165 days really seems like a big number. 764 seems even bigger. It’s been so long since this all started that you just become a bit numb to it. I spend 75% of my day forgetting something is wrong with me, 20% of the time thinking about if it will ever be better, and a 5% mix of anger/sadness/worry/etc. My pet peeve in life has become the simple daily question of “how are you doing?”. The question is relentless and I really don’t have the answer. Don’t get me wrong in the fact that I am blessed to be slowly progressing but I honestly have no idea how I’m doing anymore or how I am progressing. On paper, I’m the same person I was in February but in life it’s an inconsistent mess.
Some days I find myself in full stride and fine. Most days it feels like an adventure to walk 25ft. I know I wasn’t there a year ago but it’s so hard to pinpoint when it just went to crap. I feel like I’m on this bubble of being converted to a chair and some days I just feel like giving in. I don’t want to but it looms over me like a dark cloud. I’ve been so lax in my activity that I wonder if I’m just making it worse. My goal is to try and work on that right now and take steps to get more exercise. The atrophy is my right leg is severe and my right leg just doesn’t want to compensate anymore. Heck I wonder if I would be happier with a set of wheels and just accepting the future. How do you shut the door on walking when some days you don’t even need a cane?
The irony of it all is after 20 years of abusing my lungs they are the one consistent thing holding on. Still ranging between 113% and 117% on my FVC tests and still blowing all the other breathing tests out of the water. Still no substantial bulbar issues either. So, I can talk, I can breathe, and I can still work my arms although a bit weaker now. Heck even my grip strength is at the top of my age range. It’s just so hard to go from going on an elliptical full bore for an hour 2 years ago to finding 20ft to be a daunting task.
The other thing on my mind right now is the trial I’m in. Obviously its double blind and I have no idea if I’m getting the drug or not. Most likely never will unless I go open label at some point. I spend 15 hours a month sitting in a clinic getting IV’s with this great drug and have no idea if I’m getting it. No idea if I’m spending 7 months wasted on extending life. Heck we just went “right to try” and I could basically have my choice of drugs to try. Not trying to be overdramatic but it keeps me awake at night. Sometimes I feel like I move a bit better and hope it’s the drug improving my situation. Then I wonder if I could move my leg more if I did more PT.
Overall, I’m a head case. The other hot topic in my mind right now is work. Anyone who knows me knows I was a workaholic for years. I wanted to work hard, play hard, and retire early. All meaningless things to be honest. Work means very little in life to be honest and I’ve accepted the fact that I take it too personally. With that said it makes me immune to my disease. When I’m work it doesn’t matter that I walk like a duck or that I twitch. None of it matters and my mind can still work. It’s almost therapeutic to forget what’s actually happening for 8 hours at a time. Heck now with “right to try” I need to work. I need to have that extra income for drugs that simply would be out of reach on disability. The flipside is I take it all too personally. It upsets me half the time and I stress myself out. It’s nothing new but stress is a bad thing in my state. It’s probably killing me faster to be frank. So, what do you do? Do you quit and live your life bored out of your skull on a back porch smoking cigars and drinking gin and tonics? Do I quit and focus on my health with PT and healthy eating? Heck do I go full blown hippie and do yoga for 2 hours a day or fish all day long? Those decisions aren’t easy and every day is a day that has passed. How many do I really have? Am I going to look back in 6 months and ask why I did it? Am I going to look back in 6 months when I can afford drugs and thank myself? I don’t think there’s an answer and those are the hardest questions to ponder.
So, to flip from my emotional babblings to real eventful things “right to try” passed in the senate. Yes, the thing I’ve mentioned 8 times already and am actually pumped about. I cannot try and wait 5 years for an SOD1 ASO to clear phase 3, I cannot try and wait for a cocktail of meds, and I cannot just cruise the web for a new trial. It’s all there and all accessible shortly (pending the companies allowing it). I still hope that these companies offer some assistance beyond “cost” for patients. If I hear one more drug costs 150k a year I’m going to puke. I love the thought of being a human Guinea pig to stay alive but I have to drop 300k a year to try 2? We just hate dying people in America!
For the most part I think the entire act is great. I think it’s going to hurt trial participation but I guess if they keep the costs high enough people will be forced into them. I don’t dislike the trial process as a whole but for ALS it’s a crock of crap. The limitations are garbage and most trials are for patients under 2 years since onset. It takes a doctor 2 year to blow his nose in the US if you aren’t seeing a top specialist. It took me forever to be diagnosed and in fact for the first year+ I was told there was zero chance I had ALS. So, you expect to get a truckload of folks with those parameters……………pshhhh.
Anyways I’m jacked about that which is offsetting the bad. Hope is awesome you just have to have enough to get through the crap moments of the day!