Just learned family has ataxia (SCA 3) - looking for support
Hi all,
This community is really helpful and I’ve been reading through for a bit. We learned recently my grandmother (77 yo) has SCA 3 (with 60 something CAG repeats) - she has had mobility issues for years but was never particularly active. She currently can only walk with a walker and requires a lot of support going up or down one step.
My dad (56 yo) is now getting tested this week and I’m fucking terrified. For the past couple years we’ve noticed some balance issues in him while hiking. He keeps very active and works out a couple times a week, but is struggling with the balance. I’m pretty sure he’s gonna be positive. Which gives me and my siblings a 50% chance of this. So most likely a few of us will have this, along with some of my cousins (I have a big family).
I’m in my mid 20s and this is making me have so much anxiety about the rest of my life. I’ve never had the best balance or flexibility like my dad’s family so I think I likely got their genetics here. At least I can ensure I don’t pass this on via IVF, but I’m single rn and worry no man will want to be with me if there’s a 50% chance that post 50 ish this will be impacting me.
And it’s progressive and eventually I’ll be disabled and need a caretaker - incredibly scary thought as I’ve always been very active and I rely on physical fitness for my mental health. My siblings and father are also very active, so this is a huge mental burden.
And it seems like I’ll need to quit alcohol? I don’t want to get tested for this anytime soon, but in the 50% chance I have it seems like alcohol is incredibly destructive. Is it okay to have a drink occasionally, or do I need to cut it out entirely?
The only thought that’s a little solace to me is that this mutation was only discovered 30 years ago, so in another 30 years by the time I’m 55 I pray there is better treatment. But can’t bet on that. And my dad is already showing symptoms (though works full time still and stays active), and I really can’t stand the thought of watching him decline. Troriluzole looks promising, but if the FDA doesn’t go back on their decision there we are fucked.
I’m sorry for the doomer post, but I am just struggling with this so much. Talking to family helps a bit, but talking to friends makes me more depressed because most of them will never have to deal with something as horrific as this. It just feels like the rest of my life has been cursed.