My family found out there was a genetic disease in our family on my mom's biological Dad's side. He left when my Mom was 13 and no one knew it was in the family. By the time they found out all of them had children, grandchildren, and a couple had great grandchildren. My mom is the youngest of 6, and 5 of them tested positive for the gene.
I told my mom I'd take care of her and I did until I couldn't anymore. She was getting to bad and I was taking care of my grandparents at the time too. I had to put her in a nursing home when she was 56. She's doing a lot better since they've gotten her meds stabilized. I used to go get her every other weekend because she can have 12 overnights in a 6 month period so it works out, but I haven't seen her since March. They locked down the nursing home to keep Covid out. They're one of the few nursing homes in my state that doesn't have Covid in it.
I tested positive for the same gene that causes the disease in 2012. I'm not active yet but I already know what's going to kill me barring some accident. 2 of my Uncle's have already died because of it.
Out of all the stuff I've been through in my life, and it's a lot, this is the saddest thing. There's no cure, there's newer hope for slowing progression that's come out recently. This disease kills your brain, it's the worst of Alzheimer's, Parkinson's, with some ALS thrown in, mixed in a blender, and slowed down to a progression that can last 20 years. There is so much more, that's just a way I can explain it to people who don't know it. It slowly takes away everything you are until you're gone.
I'm not afraid of dying. Quite frankly I'm not afraid of death at all and that might shock some people but I've danced with death my entire life, quite frankly I'm shocked I haven't died yet considering some of the stuff I've survived growing up. I don't want to die but when my time comes I'm going to embrace it. I'm afraid of losing myself over anything else. I've worked hard on myself and I know that one day I'm going to become someone that others won't recognize because of this disease.