I have several posts in mind I want to do, but I want to do them right. I want to have the facts straight. The last thing the ALS community needs is more false information floating around. I have no planned post today so I’m just going to let my inner-thoughts flow. Everybody has good days and bad days. With ALS there are still good and bad days, but there is also what I call minute days. These days are usually busy and a lot going on, like a doctor’s appointment, I want to shave, I need my nails clipped, and just too many unexpected things happening. Things like I can’t reach the top shelf of my closet now, so I have to wait 3 minutes for Tony to get off of the phone, and during that 3 minutes I try to scoot with my weakening left leg to get something else accomplished only to realize I can’t reach the the shelf where I keep my face wash. Then all I can think of is all the things I can’t do. Tony stepped away from me with everything seeming just fine, then comes back in 3 minutes to me in a panic.
Today has been a real minute day. I’ve had minutes of feeling so much love from family. I’ve laughed. I’ve looked forward to things coming up with excitement and enthusiasm. I’ve felt scared as hell. Desperate for things to get accomplished so I can do things I want to do before I lose the ability. ALS changes everything, and I mean everything. ALS is horrible, I don’t think anyone would dispute that. It does have characteristics of other terminal conditions, but something unique to ALS is that there is absolutely nothing to offer, no proven statistical percentage of a chance for a cure. I know there are clinical trials aiming for hope, but they’re just that, a trial. Every person with ALS that’s participating in trials is clearly told, “This is not meant to help you in any way.” That goes for any trial for anything, and you understand they have to say that. We already know.
There is no, “We can try this treatment, but there’s only a 50 percent chance it will save your life. It’s hard to go through so it’s up to you if you want to go for this or choose to live your shortened life as you want to.” Obviously this isn’t an actual quoted statement, and obviously cancer comes to mind reading it. It’s also obvious that would be devastating to hear. I’ve lost family to cancer and seen it up close. It’s devastating for the patient and the family. I want to make that clear. This is in no way a, cancer is nothing compared ALS, post.
My point is I don’t know of any disease, other than ALS, that you are given absolutely no offer at all for for a possible cure. Now you’ll hear people, including myself, making statements like, I won’t go down without a fight, ALS hasn’t met the likes of me, and other similar statements. But we haven’t had an ALS specialist tell us, “We can offer you this to possibly save your life, it has saved others.” Unless they’re seeing a snake oil salesman. The only FDA approved drug for ALS is Riluzole. It’s about as far from a cure as you can get. It offers up “possibly” a few extra months of life. Life that is, by the time you’re at those last few months, hardly a life you can live on your own terms.
The FDA can help by allowing ALS patients to take higher risks in clinical trials, and by letting us move through trial phases faster. We’re waiting on them. I hope to get the news they’ve made that decision soon. Please!
To add to the fact that we know there is no cure, we are also always aware that we’re getting worse. The average life span given is 2 to 5 years. It’s not like we can say, “Well I’m going to spend two to five years skiing, jumping out of planes, driving across the country, do a little globe trotting, then hit up vegas before checking out.” If you are lucky enough to be diagnosed early in progression, you best get what you want to do out of the way fast because you have a lot of planning to do. You are, in different orders, going to need a very expensive power wheelchair, a wheelchair van, a wheelchair accessible home. You’ll need to have somebody dress you, feed you , give you a shower, wipe your ass, pick your nose, I could go on but I think that’s enough.
You have decisions to make about the options of extending your life. You can’t eat anymore? Well you’ll starve to death, or you can have a feeding tube placed for nourishment. You can’t breath on your own anymore? Even with that non-invasive mask you wear 24/7? Well, you can have a tracheostomy. That can really prolong your life for a very long time if everything goes well. Great! Don’t forget, that will just keep air flowing, but you will need very expensive care 24/7. Also don’t forget, these things may prolong life, but they don’t stop progression of the disease.
You will with no doubt reach the point of total paralysis except your eyes, but great news! You can still use your eye gaze speech device to enjoy conversations and let someone know if you’re uncomfortable or need that little spot on your ankle scratched. It turns out it’s not as uncommon as once thought to lose the ability to move your eyes too if kept alive long enough. That is called a complete locked in state. You are completely aware of everything around you, but have no way of expressing a thing, nothing. So you will want to be sure and let it be known way ahead of time what you want before that happens.
This was a roll out of my inner thoughts in real time. We all have our minutes, ALS or not. Priorities and perspectives just change after ALS or any dramatic, life altering change. I’m still fighting like so many others!
Until next time, take care
This article was written by April