Posts Tagged ‘Spinal cord’

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 4,000,000 stem cells injection 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 disease. 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,

April

What a day yesterday was!

This has been the hardest blog post for me get going with. I’m just going to start right off with why. I am officially in the ALS phase II stem cell study at Emory. Even though I’m officially in the study, Dr. Glass made very sure I am aware that between now and the surgery date, which has yet to be set, I must continue to meet all of the very strict criteria, I can still be dismissed from the trial as late as the day of surgery. I was also reminded and made very aware of how dangerous this can be. Messing in any way with the spinal cord is in no way to be taken lightly.

I’ve never felt quite like this in my life. I feel frightened and elated at the same time. I also feel a strange sense of guilt. I know many people want to be in this trial. I try to remind myself I didn’t win a trip to the moon. I was given an opportunity to help move research along at great risk to my health and even possibly my life. Knowing so many others would gladly do the same is still what gets me. It’s still the day after and I am still coming back into myself.

I am going to stay focused  on keeping myself in the best health I can be. I will take care of my body, follow every order or even suggestion given to me by Dr. Glass and the study team regarding this. If not I don’t think I would be deserving of it. I’m doing this for all of us and for all who have lost their lives to ALS. I’m taking this very serious.

Please don’t get me wrong. I’m not trying to come off as I’m not harboring a small light of hope that I will get some sort of benefit from this particular surgery. I wouldn’t dare insult your intelligence in that way. However, this is still a safety trial. I am taking a huge risk.

Anyone who really knows me can tell you through my life I’ve always said my biggest fear is to be paralyzed. So being diagnosed with ALS was like my worst nightmare coming true slowly. I’ve tried finding comfort in knowing it doesn’t affect sensory, but as we all know, that is a double-edged sword.

I will be taking care of myself but I’m still going to be myself. I still have other things I will continue focusing on. All this will continue as usual. To be honest I’m telling this to myself just as much as you, my readers, right now. I also know it’s true. I’ll continue blogging, preparing the “show” I’ve been working on for my family, my documentary and every other project I have going on. It’s been keeping me going since my diagnosis.

Yes, with it being so new, I’m adjusting. I know me and within a couple of days this will be something else I’m participating in for the purpose of ALS. More in the forefront of my thoughts at times because of all that comes with it, but another study nonetheless. There is nothing any of us do that is too small for this war we’re in with ALS. Everything counts.

I will keep you up on my feelings but I won’t be blogging specifics of the study after surgery. I’m not the only person in it, I’m not in charge or aware of exact outcomes so therefore It’s not my place to share what I don’t know. My blog is still about me and how I’m dealing with ALS, that’s what I’ll continue to share with you.

As I said, I’m still taking this all in. I hope I’ve explained myself well about how I’m feeling right now. I’m not a professional writer. I do love to write and I’ve found a great outlet in blogging.

I also said I’m still me, this is another day in my life. I’m about ready to have dinner with Tony. I’ll watch my favorite show, Big Brother, then I’ll surely have to rock out to some Rolling Stones!

please visit my website: http://thealsexpress.com

Until next time, take care,

April