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The much awaited post
May 20th, 2008 by Chenell

I have been meaning to sit down and write now for the last week or so. I know everyone is wanting to hear how Chris is doing. We have been so busy! My new full time job is as his personal assistant keeping his schedule straight and keeping track of his work outs. Chris’ full-time job is rehab. Chemo was the easy part.

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

7 Responses to “The much awaited post”
  1. Kathy Says:
    May 21st, 2008 at 6:49 pm

    Keep up the good work, it will all be worth it!

    Kathy

  2. pvns2005 Says:
    May 21st, 2008 at 9:15 pm

    Ok guys I just got back from JH evaluation with Dr. Kerr and Dr. Brodsky. Donna has already called me and said that medicare is going to cover my in hospital stay. she is still working on my IPOP coverage with medicare. They are already wanting me to come bake in three weeks for the HiCy Treatment. Talk about a quick response. I just got home this morning at 2am. I have to do some fast planning to get there in three weeks but I have waited for 11 years so I think I can get it together. send me an email when your online and it will alert my phone so we can chat..

    MS BE GONE..

    Chris S.

  3. pvns2005 Says:
    May 22nd, 2008 at 11:51 am

    Found out from Donna today that the IPOP HiCy after care is covered by Medicare as well. looks like we are ready to rock and roll.

    Chris S.

  4. Kathy Says:
    May 25th, 2008 at 8:50 pm

    how is this going so fast for you guys. I sent my records 2 weeks ago and have not found out anything yet. Lucky ******.

    Kathy

  5. pvns2005 Says:
    May 26th, 2008 at 8:03 pm

    Kathy,
    Persistence. I buged them almost every other day til I got my evaluation appointment. After I met with the Docs they asked me when I could do the HiCy and I said “ASAP”. I also explained how I was pulled from the Tovaxin extention trial for safety reasons which tells me my body once again would not take to the vaccine and I explained to them that every treatment I have tried has done nothing. So they asked me “what about 3 weeks”. I said give me a month to work everything out and I will be there. My EDSS is a 6 as well. that might have been a factor.

  6. Kathy Says:
    May 26th, 2008 at 8:07 pm

    Thanks Chris, I will call them tomorrow. By the way how do I find out what my EDSS is?
    Kathy

  7. pvns2005 Says:
    May 27th, 2008 at 9:13 am

    If you use any kind of walking assistence like a cane or walker you are a six. If you don’t use ny walking assistence then you have to be graded by your neurologist.

    Chris S.