Stage 1 -> Stage 2 Huntington's Disease while playing FPS and TPS games
I inherited the disease from my mother and was diagnosed at 23 with Early Onset Adult HD though I showed symptoms as early as childhood related to discoordination, spatial unawareness, chronic illness, and mental health issues from 10 into my late 20s. I am 33 now and more reliant on my wheelchair and mobility aids, have "tremulousnous" that even affects me in my sleep. I have mild chorea (jerking) primarily in my legs but sometimes in my wrists and hands.
I have always loved to play video games, I played competitive shooters since I was in middle school and still play The Finals, Valorant, and Fortnite Zero Build. I use Aimlabs and Kovaaks to help with tracking, reaction time etc, but I've learned I have to play more defensive and strategic rather than aggro. While I manage and still get victory royales with my duo, 1v4 clutches occasionally etc I reailze I have certain limitations (which is okay) so I play with players who fill in the gaps of my abilities usually.
7 years ago i started having issues with my gait to the point i ended up with tarsal tunnel and plantar fasciitis in both my feet resulting in double foot and ankle surgery. Was not fun and now the same issues are affecting my wrists, hands, and ulnar nerve. I was dx'd with ulnar nerve entrapment, de Quervain's, and reoccuring RSI / bouts of tendonitis etc and am now supposed to wear a rigid brace on my right hand all the time for the next 2 weeks and my left wrist is supposed to be in a rigid brace only at night. I also am supposed to wear an elbow brace on my right elbow and do heat and cold therapy etc. I've been in physical therapy for several years now and am in occupational therapy now too.. the specialist said that if nothing changes or things get worse in the next 2 weeks then they'll have to do surgery. They don't want to put me in the situation they did with my ankles/feet so they're supposedly going to only do one arm / wrist at one time and wait til it heals but.. it's very frustrating. I have nearly no usage of my hands right now and am henpecking like my grandmother to write this 😂
I'm sitting here in my wheelchair with bricks for arms and realizing that I won't be able to keep this up forever.. no matter how much I love gaming... It is really disheartening.
Unfortunately one thing that has also sped everything up with my tendon and ligament issues is that HD is speeding up my metabolism and causing my muscles to eat themselves.. I can't keep up with my caloric needs properly even with a dietician. I dropped 150ish lbs in a manner of a few years and now am losing 5-10 lbs per month if I am not able to meet my increased needs for a higher calorie diet. Having dysphagia and partial paralysis of my face muscles does not help me with that at all 😔
I guess I just needed to vent. The worst thing about the disease is losing every part of you, losing the ability to do anything. But there's no cure or treatments so 🤷♂️
I don't even know why I'm still here sometimes or why the disease has to go on so long but it just seems more and more pointless as I continue to lose my ability to do things.
I'm not saying that I don't want to live, it just seems more and more pointless to be here just waiting.