What Has Taken Me By Surprise

Posted: May 15, 2014 in ALS Related

Today I feel great except for a little soreness from using my upper muscles more than usual. I am not complaining. This is an unusual  thing about having more strength from my surgery. It’s there, but when I us it too much, which isn’t hard to do, I’m very sore. I can live with it though, trust me.
There are a several stem cell treatments going on right now. To clarify, I’m in the Neuralstem, open label, phase II safety and dose escalation trial. I received 4,000,000 stem cells directly into my cervical spinal cord. This is the best place as far as survival because the hope is it affects the diaphragm muscles which keeps you breathing on your own if they have improved strength. My breathing has improved some.

I want to share something new. I’ve been taken by surprise by  my leg strength improvement. This has shown true by testing, it’s certainly not just a feeling. I wasn’t expecting this great benefit. I walk some with my walker during my daily range of motion exercises, but no easy stroll by any means, also a short distance. My right leg especially has been very weak leaving me to  compensate with upper body strength, mainly left side, It hasn’t come easy or wasn’t safe for any real distance. The leg strength came on very unexpectedly. Oddly, what I’ve experienced so far with my new found leg strength is I still can’t walk right, or for any real distance. I still do it with my daily exercises, however, I don’t use my walker. Tony is usually right by my side. Don’t get me wrong, I have nothing on Frankenstein. I’ve said before about the strength in other areas. It feels different, not my old self. I have to compensate for the changes.

My right toes are somewhat curled under, which doesn’t help. I have dropfoot on the right side and I can lift my foot slightly more. I can easily see breaking them trying to walk barefoot. I don’t need that so it’s shoes with this exercise. It also doesn’t take much for the fatigue to hit my legs and they are back to baseline weak and they ache, so I’m careful not to overwork them right now in fear of losing what I’ve gained. Since surgery, even before I noticed they were both stronger, they ache. That’s the only way I know to describe it. With or without exertion, they ache a lot. I like to think this is them improving, but that is absolutely not a certainty at this time, just a hope, and a hope they continue gaining strength.

I’m far from taking jogs but the stem cells injected into my cervical spinal cord have also had a completely unexpected affect on my legs. At this point I don’t see it turning into me walking out and about on my own, but it does give me the benefit of moving them and longer ability to bear weight and transfer on my own. Longer independence in any way with ALS is a huge benefit.

I have hope for all clinical trials for ALS right now, but with my experience in what I’m participating in, I stand firm in my belief that these particular stem cells are going to be our first truly beneficial treatment. I think there will need to be an easier and less invasive way to get the stem cells in the spinal cord for it to be an option for the masses. There also needs to be time to see how long the benefits last, as well as other things that need to be better understood before it’s predictable for each individual. Of course that’s the job for the great researchers, and they’re getting closer. I also still believe we need to hurry! Until there’s a better way to deliver and even be positive on who will benefit the most, anyone who passes the inclusion criteria should be able to have access to this surgery. I am not the only person to have proven changes. With that information, I think it’s a terrible injustice to tell a person they will have to wait. This is likely to result in leaving their loved ones to mourn their death while watching and hearing of others benefiting.

It is possible, and they will and should be informed they may not benefit in any significant way at all, and can even be harmed or die. This is still a very new surgery and the first to go into the gray matter of the spinal cord. Nothing to be taken lightly. Having ALS affects the benefit to risk for many patients and they should still have the right to try if they so choose.

Until next time, take care.

April

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Comments
  1. Hi April,
    Thanks alot for the good news. “Keep on Truck’n”.
    You’re in my thoughts.
    Richard

  2. Jeanne Chandler says:

    It sounds like good news to me, April, keep your spirits up! On May 2nd I got my actual ALS diagnosis at Johns Hopkins. I’m now on Rilutek and have a screening test for their clinical trial on the impact of exercise on ALS in a few weeks. I’ve also been moved to their ALS clinic, so I’ll be with all of the support staff, therapists, etc. On the day before my diagnosis, my husband was told that he has Lewy Body Disease, a form of dementia somewhere between Alzheimer’s and Parkinson’s. We knew he had dementia, but now we know which kind.

    We’re moving into a continuing care community in early June, which is closer to Hopkins and will also make life easier for us. Fortunately, I am not yet disabled, my primary issue is my speech and the loss of use of the fingers of my left hand. Dr. Maragakis says the progression of my disease is slow, thank goodness. We will continue to care for each other as long as possible, with the assistance of our children. I am very interested in the results of the Neuralstem trials and hope to be able to participate If Hopkins gets FDA approval for their own stem cell trial. Keep up the good fight!

    Jeanne

    • aprilals says:

      Jeanne,
      That’s great news! The diagnoses of you and your husband isn’t great, but now you have a definitive diagnosis for yourself and can have more information on your husband’s condition. It looks like several things have come together giving you a chance to think straight yourself for a bit. I will keep posting and definitely continue the fight. Please keep me informed.
      April

  3. Teri says:

    Hi April thanks for keeping us up on your process! I received your blog but it seems that part is missing from the middle. If so, can you forward the missing content?

    Thanks so much!

    Sent from my iPhone

    • aprilals says:

      Teri,
      Sorry, I don’t know what happened here, not even a title!
      Thanks for letting me know. Should be easy to fix. I’ll give it a try now, if I have trouble, I’ll have it fixed by the end of the weekend. Thanks again for letting me know and thanks for reading my blog.
      April

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