Degenerative neurological disorder

I will be straight and thankful that als was ruled out by my neurologist at Cleveland clinic... That being said she believes I have stiff person syndrome which is 1/1,000,000 dx so I am alone as my body fails and I slowly lose ability to move, breathe and function.... Sadly with great pain. I am being transferred to the CC movement disorder clinic but really no good place to find others suffering how I do. I am mostly following to learn some adaptive equipment and other options that may help.  I'm waiting to see gi dr for esophageal spasms and trouble swallowing.(feeding tube time) pulmonology referral to help me find ways to breathe.. I fall frequently and loose the ability to straighten body parts. The muscles in my chest and diaphragm tighten to where I struggle to breathe. Just trying to not feel alone.