| April Moundzouris
I finally got the news I’ve been waiting for. All the months of testing, waiting and hoping that I’ve been posting about has resulted in a date set for stem cell surgery at the end of October.
Surgery for the 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.
I’ll be having 4 million stem cells injected directly into my spinal cord, 10 injections on each side totalling 20 injections. I’m experiencing many emotions about it. First, I’m honored to have been chosen even though much of it was luck by being at the right stage of progression at the right time and living in the right place. I was still chosen, and I take it very serious. I know this trial is being watched very closely and being healthy as possible for surgery and recovery is important to show this is worthy to continue for more people, hopefully sooner. While there will be observations for improvement or slowing of progression, this is still considered a safety trial. Although I have already started eating healthier, I’m definitely kicking that up a notch and doing everything possible to be physically and emotionally prepared for this surgery.
It’s my feeling that participating in this study is not only for me but for everyone living with ALS and those who love them. This is huge for ALS and also for other neurodegenerative diseases such as Parkinson’s and Alzheimer’s. A lot will be learned. That’s why I want everyone to know how serious I’m taking this. I want and need to do well for the advancement of treatment for us all. In saying that, I also want to say I can’t predict what will happen in the big picture or when. From all the reading I can get my hands on about this and my personal thoughts, I think this is making much progress in understanding ALS and even if I get no measurable benefit from it, I still believe it’s a huge advancement of learning for researchers and will move treatments forward much faster.
After saying all this, I have to admit to having moments of fear. Thankfully, I’m able to express that and keep my mind in a good place. I’ve spent the last few months being tested to make sure I meet the strict criteria, and that’s where my thoughts have been. Now that the surgery is actually scheduled, that is where my complete focus is. There is no doubt huge risks are involved, including my lifelong fear of being instantly paralyzed from the neck down. While knowing these risks, I’m not in the least deterred. During the procedure I know I will be under the care of what I believe to be the most skilled hands and brilliant minds in ALS research and that care will continue throughout my recovery. This helps keep my fears at bay. Recovery will be far from a cake walk, but I am prepared to take it on.
I want to say to the ALS/MND community as a whole that you can count on me to do everything expected and recommended by the doctors treating me and I’m dedicated to being in the best condition for it. I know many would love to participate in this study. Since it’s so limited at this time, I hope that will bring some comfort to know I’m not just glad to be a participant, I am dedicated and preparing for it. I know that would make me feel better.
Let’s keep hope alive that this and other studies going on will give us a treatment soon. For us as well as people living with other neurodegenerative diseases. Hope is alive and well in me for future treatment.
I have been nervous about this blog post since I received the news. After writing it, I feel better and believe I will have the support of the ALS/MND community behind me. I still have a life to live until surgery and for the most part my life will continue as normal. There are plans to be made for pets and family coming from long distance. Other than that, I’ll be listening to my music, watching movies, loving my pets and being me as each day passes.
Thank you very much for taking the time to read my blog.
Until next time, take care.
This blog was posted orginally on Oct. 7, 2013.
About the Author
My name is April Moundzouris, and I was diagnosed with ALS on March 28, 2012, when I was 39 years old. I recently started a website, The ALS Express, which contains easy-to-find information for those recently diagnosed with ALS. The site also houses my personal blog (also posted as April's ALS Blog at WordPress). My site is very straightforward regarding my life with ALS and may offend some. However, that's not my intention. If I can help one person newly diagnosed with this horrible disease better understand how to adapt to their ever-changing condition, then I have a feeling of accomplishment. If you get a chance, please visit my site. Please also visit The ALS Express on Facebook, a fan page that my husband set up and maintains.
Lastly, thanks to everyone helping to spread awareness about ALS. A cure or at least a treatment is way past due.