I've been dx'd with the dreaded rare Huntington's Disease (Finally)

I only say finally because its something I desperately wanted to know if I had it or not. I think its better knowing that I have this incurable non treatable disease in case something becomes available and I didn't know that I had it to be able to find possible treatment. My mom was dx'd in her 40's from a dr that just didn't get it, told her in about 5-10 yrs she'd be dead, but the progression is a slow diginerative disease. One can live up to 20 yrs, my dr at the Johns Hopkins had told me. Not too many people have heard of it, myself included and had to go through some learning about it before getting tested, thats so they can see if your the right candidate too since some do commit suicide at learning the news. Its so rare only 1 in 10,000 of european decent have it. So I see why not too many have heard about it. That being said its even harder finding a another like me for moral support, I do go to therapy, but sometimes I just need to ask another with HD how lifes coming along, yeah I could talk to my mom (she lives in co) were not close and never talk unless I fly out. Its so scary to see her progression, falling down stairs, chorea (involuntary body movements) slow when responding to questions, cant swallow very well. And it will get sooo much worse so I will see her dying and myself too because I have it too. She may become a shell of a body unable to move at all, speak, look at you or anything but mumbmle sounds, feeding tubes will be used and will need a home. I just hope to hell that something comes along before that's me, I will do anything not to go that way. It's just so so very sad. Thanks for just even reading this rant!