I have a hereditary terminal progressive neurological disease, called Huntington’s Disease. I have lost already and am currently losing many of my family members from this cruelest of diseases, whilst dying from it myself.
There is a 50% chance of children inheriting it from their affected parent. I am at the moderate stage and careering headfirst into the final stage where I will be unable to move, think, walk, speak or eat, and need 24 hour nursing care. It’s symptoms are a combination of many other neurological diseases, such as ALS/MND, MS, Parkinson’s Disease, Schizophrenia, and Alzheimer’s Disease ALL at once.
My eldest brother is at end of life in a nursing home and the last time I got to visit him a few years ago he was suicidal but too weak and far gone to do anything successfully himself, so was begging me to on visits. When I hugged his tiny skeletal frame it killed me inside. I wish I could help or get help to end his suffering, and to have assisted dying for myself before getting to that stage and further hurting my DD & partner. Mostly in the absence of any real treatments or cure, I wish they would hurry up and put this option in place for her, so I can die in more relative peace knowing she has that option too if our worst fears are realised and she also has it.
I cannot put into the words the heartbreak that this causes everyone who has it, and all those closest them. It has been ripping through families for many generations in millions of families around the world. I have a DD who is it at 50% risk. The toss of a coin that happened the moment she was conceived, and she either has the affected bad gene or she has a healthy one. She came into this world before my own parent was diagnosed or showing physical signs, and their had been misdiagnosis further up in the family so I was the first in my family to be tested. I had increasing symptoms and was diagnosed 2 years after my DM passed from it. I was diagnosed age 32 when my DD was 8. I am now 43.
Unlike Alzheimer’s the dementia in this illness called Huntington’s Disease leaves you locked in a broken body and mind, but as it damages more specific parts of the brain worse than the whole thing, it can leave long term memory, awareness and understanding of those around you - fairly in tact, (mostly but not always) so you are unable to move or speak to communicate a single need or emotion, but you know that you are dying from this and hurting, and a care burden to family or others. In my case I also have multiple other chronic illnesses on top, and I will not be able to communicate that I am in extreme insufferable pain. So i imagine I will suffer more than most because of that.
Many people who have this have already spent most of their entire lives horribly affected by the ever increasing suffering of their loved ones, and in turn causes psychological pain, ptsd, complicated and anticipatory grief, and many spend all their life even from childhood being carers for their parents, grandparents etc, until either that affected person dies, or until the child has the disease themselves and can no longer care for themselves let alone anyone else.
The onset is gradual and most are diagnosed when there are definite motor signs as well as cognitive and psychological/emotional signs and symptoms. It affects people in their 30’s-50’s on average, however it can also be much later or earlier in life.
Worst of all their is a Juvenile version of the disease. Mostly (but not always) passed down from fathers to their children as the gene sort of mutates (can’t remember the specific scientific details) and more so in male sperm. So in ten percent of all the people who have Huntington’s Disease are children. Often little babies and very young children up to the age of 21 are suffering, progressively losing their functioning body and minds, dying before they have even lived, and often families have several children dying of this form all at the same time whilst their parent and aunts, uncles, cousins are dying from it too. Worst and cruelest of all - the children get a different but similar set of symptoms and tragically it progresses much faster and they die sooner than the adults do.
I hate the term suicide in this. The people who are wanting to use this assistance to end their suffering from terminal and progressive diseases, want to live! (Just not like this) They didn’t ask for this and would love nothing more than to be able to be around to be in their children's lives and watch their grandchildren grow. I 100% want this option for assisted dying. I don’t like the thought of barbiturates drink whilst you are awake and aware. I think you should be able to spend time with your family and say your goodbyes and then be put under general anaesthesia and then let the medicines do their job. I have had many generals and it’s just like being put into the loveliest sleep. We are kinder to animals for sure.
In conditions like mine I think that there should be the option to sign your consent and wishes for long before you get to that stage of suffering that you do not want to be in. Because as dementia progresses you can no longer consent. My only option now is to sign a DNR soon to be put in place, but by the time I would need to use that, would be the point I am already in hell. I can also choose not to have peg tube feeding when I am choking on food, water, saliva and aspirating regularly and getting pneumonia (a common cause of death in HD), but it’s hard to imagine that starvation and dehydration would be a good way to go, I came pretty close when I went through the worst Hyperemesis Gravidarum when I was pregnant, I remember I wanted to just die.
Sorry for the novel, it’s complex, extremely personal subject to me, and I struggle with communicating in shorter summed up points due to my brain/cognitive defects. Thanks to any who read all the way through.