Here is a list of the pills and vitamins — aka Daddy’s Little Helpers — that I take two times a day (unless otherwise indicated).
- Baclofen – This is a muscle relaxer. I’ve upped my dosage from 20mg to 60mg and it has made all the difference. No more spasticity in my legs and arms.
- Rilutek – The only FDA-approved ALS drug on the market. Benefits are not well-known but it doesn’t hurt to try. Plus , if you let it dissolve in your mouth you get that numb-tongue feeling (reminiscent of that Clapton song from the seventies).
- Avanir – My clinical trial drug. I can with absolute certainty attest that these pills control my fits of uncontrollable laughing and crying. I could not and would not want to live without it.
- Omega Fish Oil, Vitamin B-12, CO-Q10, Florasmart – This is it for my vitamin regimen. Way less than the volume of horse pills Dr. Sarah had me on .
- Fiber Gummies – I have gone from pooping twice a week to nearly once per day. Enough said on that subject.
- Ensure – I am still not used to burping after having one of these poured down my feeding tube. Up to two cans a day.
And then there are the occasional trips to the movies with Bubba K., Mamoo, and Pinner.
Typed with love by Michele W.
Hi Jason!
I have it on good authority (former ALS patient!) that a little bit of Hershey’s chocolate, strawberry or caramel syrup, goes a long way toward making the Ensure burps a little more pleasant. When he was living dangerously, Bill had me mix the chocolate and caramel syrups!! Hope this helps!
Thank you, as always, for for sharing your journey.