Oh Snap!

Posted: April 4, 2014 in ALS Related

Most people snap their fingers without thought and don’t lose the ability. If the ability is lost due to a disease like ALS, it doesn’t return. I lost that ability because of weakened muscles in my right hand. Hey ALS: I can do it again – Oh Snap! I could still snap my left side but it was getting more difficult before surgery. Now my left hand is almost as good as before ALS. Every new little discovery of something I get back is like a magical moment for me.

Sometimes I think back to before surgery. My husband and I discussed it quite a bit. The risks and just how invasive it is. In my mind I always knew I would go forward with it. When you have ALS, it’s hard to turn anything down, because you know what’s ahead. Looking back before surgery, when I was constantly being told of the risks, including waking up completely paralyzed or possibly not wake up, it’s easier to think, wow, I had no hesitation? Having this offered for any other condition, I would have passed. I wasn’t about to let any opportunity against this disease pass me by and I’m so glad I didn’t let it pass as well as thankful for being lucky enough to have the choice.

I hope more than once daily that this study gets the go ahead to be sped up and approved for more people to be injected. Every surgery is a risk and as invasive and groundbreaking as this surgery is, it has proven to be as safe. I don’t know how everyone has done with it, but I know I’m not the only one who has experienced great success from it that began in phase l. I think we need to have more people injected to have more solid proof of safety and efficacy. The sooner that’s done, more people will have this option. We’ll then need to keep observing, as now, how long the benefits last, who benefited the most and why. I hope the FDA feels the same by the time phase ll is over. We need to move right on into phase lll with a larger amount of patients.

There are other stem cell studies going on for ALS at this time and I wish them great success. The study I’m in by Neuralstem inc. uses spinal cord-derived neural stem cells, the right type of stem cells needed for us as it has proven correct in my experience. These stem cells get right to work with the job needed to make our muscles connect again with orders. That’s what happens with ALS. Motor neurons progressively degenerate until their death. At this point there is nothing sending the message to the muscles to move so they atrophy and eventually become completely useless leaving us paralyzed.

These stem cells are the only thing that have been injected directly into the gray matter of the spinal cord, ever. It was a scary risk to take, but with ALS risk has a new meaning. I’m just so glad Neuralstem took the time and work involved to initiate the study in the best way. I’m thankful for my neurologist, Dr. Glass, for his research and offering this new procedure to his patients, receiving the stem cells and preparing them at the right moment for delivery in the operating room for each injection the neurosurgeon, Dr. Boulis made. I’m also thankful for the phase l patients willing to be the first while being told how it’s only for safety testing and nothing close to this has ever been performed. Knowing the risks and going on the front lines, that’s bravery! It was risky and scary for patients and  everyone who took the risk going to this new place with and for us. I’ll always be thankful to everyone involved in taking the first steps in this. It’s been a long journey. One with great rewards.

Am I as I was before surgery? No, but if I stayed here, even if just with my upper body and breathing, I can certainly continue to adapt to this. There is no doubt I’ve been set back to earlier progression. I’m coming up on six months after surgery and just discovered my returned finger snapping ability, so there’s no doubt it was worth it to me. Lets work fast on giving everyone the opportunity I’ve had. It may not seem that important for me to have the strength and control to snap my fingers again. It takes more than you think and the fact that I couldn’t do it before means I’ve had a lot of improvement involving several muscles. Many daily activities were becoming much more difficult and it was only getting worse before my stem cell implantation surgery. It really is much bigger of an improvement than it first seems.

I’ve gone on enough about my results. It’s bitter-sweet posting about it. I know you all facing ALS want to be happy with me and others known to benefit. I also know you and your loved ones naturally wish it was happening to you right now. I feel the need to apologize, but inside I know that’s not what you want, and I know many of you appreciate the experience coming from a patients perspective. I thank you all for reading, and allowing me to tell about it as much, if not more, than you appreciate reading it. Thank you to all my readers facing this terrible disease and sending me encouragement. I truly believe we’re in this together and never forget, we’re stronger in numbers and that means a lot when we need to band together for something we all believe in. I have a feeling this study will be continued rightly and swiftly, I’m on the team if we need to make sure the FDA hears us in the States. I’m on the global ALS team as well.

I’m coming up on six months post surgery and with that I have another surgery coming up. It’s not ALS related so I wasn’t going to mention it. It does affect my life with ALS so I’m choosing to share it. My treating neurologist has given his approval understanding it is truly a quality of life issue for me. I don’t need to take any risks waiting. There will still be extra precautions taken for the surgery since I do have ALS. It won’t be a non-hospital, walk out surgery. I have a very competent surgeon and it will be performed in a hospital. I planned to bring it up in my next post but now I can’t just leave you hanging. I have a couple of things I need to get off of my chest – literally. Shortly after my next Emory appointment coming up soon, I’ll be having breast reduction surgery. So I brought it up in this post. I’ll tell you more about how it all came to be next time. This is not an, I want this surgery for cosmetic reasons. It will improve my daily life now and certainly in the future. If you look at my photos page, you will see some of me at about 100 lbs. My breasts may not look large there. Even then I went to great measures to strap them in. I’m larger there than I look. This is all for another post.

I’ll probably update several things I haven’t lately since I’ve been so focused on my stem cell results. I will still mention any changes that I notice since surgery, anything. It’s all important.

Just a few days ago, 3/28, made one year having my blog which was one year after my local neurologist told me about ALS after an EMG and sent me for confirmation with neurologists specializing in ALS. One was Emory ALS Center, where I chose to stay. One of the best choices of my life. If you haven’t already, please read about my experience being diagnosed with ALS. You can find it under, About Me/My Diagnosis Experience.

Thank you for taking the time to read my blog. I will be back with more.

Until next time, take care,

April

Advertisements
Comments
  1. Joel Lord says:

    I’ve loved every one of your posts April. Thanks for taking the time and for making it as real as you do. Keep on going!!!

    • aprilals says:

      Thank you. When I sit to write a blog I try to put any worries out of my mind and just write what I want to say. Sometimes easier than others, sometimes I have to make myself hit publish. I just want to share my experience in an honest way and being myself. As hard as it is sometimes , the positive feedback I get, like this for example, tells me to keep doing it my way. Thanks for the encouragement!
      April

  2. Jeanne Chandler says:

    What wonderful news, April. I had my first ALS symptoms one year ago today, when I found that I couldn’t hold a needle in my left hand to work on my Japanese Embroidery. At about the same time I noticed that if I ate ice cream my speech became slurred. Guess what? The EMG showed the muscle loss in the left hand and I was referred to Dr. Nicholas Maragakis at Johns Hopkins, where I was told that I didn’t have sufficient symptoms for an actual diagnosis. After lots of tests, it’s still not a definite diagnosis, but I’m going to Hopkins every 4 months and doing an exercise routine 3 days a week with his approval. He is starting a clinical trial soon on exercise for ALS patients and I’m doing my own “dry run”. Three days a week I use an elliptical machine for 18 minutes and do about 20 minutes of free weights for upper and lower body. At my first 4 month check there was a “miniscule” deterioration of my left arm and no change anywhere else, except my tongue. Thank goodness they don’t include that in the EMG! I’ve actually increased my elliptical time from10 to 18 minutes and my reps with the weights by 50%, so there’s no negative impact from the exercise so far!

    I’m “too old” to have ALS according to my sister, a nurse, when I told her what we thought was wrong. I’m 75, but have exercised and been very active all of my adult life and think maybe that has given me a little better chance to slow down progression. I intend to ask Dr. Maragakis to help me enroll in one of the Neuralstem Phase 3 trials! I’m so happy to hear about your progress. It gives me hope for my own future, too. My husband has mild cognitive impairment, so we are moving to a continuing care community in the next few months, as soon as we sell our house, and it’s an overwhelming chore with us both having a health issue. Fortunately, we have 4 sons and 9 grandsons, plus 1 daughter and 3 granddaughters, to help us out. (Lots of testosterone when everyone is here!

    I look forward to your next post – and hope for more good news!.

    Jeanne Chandler

    • aprilals says:

      Hi Jeanne,
      I remember your story from a couple of posts back. I remember replying. I need to check to make sure it posted. I know it’s very frustrating to be in the diagnosis period. I hope you’re able to be in the best study for you. I can only imagine it being difficult selling and moving while you and your husband both are having difficulties. If I remember correctly, it’s your dream home on the lake. I hate to hear this is happening to you both. That large family will come in handy.
      Wishing you the best and hope you continue updating.
      April

      • Jeanne Chandler says:

        Thanks, April. I didn’t get a reply to my first comment, so I’m glad to get this one. You remember correctly, our dream house on the water in Southern Maryland. I’ve really enjoyed reading your blog, it’s comforting to hear about others face the same problems and how they deal with it, We had a good day today with all of our sons, daughter, and their spouses and our grandsons, who all helped with getting the house ready to show.

        I sure hope you can participate in the next Neuralstem trial!
        Jeanne

  3. Cliff says:

    Great news April. Third week into drug study, no side efects except very tired .First week with all the Predesone felt really good. Two more days and no more Predesone. I think my body is trying to adjust to the other drugs and that is why I am tired. Still working out lower body three times a week, but have to push my self harder. Return to Boston in ten days for thirty day check up. Good Luck April

    • aprilals says:

      Hi Cliff, I agree, All the medication can certainly take your energy, especially while adjusting to them. I’m glad to hear the prednisone made you feel really good. I have a real hard time with that drug. I know it’s still early and except for the tiredness, which hopefully will end soon, you seem to be handling it all well. Thank you for updating and I hope all goes well on your first check up. Please continue to update as much as you feel comfortable with! Thinking of you and wishing you the best with this trial and in general!
      April

  4. Hi April,
    So happy for you to hear more encouraging news!
    Keep it up. You’re in my thoughts, all the best.
    Richard Roehl

    • aprilals says:

      Hi Richard,
      Thank you very much. I hope the encouraging news continues as well, for me, and I hope to hear it from others. I feel I’ve won the largest lottery ever and I want to share! April

  5. Delia says:

    April thank you for sharing your story it has brought joy and tears at the same time. This is great news to my husband Tim who has ALS. We pray that all goes well for you in your next surgery. please keep us posted at all times,
    Grateful and Humble
    Frazee famly

    • aprilals says:

      Delia,
      You’re so welcome, it’s so helpful for me to tell my experiences. I really hope Tim is able to find something, stem cells, a medication, anything to bring relief. I don’t know how far along in progression he is but never give up. My next surgery is very minor in comparison to my last. It is surgery though and I will write about it. Thank you for your kind words. It means a lot.
      Both of you take care.
      April

  6. So glad to hear you’re doing well, April. Is your husband glad that you can snap your fingers? 🙂

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s