THE THINGS THEY DON'T TELL YOU ABOUT ALS
They fail to tell you that the 2-5 year survival rate starts when the first symptoms do...
That you will be misdiagnosed a dozen times and left wondering why the hell you have a drop foot
and no doctor seems to know why or are too busy to care...
But they will operate on your spine just because and tell you that it will help but it really won’t.
No one tells you that it takes months to get in to see the neurologist and that the wait list they put your name on is a mile long.
You wonder why you keep falling and why your knee gives out but you don’t worry because that surgery that you had on your back was going to start working.
Until you realize that you can’t walk very well anymore and you start using a cane then a walker but pretty soon that doesn’t help either.
So you check into getting a scooter. They don’t mention that a strange look will pass between the physical therapist and the scooter representative. You get the chills and shrug off the feeling of foreboding. You’re sure it will be fine. But better wait for a diagnosis they say. Just in case you need more bells and whistles. You might need help holding your head straight. You might need a wheelchair not a scooter.
They don’t tell you that the neurologist is going to be vague and He will mention several reasons for your drop foot. Your weakening leg. Your inability to walk. He recommends testing. And more testing. That finds nothing. Nothing but the weakness. They don’t tell you that look in his eyes is pity. For what lies ahead.
You mention that you might have ALS to your regular doctor. Who is HORRIFIED. Who tells you that if you have ALS, you’d be better off getting pneumonia. COVID.
Then you panic. What in God’s name is ALS exactly?!? The neurologist mentions final testing-Bloodwork. A spinal tap. Stanford. Maybe I will get lucky and have cancer instead? Say what?!?!
Getting cancer is preferable to ALS?!? He doesn’t want to look you in the eyes.
Meanwhile- you can’t get up from a seated position anymore. Everything is so much harder.
You notice that you’ve lost a lot of weight. Not good weight. Muscle weight.
They never told you that your hair would thin out. They never explained how you are supposed to shower. Use the toilet.
They didn’t mention that your appetite dies along with your sense of taste. That you will choke on water. That nothing tastes good.
It hits you one day that you are never going to walk again. Never going to run with your grandkids on the beach. Never take the family trip to Disneyland. Or Beaver. Or Eureka. Or even TJ Maxx.
They don’t tell you that breathing is going to hurt. That you will gasp for air. That your cute bedroom will start to look like a hospital room. That garden tub you were so excited about? Nope. Not going to happen. Not now. Not ever.

They don’t tell you that you won’t be able to ride in your own car because getting in and out takes too much energy.
They didn’t tell you that ALS HURTS. Badly.
They do tell you that you will need all the features and functions on your wheelchair. You won’t feel reassured.
They don’t tell you that there will be excruciating pressure on your tail bone. That you won’t be able to get comfortable. That everything will hurt. All the time.

They don’t mention the indignities and the suffering.
Or the fact that nurses and doctors are clueless when it comes down to ALS.
That the hospital won’t know what to do with you. Or what to say. Your good doctor tells you that a nice long starvation is better than getting a feeding tube.

Another thing that they won’t tell you is that you will become severely dehydrated. Malnourished. That you will get heart failure from the stress. A blood clot in your heart from inactivity.
That feeding tube that you wanted won’t happen.

Your heart will be too weak. It will cause fluid to fill your lungs. They don’t tell you that morphine and Ativan will barely keep you comfortable. That the hospital will send you home with a NG tube down your nose to feed you. That it will clog. Be removed. And then. That’s it. You will just slowly fade, gasp a final time, and you’re gone. And those left behind are heartbroken.