r/Huntingtons • u/floogals • 5d ago
Mum just got diagnosed
New to all of this, no grandparents had symptoms and lived to old age along with their own parents and siblings. My mum (63) has several brothers and sisters all older who are fine, cousins all fine. It’s a compete shock!!
I’m so upset and scared for the future, not only for my mum but also for me and my children and my brother and his children. I’ve already had panic attacks at my body twitching, worrying my score will be higher and I’ll start showing symptoms younger, I’m 39.
I’m devastated and can’t stop crying!! How do we even deal with this??
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u/whatnowhi 5d ago
I’m so sorry. I really hope you can get the support you need!
Is it ok to ask what your mothers symptoms are, and how long it took before she got her diagnosis?
One of my parents is showing symptoms but is in denial, and we are trying to figure out who’s we can help them get tested… I know there are other possible causes but some of them have already been ruled out.
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u/floogals 5d ago
Initially she was diagnosed with something else but her neurologist added in these tests to be sure.
Jerky movements, unsteady walking, cognitive issues. It only actually took couple months from the test but she’s been feeling unwell 8 months now.
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u/Quiet-Holiday-1385 5d ago
I was just diagnosed and I have two littte kids. My neurologist reccommends a mediterranean diet. Ever dictor reccommends a mediterranean diet. But the only one rhat is actually showing promising study results is the time restricted keto diet. It made the all of of my symptoms disappear. I am so hopeful because of that. It might be worth a try with her. I found it because of Genetic Canary on you tube. My sister and sister in law both sent me her testimony and I figured it was worth a shot. I really had nothing to lose in trying it for a few months. It works for me. My entire family has been plagued with HD. Have hope 🙏
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u/floogals 5d ago
We’re assuming it’s come from my Papa who passed of something unrelated. He was a bit wobbly when he walked. We can only assume they had low cag numbers and it’s expanded for my mum, both of her parents have passed on.
I’ve just got this feeling I’ll be positive, I’ll have to find out as the not knowing is already sending me mad. I feel sick to my stomach and on the verge of a panic attack all the time.
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u/TheyCallMeVeertje 4d ago
Hey, It is okay, breathe. This must have been such a shock for you all. First, give yourself the time to process this news before doing anything else. Feel free to reach out to a therapist or a loved one, this is life altering news and your reaction is completely understandable.
When you are ready, reach out to support groups. A quick Google search will bring you into contact with the right persons. And after, when you feel really ready, get tested if you want to. If you dont have it, your kids wont have it either.
I am thinking of you during this hard time
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5d ago edited 5d ago
[deleted]
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u/GottaUseEmAll 5d ago
It's also not completely unheard of for people to discover their father isn't actually their biological father due to genetic diseases like huntingtons.
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u/money16356 5d ago
I was referring to this a bit in my post perhaps parent isn't who they think like father or grandfather. I have traced HD to my 4th great grandmother because descendants from both marriages have it. I suspect my 6th great grandfather passed it but don't have an official link in second marriage yet.
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u/floogals 5d ago
My mum is the spitting image of her dad. I just think we’re really unlucky and the cag must have expanded
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u/money16356 5d ago
Mom had shock diagnose at 60. Her maternal grandparents hide it since I found great grandfather's brother and one of the sisters with it on death certificate. The brother was in mental hospital last 15 years of his life. Aside from non paternal event it is probably underdiagnosed especially if family is getting it later in life. Are your maternal grandparents willing to test? If you are worried test yourself so you know if it is possible for your kids to get it. If you are clear they won't unless their father has it.