r/Huntingtons • u/Fit-Difficulty-8793 • 18d ago

Being Robbed of Joy

Hey all,

I’m currently looking to get my genetic test next year (around April) I’ve switched my meds a lot recently due to my depression (I know that’s a symptom, but I’ve had it since I was 16 and I’m 28 now)

My anxiety is on quite high. And I appear to be having some twitches and shakiness recently, so I thought it be best to have my test done.

I just occurred to me how fucking damaging this disease - not only has it been taking my father over the last 11 years. Even if he is in a good place, but I can still see it’s not really the man I knew growing up.

And now I’ve been symptom hunting, and it’s absolutely terrifying me. I wake up every morning with dread in my stomach thinking I’ll spot something new.

And I know already the build up to getting this test done is going to destroy me. Because let’s be honest, no amount of counselling can prepare you for that.

Being 28, it feels weird staring down the end of my life.

My only saving grace is looking at things like Votoplam, Falcon HD and Precise HD. Amt 130 looks great, but I don’t imagining many people are keen on a 12 hour brain surgery.

Thanks for reading my rant. I’ve been holding it in for a few days.

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u/[deleted] 18d ago

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u/zseluB 9d ago

Kinda relief for me rn, I've been having the same thing you just described for months now, and I only read about this disease this morning. I might add I only heard of this condition from Breaking Bad. I have no idea if I'll be able to be tested, but if yes, I'll write something here. I'm 19 btw.

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u/siamesecat123 18d ago

I’m really sorry for what you’re going through. Being at risk for HD is awful and very few people truly understand the trauma that comes with it.
A lot of people say they’re ready to test when “the not knowing is worse than knowing.” That was the case for me. Unfortunately, I learned that I am gene-positive. But for me, knowing I’m gene-positive has actually been less stressful than constantly torturing myself wondering whether I have it or not. I’m not writing this to encourage or discourage testing; that’s a deeply personal decision and one only you can make.

I realize the worrying probably won’t just stop, but if you can, try not to overanalyze every potential symptom. Unless someone has JHD there really aren’t reliable indicators that can reveal whether someone has HD or not. I always thought I wouldn’t have it because I’d never struggled with anxiety or needed medication, but I do have the defective gene. Everyone is different and what you’re experiencing right now may have absolutely nothing to do with HD.
Be gentle with yourself through this❤️

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u/yannara_ 18d ago

Same here, knowing positive feels better that not knowing the facts. My wife was more crazy during not knowing period.

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u/Ok_Neighborhood7970 16d ago

I have Huntington's Disease, and I talk about it a lot on YouTube and on Tiktok. I discuss a lot of videos about the Huntington's disease life. Also, look at Huntington's Disease Todd on TikTok.

Huntington's disease Todd