Friday is the day my wash-out from the Tirasemtiv clinical trial is over. I really did enjoy those fog-free days. I felt less woozy and tired, but on the downside, my muscles felt more fatigued. I am very interested to get back on the drug and see if my muscles have a bit of a comeback. I missed them. I don’t enjoy the muscle weakness. The other day I tried to lift a half-gallon of milk to make my oatmeal moister, and I could not do it.
There are so many annoying things brought on by ALS. My speech is pretty bad. I can’t lift my legs onto the wheelchair footrests without some sort of assistance. I can’t reach behind to scratch my back or pull up my pants without my arm cramping. I can, however, still type. So you will still be annoyed by my rants. Lucky you!
I had a date today with my aide. We went to brunch to celebrate my 60th birthday on Monday. I never imagined celebrating 60 in a wheelchair, but it is what it is. If there were sidewalks here, I’d be out more. It will be interesting to see what happens in the winter. When I took the trip to Boston, I started shivering the second I got off the plane. Seems that 60 degrees is too cold. Heat does not bother me though, or at least it doesn’t bother me now.
ALS constantly requires you to adapt. You may enjoy reading this article about technology’s effect on healthcare. The author had the same idea I did regarding her Amazon Alexa. I even changed the name just as she did.
Remember to support ALS research!