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We’re almost at the 6 month point now…
September 7th, 2008 by Chenell

September 17th would have been Chris’ six month follow-up. Due to our current financial situation we will have to postpone our trip to at least December. Chris will still be getting an MRI done sometime this month and have that sent to JH for review.

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

6 Responses to “We’re almost at the 6 month point now…”
  1. Diana Cornwell Says:
    September 7th, 2008 at 9:48 pm

    Wow, I am very impressed and it gives me much hope. Lermittes-does that feel as if something is crawling down your back? I constantly feel like that and I have been lately in so much pain..
    Bless you both and I will be checking in..

  2. Chris S. Says:
    September 8th, 2008 at 9:42 am

    Hi guys and gals,
    Going for my three month post HiCy MRI in two weeks. I cannot wait to see it. My Nuerologist is more excited than I am. He runs a MS clinic here in Bama. I will let you know when I get the MRI, EDSS and MFSC results in two weeks.

    Chris Y,
    It’s great news of all your improvements and you getting the word out.

    Taladega here we come baby…

    Chris S.

  3. Lew Says:
    September 8th, 2008 at 10:04 am

    Keep up the hard work bro’. I know you want it to all be gone, but it sounds like you are doing better. I know the grocery store thing also. I can’t do it unless I’m wearing a diaper, a knee brace, and am vertigo free. 3 things that rarely happen at the same time anymore :). Keep it up man, you inspire us all. It’s funny how MS has screwed my knee up also. My doctor explained how the small muscles and ligaments that control so much lateral movement atrophy and pull things out of place. It hurts like hell! It feels like standing straight it is hyperextended. Thanks for chiming in on ThisIsMS when you see a place to correct something. Right now we have a DH on there who wants to argue with everybody. Oh well, his unhappiness is his own punishment I guess because the way he acts, he can’t have many friends!

  4. Kathy Says:
    September 9th, 2008 at 7:44 pm

    Wow Chris ! How wonderful. All that hard work is paying off. I do not know you all that well but you have to be a great guy to be such a inspiration to all of us MSers. Keep up all the hard work.
    Kathy G

  5. Roberta Says:
    September 15th, 2008 at 7:49 pm

    Chris, I have been watching you for a few months now, and you have given me the first real hope I have had in years. I am currently taking monthly Sol-Medrol infusions, which are taking an incredible toll on me, and I still have latex gloves on. :)
    I want to applaud you for being so public with your struggle- and victory- with all of us. As soon as I can receive Revimmune, I want it. I am tired of managing this disease; I want to be cured. I have too much life to live to be handcuffed by this disease, and based on your blogs, I know I have a kindred spirit with you and your wife.
    My husband and I are nervous (he more than I) over the treatment, but hearing of your progress eases the apprehension. You are an inspiration, and I thank you!
    God bless you!
    Roberta

  6. Mary Says:
    September 19th, 2008 at 7:58 pm

    Chris & Chenell:
    Your story and your foresight to document the HiCy experience have provided me with the green light to go ahead with this at Hopkins.
    I am waiting for our 10 year old daughter to finish soccer season–
    My initial fears about losing my hair, getting very sick- are miniscule compared to the liberation of movement, freedom, and a whole life again. We are all braver than we know. Thank you, thank you-and prayers for the doctors at Hopkins who have made this possible.