They say ALS/MND is a painless disease. Who is they? Im guessing “they” are individuals who don’t have ALS, or know anyone with it.
I have heard from pALS and know myself this couldn’t be further from the truth. There is pain and discomfort with ALS.
Even though I take supplements and medications to prevent cramps I get them almost nightly. I get them in my big toes, ankles, shins and calves. They aren’t as bad as they used to be, I’m guessing because my body is less responsive to nerve conducion. Small blessings I suppose.
I experience more than fasciculations, I get spasms throughout my body. My neck locks up along with my jaw.
I get spasms in my six pack, don’t laugh its there, just well padded.
My hands, elbows and shoulders will also lock up and I have to power through it. All of these spasms are painful and take my breath away. Strictures due to muscle atrophy and frozen joints will surely follow, thus the importance of physical therapy.
Now recently I’ve heard from pALS having issues with Trismus (lock jaw). Due to no longer speaking, chewing and eating. One more thing to look forward to, joy.
These adove, of course are the physical pains. The emotional, mental and spiritual pains are all together a different discussion. These can and often are the most painful effect of ALS.
ALS is a painless disease… my ass!