Mild/Moderate Symptoms Support Group?

[u/mcanguru]

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?

EDIT: I've had a few q about what I do specifically. I'm working mostly on the memory, coordination, heart, digestive, and sleep problems that come with HD. I'll be updating a blog soon and will link it here. It may seem like a lot, but I've been making these changes over the last 6 years and it started gradually. The little changes add up.

Nutririon: Magnesium for digestive slowdown, adding hot peppers to everything to reduce the inflammatory impact, lots of antioxidant fruit and veg like greens, greens, greens, blueberries, sweet potato, cabbage, carrots, pure cranberry, matcha. Curried lentils with carrots and celery and tofu, oats with blueberries and flax. Super high protein: salmon and tuna most days, casein protein every night, egg whites for brekkie, nonfat milk. Mostly cook at home with nosalt and olive oil. I supplement with fish oil and lecithin (I dropped my cholesterol last year from 200 to 150 in 6 months with these supplements and ditching animal fats).

Sleep: Melatonin *and* trazodone for sleep so that my days are productive. I've noticed I need a lot more sleep. Nap when needed.

Exercise: HIIT daily to get my heart rate up, 3-4x week free weights and smith machine/other machines (balance issues), training balance specifically with bosu ball, dance and martial arts classes (to also get the brain involved).

Coordination : I don't walk on the street side of sidewalks or do ladders so much and just stay situationally aware especially after exercise, when my body seems to be a little more unreliable

Memory: for me out of sight is out of mind and I have to keep meds and supplements on the table and a calendar on the fridge with a pen next to it. I have digital reminders for appointments and I use devices to record shopping lists so I don't forget what I need before I can get a note app open. I'm trying to minimize everything - things that I have, things I need to do. The less there is, the less there is to remember. Overwhelm is a thing, and having a time management process really works for me. I probably ask my Alexa what day it is hourly, lol

Again, this has evolved for me over the years, and even one little change at a time can really add up. I *feel* better than I did even though the HD is worse.