Unable to accept diagnosis of Cerebellar Ataxia

Was diagnosed due to alcohol 20 years ago. Since then the depression and anxiety has increased. Have seen all specialists over the years trying to find some hope. Had so many falls but want to be ‘normal’ again and do the things I want to do. Am so frustrated. No support from family and have no friends but I guess I pushed them away and deserved this being so selfish and negative. I still believe there must be a cure. How do I stop believing? Thanks for listening.

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Hi Chook, welcome🙂 I had problems myself coming to terms with Cerebellar Ataxia…I don’t know what caused mine.
Some people find that if it’s an Acquired Ataxia (as is yours) that symptoms can cease to progress once the cause is found……treated if deficiency, or removed as if alcohol. But…unfortunately this doesn’t happen in every case…

It’s very easy to be self-centred when coping with a chronic illness, I experienced this myself…and this does cause anxiety and depression. If you haven’t done so yet…consider speaking to your GP about this, I tried Sertraline for a short time and found it helpful.

I know from reading other posts on Facebook Ataxia Support Groups, that there is little in the way of Ataxia Support in Australia, it does help if you can have regular interaction with others. You could join Zoom Meetings…these happen on a regular basis, and it would give you the opportunity to speak, not just post online.

Best wishes :slightly_smiling_face:

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Welcome to the forum. What did your MRI show?

:slightly_smiling_face:Yesterday I was at a local support group meeting, and a new member had the same diagnosis as you.
She’s had helpful NeuroPhysiotherapy and Thiamine supplements…with regular checks of her Liver.
It’s a work in progress…at one time she was bedridden with symptoms but now can walk with the aid of a crutch.
:thinking: Have you been offered supplements.

Alcohol-Related Thiamine Deficiency - PMC).

Nothing showed up in MRI.
I was told my numerous Neurologists the damage was done. The prognosis was a chemical breakdown of the nervous system. I stopped drinking when diagnosed in 2000. My condition has basically stayed the same. Ironic isn’t it that you still look like you’re always drunk even though you don’t drink. How old is the lady you were talking to? Would be interesting to hear her story. I’m yet to find anyone whose Ataxia is related to alcohol.
Thanks so much Beryl (my mum was Beryl). We called her Beb.
Hope we can keep in touch.

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The MRI didn’t show anything to my knowledge.

Sorry, just working out what to do here. Have had a fatty liver but that’s ok now. Don’t know what NeuroPhysiotherapy is but went to PhysioTherapist for years doing tasks and exercises but didn’t see improvement.

:thinking: This was a new member…maybe 30-40.
I have seen this diagnosis on various Facebook Ataxia Support Groups…some people are on Thiamine supplements.
Many of us diagnosed with ataxia actually sway and slur as though we were drunk…it’s so misunderstood. Basically…it’s simply a case of using any aid necessary, and staying safe :slightly_smiling_face:

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Thanks so much Beryl. I wish you all the best. :heart::heart::heart:

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Chook my mom was a chronic alcoholic and diagnosed with ataxia before there were MRI’s. We were told it was alcohol caused but turns out it was genetic (My brother and I inherited it). Either way treating symptoms is about the best you can do. And it sounds like depression is another condition that if treated properly could help you feel much better. My son inherited mom’s alcoholism and tried suicide twice until he finally became sober. His 12-step brothers & sisters saved his life and he’s no longer depressed and loves the life he has. Consider AA in your area and find out about treatment for depression—its more deadly than Ataxia. Everyone here has great suggestions for Ataxia so keep reaching out. Good luck on your search for a better life.

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Thank you.
My Ataxia is not generic, wish it was so I can blame someone ha ha😁
I stopped drinking when diagnosed in 2000, stayed in Clinic for 2 months and was given some medication for alcoholism. Forgot name. Had anxiety for as long as I can remember, personality trait. Then at age 24 the depression started. Have been on all meds since then, hospital and clinics but the diagnosis was and is Clinical Depression (major depressive disorder). Even tried CBD oil. I know there are people far worse than me but it sucks. Moved to Retirement Village at 60. That’s depressing. I had no choice. I wish you all the best.

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Chook

Sorry to hear of your struggle with depression. I am retired but went to live with a good friend in Hawaii instead of a retirement village. This condition does suck but I am blessed with a “can do” adapt or die attitude and am doing well even after 23 years. I’m lucky that way. Having friends around who care about you and maybe need your help dealing with their struggles can help you too. At least it has for my son who now works as a mentor to get other addicts/alcoholics off the street and into a better place. I can’t do anything so dramatic but I really can see how little things I do help people even when they aren’t looking. It brightens my days.

Good luck to you.

Mary

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Hi Chook!

I’m 46 and I have a genetic ataxia. But I’ve had two same age peers who struggled with serious alcoholism. One was told at 28 that he was dying. His family accepted that he was not long for the world and told everyone to say goodbye to him. He got mad as h*ll that no one supported him and he stopped drinking on his own. He’s now a grandfather, doing well last I heard. He’s a sour, angry man, but healthy.

The other friend was surrounded by love and resources. Just a great, wonderful guy. I went to meetings with him myself. He never stopped drinking and he died a few years ago. He just stood up from the couch one day and died.

I understand what you’re saying about having to walk around looking drunk. We all know how that is. It’s not fair and it makes you feel bad. It sucks to be stared at. You just have to hobble along anyhow.

It’s true that the best way is to reach out and connect with your loved ones and let them help you. But if you can’t get there, don’t be afraid of letting yourself get mad. I am mad all the time, myself. It gives me fuel to get up and do things that regular people can do, but don’t.

You’ll be okay. You’re already doing the hard work. Just don’t give up.