daily difficulties living with ataxia

Hi.

I had ataxia for several years now, probably my disease started developing early during my childhood.

I never performed well in any sports, I always had troubles reading and writing. Now well into my adult life I hold several educational degrees ranging from craft certificate to high school engineering diploma.

During my life span dealing with ataxia I have grown tired of confrontations by authorities having to justify my appearance. This has caused high level of anxiety regarding socializing and I´d take the long road around any situation that could lead to confrontation.

With several years hard work towards my goals I feel like there is no end to it, I feel like I will never be accepted for a regular work which has led to times of depression.

My disease will not stop worsening at the same time employees market roughen up, which leads me to worry allot about my future, how can I provide myself, do my disease stop my from having a family of my own not being able to provide for myself or them? it does not feel right.

Along with other symptoms like many of you might be familiar with I experience:

Imbalance, poor coordination, slow and sometimes sloppy speech, irregular eye movement, tiredness, leg pains and insomnia.

To be honest living with a rare disease has been tough and I dont know how to co-op with it anymore.

I´m not from U.K and was glad to learn about this community where I could post my concerns and hear from a community what they do for a living. And how you all deal with anxiety for confrontation.

In my country there is very little knowledge about ataxia and per now i´m on no medications and never have been, but are willing to try any drugs that can help me deal with some of my issues.

Regards :)

4 Replies

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  • ataxia.org.uk is our support group in England. You could contact them in the new year and see if they could be of Any help. They have many publishcations and information.

  • Hi as lovely one said I would contact Attaxia UK they maybe able to help you with some of the difficulties you are facing. It sounds like you have done well despite your challenges with attaxia. Your positivity and tenacity is your biggest asset keep hope keep connecting with others who understand your struggles and I am sure you will find solutions and coping strategies.. The Attaxia UK site also has some helpful advice for you and your doctors that can be downloaded stay strong!

  • I too have had Ataxla, Friedreich's Ataxia in my case, a long time. Aeyou ale[r female? There isn't any treatment for FA. I just try to keep active standing in a frame every day and exercising my hands, and regular exercise at the gym.

  • I'm a male and was diagnosed several years ago. I have been lucky, so far much of my mobility has been preserved.

    I exercise regularly too, that way neurological pain in my thighs will be less frequent. Still I can't see myself doing well in an 9-5 job.

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