I’ve had it rough the past few days. In my last blog post I mentioned not resting before clinic day. I’ve been paying the price for that. To make it worse, Friday was the longest and most intense clinic day I’ve had so far. The great news is my breathing is holding up well. I don’t know if there is anything documented on this but I truly believe starting early with help breathing keeps you breathing better, and longer. It’s probably more of an individual thing, as no two people are exactly the same in progression but it can’t hurt. I recommend getting one as early as possible, when you first have measurable decline. I also think the trilogy 100 is the one to get without a doubt. You can go back a few posts and read my experience with it if you haven’t already. I’ve been using it approximately six hours a day give or take, depending on the day, during any given 24 hour period. No more morning headaches or waking to crackling lungs for me.
This ALS Clinic day was very taxing even if I had rested better the day before. There seemed to be a lot more patients there. Every other visit we are called right back and given a room. This time I was called back and after weighing and blood pressure, I was sent back out to wait about an hour. I’m not complaining really, I know clinic days can be overwhelming and you never know what it will be like when well over 100 people are being seen in different stages of progression. Some people take priority and this is one thing in life you don’t want to be given priority status for. I’d much rather wait.
My severe right leg atrophy, and the changes it’s caused in my walking was the most devastating part of the day. I’ve been hoping to be accepted in a clinical trial and you need to be able to walk. I was hoping I was wrong because this is a trial I meet all other criteria for and I want to be in. I haven’t walked for a while now. My left leg is still pretty strong and larger than my right bacause it still has much more muscle. Guess what? That’s right! to my own amazement, I walked. From the exam table to the door and back. Tony walked right beside me, I’m sure like everyone else, he was thinking he needed to be there to help when my right leg carried me on down to the floor. I did it unassisted. I did it!
So this puts me back in the running to be chosen. It’s still far from over. I’m still a very good candidate, but now my records must be reviewed by an independent neurologist. They don’t play or stray at all from the criteria set for clinical trials. That’s a good thing, even though it can be frustrating. If they did, the outcome results could be skewed. Even if I get the go ahead from the independent review, I’ll still have to go through more screening. So I’m far from being in, but I’m not out either.
If it does turn out that I don’t get in the trial, yes I will be disappointed but not defeated. I will search for another. I already know it’s highly unlikely I will personally be saved from the death sentence that is ALS. Even so, as long as I possibly can, I want to be a part of research to end this for others behind me. Do I wish something will help me? Of course, but I make it a point to stay grounded in the reality that it’s highly unlikely.
I think the main reason of all is it keeps my mind busy. I’m already busy with other things I’m focusing on, but I don’t want to give ALS the opportunity to get in my thoughts too often in a way that reminds me of all things I’ll now miss out on in life. Trust me it’s easy to be lead there by ALS. I want to play a part in ALS being stopped from ripping apart more lives and families. I want to stare my nemises straight in the eye while I deal with it’s destruction day to day. It keeps me living.
I do feel the extreme fatigue and accompanying symptoms like spasticity and cramping letting up. My range of motion exercises also were easier today. I’m loosening back up and ready to get back to my projects. Sorry ALS, you loose again!
ALS is a daily battle. It’s never a good idea for me to think I have the next day defeated. I wait and see what ALS has for me everyday and I decide how I’ll deal with it from there. I have learned to never get too cocky. ALS will fight harder then. I take it day by day and minute by minute. I can do that or sit back and take what it throws at me. Some minutes I don’t have much fight in me but I luckily have the support and encouragement to get back on track. I’m very thankful because I know many people don’t have that.
For now, tonight, I’m going to watch a movie with Tony and during that time put ALS in the background.
I plan, I said plan, to blog tomorrow. Not sure about what. Thank you all very much for reading.
Until next time, take care,
This article was written by April