We can make it!

PLS Group and my story

There are no definitive test for PLS, so they test for everything.

Then began a long wait to make sure it was not ALS. Three years or four years depending on the doctor. There is no test and no cure for either one. So, I went in every three months so they could tell the progression. During this time I became active in the Spastic Paraplegia Foundation hoping it was PLS. I met Jerry and Louise who attended a support group and they invited us to meet with them and then to a meeting. It was in my third year that the doctors concluded it was likely PLS.

Skipping forward to 2026, it is a hard road to hoe. Many people have many more troubles than I. I really am lucky I suppose. I find my good friends are still my good friends and the whole PLS support group is lovely. It is not at all a poor me group, however there are many people in the group that can be open and not be judged. And believe there is a lot of judgement by others you meet daily. From walking with a walker or wheelchair, both manual and power. Then when you meet people the first thing they notice is my voice. It is hard to understand, but good listeners can pick enough up that they can make out the gist of it.

I often think that people with ALS consider “us” lucky, but don’t fool yourself. It is years of frustration, hardship on friend and family. Yes, it is not a death sentence, but it makes for a lifetime of struggles. It is expensive also. Doctors visits, PT, SLP and OT visits. Falling has five times taken me the the emergency department. On vacations even. Banged up heads, legs, butt, chipped teeth and bruises everywhere, plus two broken hands. When it happens, you quickly think, “ oh, I have added to my wife’s duties, taken time away from her" and the list goes on. Sure it hurts and will for days or weeks, but your concern is not for yourself at that moment.

Travel becomes harder as the need for something powered increases, it becomes very expensive. Try taking a power wheelchair on a plane, renting a van or other vehicle to carry it in. You find the option hard or impossible.

Just a small donation will go a long way to helping me meet my goal for Spastic Paraplegia Foundation, Inc