r/huntingtonssupport

Hi, I've already thought about getting tested and I've read pretty much every blog, reddit post, and website about the pros and cons of knowing my gene status. I'm 19 years old and my mom, 47, is getting her genetic results in 5 days. She's been open to me about her testing process, her thoughts and anxieties about it. If she's positive, I think I'll want to get tested, but I'm scared that I might get seriously depressed or anxious no matter the results (if its positive, duh, if it's negative, survivors guilt). I'm going into my second year of university studying chemistry, and I've been heavily debating continuing down the HD research path. My family is very open about HD, my aunt is a pretty established researcher within the field, so I've been thinking about it for a while.

Anyways, knowing if I have HD will definitely influence my career and life choices, and would affect the way I form relationships and keep the ones I already have. The entire testing process for my mom has been super anxiety-inducing for me, since it took multiple months of waiting and uncertainty. I think personally, I'd rather know while I'm young so I can enjoy life while I can still live it.

If anyone's in the same boat, what did you do? Do you think it's better to wait until I'm a bit older? Or just get it done and over with?

I have HD and mild to moderate symptoms. I'm looking for an online support group that understands this phase. I'm not "symptom hunting". I absolutely have a positive attitude, and I don't catastrophize or guess about the future. I'm generally pretty happy.

I have memory issues, chorea, proprioception and balance issues, and I have a lot of great workarounds that continually need adjusting. I'm still living my life. I made a lot of diet and lifestyle changes that have worked for me and my mother, who outlived her younger sister (who didn't make diet and exercise changes) by 20 years. All 3 of us had the same CAG.

I'm not looking for a place to compare myself to others, whether later-stage HD folks or those who aren't HD positive. I'm not up for gaslighting me out of legitimate symptoms or hearing "you're doing fine" just because I'm not in a later stage. I'm also not up for "that sounds like normal aging". I've read a lot of the comments here and feel like I should go ahead and say that my neuro says otherwise about both, just to clear up any potential misunderstanding ;-) I've been in HD support groups IRL and have had both positive and negative experiences.

So that's my story. Anyone know of an appropriate group? Anyone else in my situation?

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.

#huntingtonsdisease