I created this community so that everyone who is affected by neurodegenerative diseases like Alzheimer’s Disease, Parkinson’s Disease, ALS or muscular dystrophy --or of any kind-- can gather in one place and support each other. I know it’s a long name but how do you shorten it and catch all those who could use it?
I was born into a family with Huntington’s Disease and I tested positive for the gene in 2018. I cared for my mother at home as she struggled with it for three years until her symptoms were too far advanced for home care. I continue to watch her decline from afar in a local nursing home that has a Neurocare Unit these days as I prepare for the end stages of her disease to take hold. I try to tell myself that I can do some pre-grieving, pre-preparing, for such a thing- but I don’t honestly know if I am really doing myself any good or just doubling my grieving time.
I am technically pre-symptomatic physically and monitored by multiple doctors for changes. I have hope for my future health sometimes when I read about new trials or drugs coming out. I’m just racing the clock on that I guess. I have an advantage my mother and her mother and previous generations did not have, which is genetic testing in time to face it head on and treat symptoms immediately.
I will link some info about Huntington’s Disease https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/https://hdsa.org/what-is-hd/overview-of-huntingtons-disease/. It’s not pretty because I haven’t figured out how to do thar on Lemmy yet but I’ll get there.
When you introduce yourself you should feel free to do the same. We can all learn from each other here.
Thanks, I’ve been hoping for a sub like this to migrate. My father has Alzheimer’s and I found r/dementia helpful
I’m so glad you found it helpful. I hope we can gather a group of supportive people together.
Thank you so much for the info, OP, both on your own situation and a starting point place to read up—a big internet hug to you. May the Powers That Be delay onset for you until a complete cure is found.
On caring for your mom, yes “anticipatory grieving” is a thing. I know that from literature and experience with my partner, and from doing in-home hospice for my father just before the pandemic. I don’t think we get a choice about doing or not doing anticipatory grieving; emotions don’t obey logical commands (and lord knows I’ve tried!)
My therapist says it’s healthy for me to face this now, especially given the fact that I also have the disease. I have to sort of layer the fears of her death and mine and just face them as they come and then let them wash away so I can try to live a happy life too.
I do a lot of meditating and pondering and journaling so I won’t just stuff it down.