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.