My First Real Outcome Measurements

Posted: February 12, 2014 in ALS Related
Tags: , , , , ,

The outcome measures I’m writing about were documented, but have not been officially published.

I had my first real outcome measurements since my stem cell surgery last week and the feelings are difficult to explain. Overwhelmed doesn’t do it justice.

I’ve mentioned better dexterity in my hand allowing me to sign and communicate much easier with my son.

I’ve mentioned I was using my ventilator with AVAPS setting less.

I’ve mentioned the ability to project my voice and I don’t become hoarse as quickly while talking. My voice was almost always better early in the day when I hadn’t used it much. There wasn’t any specific testing for my speech. Some people say they never noticed it being a problem, they just didn’t talk with me at the right time. I can be heard louder and for longer now without the hoarseness.

There was specific testing for the things I’m mentioning here and more.

I had incredible results and I’m going to explain the changes the best I can.

While doing my daily range of motion exercises, I started noticing myself doing it with more ease than before surgery and  I felt a new sense of strength. Just the way my left side started taking over my right side as it weakened without my initial awareness, when my right side began improving, it began taking over old roles without intention. I just started noticing myself doing things again. Even after I was very aware this was happening, there was a fear of saying so, and a fear of being proven wrong. I worried about giving others with ALS false information, false hope. I was really shocked when I started noticing  more muscle mass in my right forearm. My husband could see and feel it  but kept denying it saying muscle can’t grow that fast, especially without working out, which I don’t do since my ALS diagnosis. I think he had the same fears of being wrong no matter how obvious. I’ve always had great upper body strength for a female and I worked out and had obvious forearm muscles. My left was getting smaller but my weaker right was pitiful. The once large, steady protrusion of muscle when flexing had reached the point of about the size of a walnut and my arm would tremble at the slightest attempt to flex and feel sore while trying.

My husband finally couldn’t help but acknowledge my muscle returning while rubbing coconut oil on it. my right arm had been  becoming progressively limp and smaller. After surgery and time I could hold my arm and turn it better and he had to admit seeing and feeling the muscle and strength returning. ahh… sweet validation. We both had it drilled into us that this phase of the study wasn’t focused on improving my condition. The word improvement was avoided. Nobody, for various reasons, wants to give a person in a study like this and in this phase the slightest chance of false hope for good reason.

When it came time for my strength testing, as nervous as I was, I knew I was stronger and did I ever prove it. Some results were really impressive. In a couple, my right arm actually beat out my left. I had been  losing my wrist strength fast. There’s a test of placing your forearm on a hard flat surface and lifting your hand straight up at the wrist. The force it takes to push it down is measured with a dynamometer. Before surgery I struggled trying to not let my fingers bend down when lifting my wrist and my hand went down consistently against less force no matter how hard I tried to hold it up.

This time I could lift my wrist keeping my hand upright and fingers straight. I don’t know the exact number but it took a lot more force to get it down. That was only one of several glorious moments of proving my strength to myself. I feel totally at ease saying I have a lot of strength back.

My breathing scores improved several numbers which is absolutely great. In the realm of ALS, I already had descent breathing scores. It always shocks me to hear of a person’s being in the twenties range and even lower, I can’t imagine that feeling, I think low 70′s, maybe high 60′s, was lowest score I’ve had sitting up.  With getting highest of three FVC tests, with great effort, I was maintaining low 80′s using everything I had. I know I wasn’t breathing that in daily activity.

I expected to make all three in the 90s. They were all in the higher 80′s and better than before surgery. Not making it to the 90′s range doesn’t take away the improvement which just doesn’t happen in ALS and breathing. It has been enough to notice a difference. However, I plan to use my ventilator more often with the slightest feeling of need. I’ve said before it’s my opinion early use of non-invasive ventilation, (NIV) helps preserve breathing longer. I was lucky to have breathing support at a very early stage, right at the time my scores indicated a drop when on my back and a need for support. Many wait much longer before having help with NIV.  I know some aspects of ALS are more aggressive in different people no matter what you do. In my case, I strongly believe early intervention for my breathing made a difference in the speed of decline and think it should be taken serious in every patient.

Sometimes I look in the mirror and see improvement in my face muscles. Other times, definitely not. I think, like my speech, the more I use it the worse it gets. There is definite improvement in my speech. The jury is still out on my face muscles.

I think it’s important to say my arm strength isn’t like before ALS. It tires much faster and it’s not quite the same feeling. There are so many muscles that you don’t think about that compensate. My way of expressing it is having a feeling of being patched up. My new strength is different and I adjust accordingly to make it work, like holding my arm at different angles while doing tasks. It doesn’t bother me at all. I’m happy to work my fork through something I couldn’t a few months ago. It may not make for great table etiquette, but that’s never been an extreme concern of mine.

I can turn door knobs easier, communicate with my son easier, use both hands at the same time better, and several other things. It’s absolutely wonderful.

I have written about positive things since my surgery, even before testing. I think it’s only right that I mention any negative things that may or may not be associated with the procedure.

I have been dealing with extreme fatigue. I had fatigue before surgery but this is a new level. Some days I just can not accomplish much of anything. It’s not from lack of desire, my body just won’t or can’t cooperate. My humble opinion is that it is already working pretty hard and I look forward to having fewer of these days.

I’ve never been one to have a lot of headaches. I go through days of piercing headaches that follows a path from the back of my head, then covers about a two inch line up the side/top of my head ending at my eyebrow where it gives the sensation of pushing my brow down. Sometimes I’m sure it’s down but my husband assures me my eyebrow is where it always is. This isn’t constant but will certainly change a day’s plans.

My neck is still pretty sore at times. That may seem naive considering it was such an invasive surgery, but I have fully healed and I expected any neck pain to go away after healing from surgery. This, right now is my least bothersome. I have to put my effort in how my neck is positioned while sleeping and if I sit the wrong way too long it gets very stiff. It take a few minutes of slowly moving my head side to side and up and down and it’s usually fine after a couple of minutes of that.

One more thing of which I have no idea of whether it has to do with surgery, but I’ve been dealing with some extreme insomnia, this is likely not due to surgery but it didn’t start until after so I felt it is worth mentioning.

Lastly, there are the immunosuppressant  drugs and their side effects. I’ve had mine tweaked some, but have had no major problems.

Not any one or combination of negative things I mentioned would cause any reluctance in me having the procedure. It has proven more than worth it for me.

I feel it’s important for me to say I am speaking only for myself and my experience.

As much as I am grateful for all this, I never stop thinking of everyone with ALS. This study has shown improvement in phase l and phase II. The FDA did approve a fast track process in phase ll which will be completed with full report hopefully by December.  It’s proven enough in my opinion to have this moving even faster. There should be no delay in moving forward and available at more centers so more people have this opportunity. It has been proven to help people including me and this is why I’ve felt compelled to share my experience and raise awareness about it. It is Neuralstem, Phase II, Open-label, Dose Escalation and Safety Study of Human Spinal Cord Derived Neural Stem Cell Transplantation for the Treatment of Amyotrophic Lateral Sclerosis study I’m in.

I haven’t been cured, I’ve improved in areas and have no idea how long it will be before I start declining in these areas again. By continuing with a larger groups of people, we will learn more. We can’t stop or slow down now. It has shown to have too much potential.  I’m not saying it should only be this study. Any trial that is showing this kind of positive results show be put in the fast lane with a larger population of ALS patients involved. I speak of this study from personal experience.

Thank you for reading, I’ll be back with more of my experience.

Until next time, take care,

April

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Comments
  1. Joel says:

    I am so glad that your tests validated your improvement. That is wonderful. I also want to let you know that your compassion and concern for all people with ALS comes through loud and clear. All the best to you.

    • aprilals says:

      Thank you, it was great, there’s still work to be done with no slowing down. We have made progress! I think I’m like most with ALS. We know so many and for so long people have been fighting this losing battle and we want to win together for all those behind us and those to be diagnosed in the future. It will happen.

  2. April,
    Great results girl, I knew it was going to be good. Congratulations. Keep fighting.

    your friend,
    Richard Roehl

    • aprilals says:

      Thanks, it was one great day. I enjoyed it but it’s not the end, it’s the beginning of the end. like you said we have to keep fighting. ALS is relentless.
      April

  3. Bob Powell says:

    Excellent results and another excellent blog, April. Keep up the great progress, April. I know it doesn’t come without a lot of your own personal effort.

    Kindest Regards,
    Bob

    • aprilals says:

      I can’t wait for more great results for more people. Some blogs I sail on through, but a lot are tough. I guess I just want people to understand me, to get me, which can be hard at times for me with this topic. It’s all very worth it though. Thank you.
      April

      • Ann Trent says:

        This is exciting April . My doctor encouraged me to do this trial, but they had quit recruiting. I am watching with great interest. My left hand is affected now. I was diagnosed may_june 2013.

  4. Ok So Far says:

    April, this is exciting news! Thank you for sharing both the positive and the negative experiences. I am so happy for your increased strength. Let’s hope the headaches and other problems go away soon. Keep us posted on your progress.

    • aprilals says:

      Hi, I felt it important to let the negative be known as well. I want to show my excitement for this but I don’t want to give the impression it’s all been a bed of roses. I enjoy reading your blog as you take this journey as well. I have several people I need to catch up with. Stay strong and best wishes.
      April

  5. Great post, April! So good to hear of your improvements. Have you tried sleeping pills?

    • aprilals says:

      Thank you. Yes I take a sleeping pill every night. For about a week now, I suddenly can’t hold my eyes open at about 11:00 and I’ve been waking with a good night’s sleep at about 8:00. I have no idea what caused the change but It’s nice. I can now watch my favorite morning shows like, Live with Kelly and Michael, The Doctors and The View. I hope it lasts! April

      • I am glad you’re sleeping well. Exhaustion is one of the most frustrating aspects of ALS. I cannot sleep without a sleeping pill because it’s so difficult to get comfortable – muscle cramps, twitching muscles… I’m sure you can relate. If I get tired during the day, a cup of tea usually helps.

  6. Cliff Langmaid says:

    Thanks for sharing. I am an fALS patient in Vermont. In two weeks I will be receiving five immunosuppresion drugs at Mass. General. Your incouraging results have given me great hope, even though I will not be getting the cells. Thanks and fight on!!

    • aprilals says:

      Hi Cliff,
      You’re very welcome and I thank you for reading. That’s great you’re in that study. I’ve read a lot of positive things about it. Hold on to that hope and we’ll keep fighting together! April

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