Disparities between Our ALS

Living with ALS:

Disparities between pALS (Person with ALS)

If you only knew how many variations of ALS there are. Not types or distinct versions, but manifestations. From onset to the final moments. Yes there is a constellation of symptoms everyone shares. However each one person manifests their own spark of light, their own symptoms. If each were a distinct color there would be a spectrum so large that you can’t even imagine it. It’s maddening to see one pALS deteriorate aggressively yet others remain with a single physical deficiency for years, eventually though ALS progresses for everyone.

I personally know this all too well, having lost friends all too quickly as I progress at a modest pace. I am both grateful and deeply saddened by this. I have connected with pALS from around the globe who have been living with ALS/MND for many years. This lends credence to the randomness of this disease. Five years from diagnosis and possibly six and a half of symptoms I can:

Still stand & walk with assistance
Eat a normal diet
Speak
Breath without mechanical assistance
Have limited use of my hands (every post with one finger)
Act like a fool (per my wife)

Each one of us simply tries to hang on one more day, one more moment. In the end moments are all we have, all of us, ALS or not.

Enjoy every moment with your loved ones.

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