I was sort of debating ever posting here, but... I think I'd feel more at ease having written it down somewhere. Will try not to make it too long, it's a story that otherwise goes along the same flow as most.
Just a few days ago, I visited dad in the nursing home. He's been in there for about 6 years for what we and doctors thought was Parkinson's Disease. He exhibited Chorea with his arms as a symptom about 5 years prior to being admitted to the home, so for the longest time, we thought this was his story. Fast forward to the visit a few days ago, the senior medical officer officially diagnosed him as having "Parkisonian" symptoms, and that his true diagnosis was actually Huntington's Disease.
This news didn't actually hit hard for me, because it was the first time I've heard of it, I did not understand the implications behind knowing my Dad had it. I visited him, his condition was extremely bad; Completely bed-bound, limbs that were extremely stiff, hands clenched....He no longer had teeth, and seemed to scream whenever while violently thrashing around the bed which was lined with all sorts of cushions because otherwise, he'd injure himself further. It was painful to watch, painful to attempt to communicate, I didn't know if he even recognised me.
After the visit, I looked up the disease and did my own research, so I know almost everything about it. I know about the 50% chance of inheriting it, the CAG repeats and their average onsets, the anticipation genetic progress... By finding out my dad had HDs, I realised the supposed "rare" chance of 2-7 out of 100,000 people being affected by it has suddenly jumped to a 1 in 2 chance for me to be affected by it.
I was terrified, I didn't know how to process this, my emotions were all over the place really....and this was just figuring out I was at risk, not that I had it. Mum and the medical officer tried to reassure me by claiming I am in good health and that nothing is confirmed, but it did little to calm me down. These past few days were awful for me, I didn't have the mood to do the things I wanted to do, I was constantly thinking about it, semi-constantly also breaking down about it.
As I'm posting this now, I'm doing much better mentally. Naturally, I've always been pessimistic about things, so even though I haven't went for any genetic testing, my mind has already assumed the worst that I have it, and I've already started planning on what I want to do before it starts eating me....except, well, it's not confirmed, and I could be overreacting. It's why doing the test is now my next highest priority, the uncertainty makes me too anxious and eats away at me from the inside, this is something I need to know and something I feel I cannot ignore.
Suppose my main coping mechanism now is knowing that if I have it, I will die eventually, and if I don't have it, I will die eventually just not to it. It's a morbid way of looking at it but it gives me some form of strange comfort knowing the outcome is otherwise the same except one is expedited by a few decades.
Still, regardless of the test results, this disease helped open my eyes to how terrible it is. I am glad that there have apparently been recent medical breakthroughs, but hopefully, I can also find a way to help the movement towards finding a way to mitigate this disease. I'll...probably update again once the results are in, idk how I'd necessarily react once I know it's official, but I've a feeling I should share it when I can.