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Ataxia Support

Hello, My Name is Dave

Good day fellow ataxins’ My name is Dave, 44, I’m from Ontario, Canada. I have been battling some form of ataxia/MSA for several years now. (2009). I am a Creative Artist, who loves to paint and draw. I am divorced with 2 children, and have a girlfriend with 4 children. I am still walking although wit some assistance. Every day brings a new challenge with ataxia. However it is important to adapt, and find new ways to cope. For those of you suffering, no one can realize your plight, however, you must carry on. I have found that all too often it is easy to just give up, this is not how to do it. I have suffered through 2 bouts of depression (both times attempting suicide) I no longer have the ability to experience intimacy, I have lost my ability to work, I have lost many of my autonomic functions such as eliminating. I have experienced many slips, trips, and falls, I use to be an active individual; cycling, skiing etc. and now can’t, however, I have come to the conclusion that it is better to just keep going no matter what. I tire easily and become weak, although i just take more time to complete things.I have been stopped by the police for suspected public impairment. I now use a walking stick and wheelchair park to remove all doubt about my disability. I have surrounded myself with people who love and understand both professionals and friends. That is important. Hello, my name is Dave! I have ataxia.

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Hi Dave, welcome from Linda in Alberta. Thank you for sharing. We are all experiencing similar things and sharing does help, for me I do not feel so alone.

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Hi Dave, I’m so glad you seem to be in a more positive place after your depression.

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Hello, Dave, I can relate. I am 62, and have had ataxia since 6th grade. At that time it was not diagnosed, but I had the symptoms and my mother sent me to a psychologist because she thought that I was seeking attention and it was all in my head. I take Diamox and live symptom free now. it is a miracle drug. The generic form is Acetazolamide. My eldest son also has Ataxia. He never finished high school because he was sick a lot with the migraines that came with this condition. he is now 31 but is symptom free and has a job now. I feel like my life mirrors yours. I was a skiier, I am a professional artist and a poet. I’ve been widowed since 2008, and have two sons. I am here if you need someone to talk to, or to just listen. it is nice that you have a girlfriend…I just started dating this year, and got my health in better shape. I walk 2 to 3 miles a day now and am a mentor of my own writers group for the local community writing center in Salt Lake City. Life for me is exciting and fun now and I no longer live in fear of when I will have an attack and be unable to walk. I also had severe muscle spasms that preceded these attacks. It has been 3 years since I had 3 to 5 attacks a week. I have an attack if I forget to take my medication. I wish you well, and hang in there, there is hope. I no longer need a cane or wheelchair.

JoAnna

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Hello Dave ,I understand were your coming from.I have ataxia type 7.There is no medicine they say will help.I lived a pretty active life as well.Was able to work a job till 2014.When driving,seeing,walking became more of a issue then it was.But every day there is hope.Exercising,my personal relationship with family,the Lord,friends helps me realize life is not as bad as it could be.I go every week and volunteer at a local nursing home with family.Make holiday crafts for them.Focusing on others has helped me look at things differently.Realizing that it’s not as important what I could not do but focusing on what I could do.Hope this helps.I definitely understand where your coming from been there.Wishing you a good life,Praying for you.Earlene

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Hi Dave :blush:welcome,
It took me too long to to accept I would be safer, other people would see I needed to take care, and for me to start using a walking stick and rollator. Eventually common sense kicked in, and it actually gave me a new found confidence :slightly_smiling_face:

Severe depression is horrendous, I’ve been there myself and I’m thankful I found a way through it. It takes a lot of inner strength and determination, it’s far from easy.

An interest in Art, and Crafts in general, hit me just before my symptoms became troublesome😏 I’d gone to college as a mature student and was apprehensive anyway amongst a bunch of teenagers.

I completed and passed the course :slightly_smiling_face: But, I regret not being interested in pursuing this earlier :smirk:

These days my hand/eye co-ordination make projects taxing but I still like to keep my hand in :blush:xB

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Thanks Beryl_Park!

I Think the most depressing part for me, was not being able to provide for my children, or what they thought of me, what their friends thought, was I an embarrassment to them? However, I learned that just being there for them meant so much more. And furthermore, disabilities are not an embarrassment anymore, whether you use a walking stick, a walker, or wheelchair. Oh folks still stare and wonder what’s wrong with me, but I just stare back, and occasionally they engage in some sort of conversation.
I think we all incur regrets at some point in our lives, what is important is to remember that there is no such thing as “time wasted” in doing something you love! (that’s my personal opinion).
Anyway… I just wanted to say i can totally relate to your situation. And as we say in Canada…“Keep your stick on the ice, we’re all in this together”

Dave

:blush::+1: As we say here in Newcastle ( NorthEast UK)
‘gan canny hinney’. Take it steady my friend :blush:xB