It’s been a while. I just have to write when the need comes and I feel the need right now. I ask you please bear with me for any mistakes as my thinking can be a little foggy right now. It’s likely I’ll make a mistake, but no harm, right? If you can’t figure it out just get with me.
I feel a little out of the loop on some things since I haven’t spent much time online lately while I’m still recovering from surgery. I am elated to see how the ALS Ice Bucket Challenge has raised money and awareness. Several people have poured ice water on themselves and donated in my name. Thanks to all participating in this!
I want to share my last Emory, nine-month, post-operative results. Again great news! I’m holding steady. I did hope and believe my breathing score would be a little higher, but it’s still at pre-surgery baseline and I was steadily declining. Even though I do have mild slurring, my voice is still stronger than pre-surgery. I still feel that my right wrist is slowly going back down, but I’m still above pre-surgery, so I’m not complaining. Both legs are still a bit stronger even though my right is pretty weak. I’m still not walking any real distance with my walker and having lots of joint pain and a feeling of broken bones in my feet when I do.
I’m so thankful for my strong left leg that keeps me more independent by being able to transfer. I don’t think I’ve mentioned before that I’ve been having trouble sitting up in bed for any length of time. Before I know it I’m all the way on my back. My left leg really serves me here. I park my power chair close and midway up the bed. I brace myself with my foot on it and push myself back up. I have a body pillow to put in front of my sit bones and I can pretty much keep myself up on my own. Sometimes I get in a situation and can use a little help from my husband. The things that cause me the most problems are my weak core muscles and my rear deltoid muscles. These are what cause me to slide down and have such a hard time getting back up with my arms. So thankful for that left leg and the improved and prolonged strength the procedure gave me.
There is no doubt in my mind I’ve been given better and longer quality of life because of being in this trial. I’m so thankful! I’m also thrilled to learn there will be a phase 2b trial coming right on the heels of this. I can’t wait for the official report for this trial and really excited about the next with more than twice the patients to have the opportunity to benefit and prove the efficacy of what I now refer to, from my experience, an actual treatment for ALS. There will be hurdles to overcome with it being an invasive surgery instead of a pill. It can be done. I thank the phase 1 participants for being willing to take this first ever risk. With some of the fear of the unknown taken away, I’ll forever be grateful to be in phase 2.
I also want to share something from a long distance friend of mine, Tony Bray. A few years ago he decided he wanted to do something for his own health. He chose swimming the Solent on the Isle of Wight. He also wanted to do it for charity. He has a close friend who I also know online and consider a friend starting because we have something in common, MND/ALS. After considering a few charities, it soon became a no brainer for Tony to make this swim for his good friend and to bring awareness and raise money for this often very misunderstood terminal illness, MND/ALS. He started training which is no simple feat. The Solent can have strong currents and it’s a major shipping route for passengers, freight and military vessels.
The early years of this annual event has helped Tony live a healthier life and every year his team has grown. It is now officially the Ian Pratt MND Challenge. At least 21 swimmers took the challenge this year and I expect it to continually grow. This year, he and the other swimmers as well as the great safety crew wore awareness bracelets in honor of those who are no longer with us, MND Angels, and for us still here fighting this battle, MND Warriors. Tony wore my bracelet all the way across. He told me he used the bracelets on his arm and thought of us as inspiration during the hard times. I’m by far a sappy person, but this means a lot to me. We’ve all had our bracelets worn during the swim and our swimming the Solent accompanying certificate mailed to us. I’ll always keep and cherish mine. A huge thank you to Tony, the other swimmers, kayakers and all support crew for taking on this challenge to raise money and awareness for all of us. This goes way beyond the Isle of Wight and on to a global event. Thank you all!
I’ve been slacking a bit on my range of motion exercises. ALS never takes a break and we can’t either. I’m off and on to them now.
Until next time, take care.
The blog was posted originally on Aug. 25, 2014.
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.