Oh Snap!

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