ALS HACKS: FOR STARTERS
As I have Upper Motor Neuron Dominant ALS, I have only experienced loss of my voice and swallowing. Unfortunate, as I always say, because talking and eating are two things I love to do. While I can still talk, I’m hard to understand unless you’re looking and listening with intent. And I can eat most things but have to be careful. Still, I am thinking ahead, and preparing as well as I can for what my doc says is inevitable. Apparently, no matter how ALS starts, we all end up the same…with essentially everything that moves taken from us.
-My first recommendation is that upon discovering you have ALS, start learning and prepping. I think it will ease you into the discomfort of discovering you can’t use something when it occurs.
-If you haven’t banked your voice, especially if your voice is normal, bank that voice! Bank it now. Once it starts to change, you will have a very strange voice clone. It won’t be your voice. It’s some standard ALS voice we all recognize. We sound like we’re from the same country. I’ve lost my Texas accent. I met a woman raised to childhood in Lithuania. She had no Lithuanian accent. She sounded just like me. Even men and women start sounding alike. Bank that voice if it’s still normal.
-Get linked up with Bridging Voice and Eleven Labs. By the time I learned about them, my voice had changed significantly. A voice clone from my real voice was not an option.
If your voice has changed to the point that you can’t make a good Pro Voice Clone (because that’s what you’ll want and it’s free to pwALS) then start finding old recordings of your normal voice. You will need to eliminate all extraneous sounds and voices from those recordings, and Bridging Voice can help you with that. My situation was a little complicated, and I reached out to a friend who helped me separate my voice from all other sounds. I ended up with forty-five minutes of my voice, and Eleven Labs created a really nice Pro Voice Clone for me.
Start this process and any process, for that matter early. Don’t procrastinate. Procrastination is a real problem, and I can’t say I’m not susceptible to it. Being proactive, while so important, is also anxiety provoking, because you are in essence admitting that you’re going to suffer great loss. Admit it, there’s a side of you that hopes or prays that you’ll be different. It won’t happen to me. Maybe an effective treatment will be discovered. I pray for miracles. My doc assures me that I will get the full meal deal.
So, to those of you who can still talk. Bank that voice. Get that Pro Voice Clone.
-Then get your speech app set up and start playing around with it. Show off your cool Pro Voice Clone to your friends and family. They’ll think it’s so cool. And it’s something THEY don’t have.
Okay, maybe being a doc, and seeing patients in all sorts of terrible situations, has helped me to jump to the “I need to figure out how to extend my own butt wiping ability until I just can’t do it anymore,” conclusion.
-I call them “butt buddies,” but Amazon, keeping our gentle nature in mind, calls them Bottom Buddies. I often recommended them to patients with shoulder or back problems, for whom the reach was difficult. Morbidly obese patients were also grateful for the recommendation, as reaching is hard for them as well. For some of us, grasping the butt buddy may be just as difficult, but it could extend independent toileting for a spell. Though I have one, which I bought because I felt that if I was going to recommend it to patients, I should try it myself. My patients gladly tried it out, and reported that it worked!
-TOTO Washlets to the rescue. Get the one with all the gadgets, including self-drying.
Spell check wants to type “self-driving” instead of “self-drying.” And a self-driving washlet would be super cool, but not available yet.
-Get your shit together. If you have bowel issues, like irritable bowel, which cause loose stools and irregularity you currently put up with since you can take care of your own business, start to get more serious about figuring out how to control them. Ideally, you have one BM a day, and it’s a straight-shoot-one-wiper. That way, if you have a hired caretaker, for a while you can schedule them for the time of day you have your constitutional. And if your spouse, or someone you love is handling it for you, then you both only have to suffer once a day.
To that end, seek consultation with your gastroenterologist. Most of you only see them for the scheduling of your colonoscopy, and trust me when I say that’s really all they want to do. Scope your butt.
I used to laugh, because no matter what problem I went to see my gastroenterologist for, he always tried to schedule my butt scope, even if it was still 10 years off. What kind of med student decides to be a GI specialist anyway? I often ask myself that question.
However, most of them have other skills, and they can help you figure out how to hone down on the consistency and number of bowel movements, should you have those types of problems.
There are many products out there to help you. And remember, by the time you can’t take care of your own toileting, you could also be on a feeding tube, which enables you to further adjust your diet to diminish the amount of clean up involved. It won’t be like now, when you’re eating ice cream and every other delicious form of milk available to mankind cuz it’s so delicious and it all slides down (and eventually out) so easy.
Many think I’m obsessed with toileting. I got that from my grandmother, who had a stroke and lived with us for many years. She was obsessed with her “regularity.” She was from New York, and had a thick Bronx accent. She’d ask for some particular food item to, “Keep me reguelah.” I guess it rubbed off.
More hacks to come. I needed to get this one on the table.