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