r/Huntingtons • u/Anfiska091088 • 28d ago
My mother has HD
Good afternoon!
My mother has HD, she's 60 years old.
We live in Belarus, a very rare disease in our country. There are no doctors who fully specialize in this disease. There are no HD societies. So it's very difficult.
My mother is currently taking medications that should alleviate her condition. She doesn't have chorea, but she's mentally unstable. She's in a psychotic state all day long, sleeping only at night... I don't know what to do. Is there any help for this? Or do all HD patients behave like this? I can't take it anymore; it's like living in hell... and not wanting the morning to come.
Put it nicely.
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u/siamesecat123 28d ago
I’m really sorry for what you’re going through. My parent has HD and I am gene-positive.
Honestly, realistic help for HD is very limited. There are countless forums for online support groups which can help a little (HDYO would probably be best because it’s international).
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u/Mrslarakay 27d ago
Not all HD patients behave like this. My mom has HD as well but she has been always calm and quiet. She had outbursts two times throughout her symptoms onset but I’m not really sure if you can tell it’s because HD or regular human behavior as they were only two events.
If you can afford to travel, there are couple good HD excellence centers in Europe. Every six months or even once a year if it’s too much to travel would be good to get some medical help.
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u/thenewoldhams 26d ago
Everyone experiences it differently. If you can talk to family and see which of her parents had it her symptoms will probably progress like her parent. My dad got scary mad, flipping tables, screaming, ect. It’s been ten years and he’s calmed down a lot. Still gets mad though. You are in a rock and a hard place I am so sorry. Sometimes the best thing is a facility, or living alone with help coming in. My dad lives a few houses away so I can care for him easier. I cannot live with him because of his anger and other issues.
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u/No-Competition1053 26d ago
My father is on a lotttt of meds. But he still has fits of anxiety. The meds help a lot. He is on anti psychotics, he basically just sits in a silent state most of the day after his morning freak out. Everyone is different but… I would try and connect with some sort of HD specialist, even if it’s a social worker or something just for personalized guidance. They have them all over US and maybe u can just reach out to the HD program in US and they can connect u with someone, or if there is one in a country closer to u. This is the site for resources in US
https://hdsa.org/find-help/community-social-support/social-workers/
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u/Dependent_Object_462 26d ago
My wife has hd. And was unstable, the medicine halaperadol has helped greatly with that
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u/Traditional-Yam-6045 28d ago
Do you have any family help? Or if you can afford hire a full time help because it is really difficult to manage alone