I’m 70 and retired after 32 years with the VA as a Blind Rehabilitation Specialist. My Ataxia was diagnosed about a year ago after my Neurologist ordered an MRI. Specifically, it’s Cerebellar Ataxia from Dilantin toxicity-I’d taken Dilantin for 30 years because I have a seizure disorder. It was difficult to learn this, but it explained my balance and walking difficulties. The Dilantin also caused Peripheral Neuropathy in my feet and that’s impacted my walking as well. I’ve had a dozen falls in the past year and transitioned from a cane to a walker-thank goodness my last Bone Density Test was normal. I’m still having a hard time emotionally with all of this and how it’s impacted my life. I’d like to hear from those who reached acceptance and how they did it.
I’m 43 and learned I have spinocerebellar ataxia when I was 27. Most of what I heard about ataxia was disheartening. I was angry for a few years. I think some amount of anger is good. You should not incorporate the ataxia into your identity.
A good amount of function can be regained by any of us simply by finding new ways to do things. Visual aids like walking on a path instead of across open ground helps. Walking with another person so you can match their gait. Put your hand on things to remind you where is up and down. Wear different shoes. It’s crazy how much little things can help.
I eventually reached a place where I could say, yes this sucks, but I enjoy my life anyway.
Basically I would say don’t let people feel sorry for you, never stop trying to do things independently, and steer your energy toward positive future goals.
Just one reply after 27 views of my post? I was looking forward to welcomes and words of support or encouragement. After a lot of internet searching, I thought this forum would be the most helpful in dealing with the emotional turmoil of living with Ataxia.
A belated welcome Pat.
I’m 69 and at one point I wondered if Epilepsy medication contributed to my diagnosis, I’m still on the fence as to whether or not it was linked to my chronic eye problem.
I’ve dealt with symptoms of one kind or another since the early 1990s, and so it seems reasonable to assume I must have reached some sort of ‘acceptance’. I’ve gotten used to the frustrating, debilitating symptoms, it’s become a way of life, but it still causes me pain emotionally when I can’t do basic stuff like carrying my baby granddaughter around.
Most days I find I can go with the flow, because I’ve come to recognise that staying relaxed and stress free can help with symptoms. The more multitasking I try to do, the worse I feel.
But… I don’t know if anybody can honestly say they’ve truly accepted the situation…
My name is Shamettra Dimmer. I’m 44 year’s old. I have spinal cerebellar ataxia 2. I don’t as diagnosed 2years ago. I went for aMRI. My disorder is hereditary. All I do is sit here and reminisce about the days when I use to walk without help. I’m currently on a rolater walker but I’m strong and I don’t believe that in 8 more years I’m suspose to stop walking. God has a better plan for me. I would love to hear from others like me.
Hi and welcome. I’ve had Ataxia for over 50 years now. If I learned one thing, it’s a very bad thing to reminisce and dwell on life when your health was “normal”. You must learn to take things one day at a time and look toward the future and NOT in a negative way.
Hi welcome.
2yrs isn’t very long to come to terms with a diagnosis, even if you already have family who are diagnosed. It’s good to bear in mind that even with family history, not everyone progress or deteriorates at the same rate Keep well and stay positive