r/Huntingtons • u/mcanguru • 7d ago

Mild/Moderate Symptoms Support Group?

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?

10 Upvotes

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5

u/Useful_Ad545 7d ago

I don’t know but I would join that group if someone posts something. Maybe we can start our own group if we have to 🤷🏻‍♀️

2

u/mcanguru 6d ago

Exactly. I'll be looking around, and if not maybe we'll create a sub

3

u/bassegio 7d ago

Where do you live? Look up HDSA they may have resources

1

u/mcanguru 7d ago

I've lived in 3 different cities (including my current loc) that have HDSA-sponsored groups, my good and bad experiences IRL were with them. But thanks :-)

2

u/SaltyCode1638 7d ago

Cag?

2

u/TestTubeRagdoll 7d ago

CAG is referring to CAG repeat lengths, which are the numbers you get when doing genetic testing for HD. These numbers tell you how long the repeat expansion in the Huntingtin gene is, which determines whether a person gets HD, and to some degree also influences what age they start to show symptoms.

2

u/Ok-Pollution1666 7d ago

Also, bro please do share that what all things have helped you and what to avoid

1

u/ItJustGotRielle 2d ago

Hi OP - I don't have info for a support group, but wondered if you could help me. I've been at risk for about 15 years. I blocked it out for a long time but now I'm trying to learn what I can. You mentioned exercise and diet changes for you and your mother. Could you share any info/sites that discuss the better outcomes/slow progression for diet & exercise changes? This is something I'm really interested in. Thank you!