I'm 37 with sporadic cerebellar ataxia and honestly most I try hard to adapt. I am in the USA and a mom of 5 yet only 2 are living with me now because of this mess. It has only been 2 years and I have seen how you can go from healthy, active, and outgoing to this. I barely do much and it kills me. Family started off with the help but didn't think It was incurable and doctors don't know. I truly don't like me and miss my kids and working. Just needed to vent!
Sporadic Cerebellar Ataxia : I'm 37 with sporadic... - Ataxia UK
Dar NPJOSEPH81, Vent all you'd like, as it's very therapuetic! I'm so sorry you're dealing with ataxia, as it's very frustrating, as well as challenging! I'm older then you, 64, and have had ataxia since I was about 43, although I was diagnosed at 49. Up until 2017, my diagnosis was Sporadic Cerebellar Ataxia (same as yours), although after having genetic exome testing (as well as a skin biopsy followed by a specialized blood test), I found out I have ataxia due to adult on-set Niemann Pick C1 disease (NPC). I live in the USA (State of Michigan) also. I exercise for strength and balance and try to eat a healthy as possible. My best to you..., ;o)
Vent away! This disease sucks so bad 😐...I’ve been fairly recently diagnosed with acquired CA after 8 years of testing and being told it was “all in my head”, 😂😂😂😂, how funny is that!!! I’m so much worse than I was one year ago...my disease crept very slowly and now is picking up speed and haulin butt! Since no person alive knows jack crap about this stupid disease I literally am a passive participant in my own health 🤬 as are all of you. I’m sorry any of us has to even be on this site but I’m glad it’s here 😎
Right on! Exactly how I feel! For years, my doc would make me feel like many of my symptoms, were minor, and “all in my head” - so to speak. So, finally, when I had a bad fall, with a concussion and blunt force trauma, and he couldn’t come up with any answers, that I had a physical problem, my daughter, who is an RN, had had enough, and moved me from our small town, to the big city, where there were specialists. My Internal Medicine Doc, and a neurologist/movement disorders specialist, both came up with me having Cerebellar Ataxia, and Parkinson’s Disease! It’s been very difficult for me, as the PD, is progressing. No Doctor now, makes me feel like a ‘turkey’!