to enjoy the 100 degree heat! But at least I won’t be sweating anything besides the heat!!

Tomorrow we put the Walkaide to the test.

This is a response that was posted to me on a message board I belong to:

Chris,

I think you might know that Tim’s on vacation right now although he has been hiking to the internet cafe in Podunk, Wisconsin for an occasional post when the mosquitos are biting better than the fish.

Tim not only knows more about what you ask but is better at explaining than I am, but yes Opexa’s hope is that in the near future you and 95% of the MS population will be able to benefit from Tovaxin.

From what I’ve understood Tim to say in the past is that everyone produces mrtc’s (including people who don’t have MS).

I’ve gotten the idea that mrtc’s can be detected in everyone and that the vaccine can be made for everyone, but the lab has to be able to expand the numbers of those mrtc’s isolated from your blood donation to (in the IIb) 35-40 million within the time confines for dosing which were specified as conditions of this clinical trial.

For the people who didn’t make it into the clinical trial it seems that certain things “mask” some of the mrtc’s from lab technicians so that enough mrtc’s can’t be replicated within the dosing schedule. Others it seems have mrtc’s which for some reason just replicate slowly and keep the lab technicians from creating a dose in the required time.

When/if Tovaxin makes it through the clinical trial process and it’s confines and gets the OK from the FDA I think you’ve find a markedly more favorable situation for the patients even if the technicians at Opexa don’t make a single improvement between now and then.

I’d have to guess that as things currently are Opexa could make at least a dose or two a year for anyone with MS (at this point I can only say RRMS) and I would also have to guess that a dose or two per year of Tovaxin would be markedly more effective than anything else available AND wouldn’t require constant injection, feeling like crap and worrying about what it’s going to do to you in 20 years.

Bob
_________________
Wife diagnosed with MS in Feb. 2006 and is a participant in the Tovaxin IIb clinical trial.

Cool huh? Ya I thought so!

Also, do your exercises and eat right because if you are not healthy, you may not be one of the first to get it!

Well I’m loving the Walkaide. The muscle in my leg is getting stronger. I’m going to look into getting some Botox shots in my calves to help to relieve the clonus. When I get back from vacation I’m going to start doing balance and leg strengthening exercises. Up until now all I’ve done is concentrated on my upper body so as you will see soon, I look great! LOL It’s helped with and MS related symptoms in my upper body. Now I need to look lower.

I’m talking to a Karate Studio in Denver called PMA. Reason being is I loved to grapple. Now that I’ve gotten stronger I’ve been able to do a lot of things I didn’t think I could anymore concerning grappling. Well I’m hoping to develop a self defense course with PMA for folks with disabilities. The reason I use these folks is the owner is trained by the Grace Dojo out of Brazil. These folks taught us before the MS and we know just how good they are.
We got some more pics, and some video too I think. I will check with the Mrs. and see what is going on there. This month with the trip and birthdays and all this stuff we have been busy. At the same time if it wasn’t for the mobility the Walkaide is giving me I wouldn’t be doing a good deal of it. I mean I can walk in the grass again.

However the Walkaide does not help when you drink to much. You would think we won the lottery the way we partied. I officially was bombed lol!

Last night was the Police concert. A really, really, first class, dynamite show. Sting has aged well, and so has the drummer. The guitar player has gotten a bit older. Well a lot lol. We spent like 60 bucks on food and destroyed our diet. I mean come on! How can you pass up fresh roasted nuts, cheese steaks, and Bloody Mary’s?

So now as soon as I’m done here I got to go exercise and get tickets to Genesis in Oct. I hate to say something this cruddy but, “Membership has it’s privileges.” When your a gimp and need HC seating you are almost always guaranteed a seat! And we had no one in our way!!

Glad to report it’s pretty obvious to see who got the Tovaxin and who didn’t!

Well I woke up this morning and my stomach is not nearly as tight as it was. I also walked around a bit without the cane which is really nice and a sign things are on the upswing.

I haven’t been wearing the Walkaide. The nerve endings were so alive the last couple of days the last thing I needed was a shock of anything lol. I’ll have it back on today though because I do feel better.

We got some more pics we are going to be sticking up. We went to a BBQ on Saturday and I actually went out into the lawn and was walking around. It was so cool!!

I know some of you HATE walking in grass

Anyhow, in Denver everything is 2 to 3 times more expensive than it is there.  We are going to be staying on a Lake Cabin in MN and getting a boat for the same price it costs to stay in a nice motel in Denver.  We are saving a bundle all over this trip.  We’ve joined travel clubs, gas clubs, and hotel clubs all to save as much money as possible.  Besides the obvious reason to save as much money as possible, it was also for a very good reason.
We / I wanted to show my aging grandma a meal like she had never had.  We wanted to take her and the family to a really posh restaurant in Fargo.  I won’t lie, it’s like a 500 dollar meal.

I haven’t seen these people in 10 years, and will not see them in another 20 years probably.  There is no way I will ever be able to attend a funeral, so I wanted to make this meal real, real, special.

Well, I’m now being made to feel like my mother.  A money hungry woman who absolutely loves to flaunt it around.  These people don’t realize how long this has been planned, how much research I’ve done on lodging, or how many deals I’ve cut to be able to afford this.  It’s not like I’m rich.  It’s not like this is something I do every week.

I gotta tell ya, right now, I’m about to say the hell with them all because the fact they even tried to compare me to that woman makes me not even want to see them.

I tried to do something nice and now I feel like a mugger.  Damn!

NO I”M NOT TALKING ABOUT THAT EITHER!