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Hi Karina,

I am sorry, I didn’t want to depressed you. English is not my mother tongue language. Perhaps I didn’t choose the right words. I know FA is hard.  I see you are fully activated by your work, friends, daughters, day to day life.

I also hate to feel the pity of others. That never was my intention or feeling in my post.

Isabelle

Hi Isabelle,

Your reply has really depressed me. I see my daughters, we also text and call.  i have an aide twice per week to help me get ready for work. i just had lunch with  handicapped friends.  My students are adorable.  And yes, this disability is tough.  I have many odds against me.  But i rejoice in still being able to live alone and t…[Read more]

I’m looking into a therapist for my slurred speech, but am concerned it will never improve because of the Ataxia. I’m currently looking for copywriting work but can’t get through the interview process. So does a therapist help?

Sorry, my mom concerns were about Karina post.

Hi Victoria, I understand your concern and frustration. As a mom with FA (16, 23 years-old), it makes me sad and feel unfair the fact you don’t have your daughters anymore.  Maybe you can not fight in justice but you can get in touch with her. . Overall, my reading of your post, I feel a lot of loneliness and isolation. Do you have access to…[Read more]

When on Facebook, I love reading the FA group messages, but they also depress me.  I love it when I can help someone out, but otherwise, it gets me down to read how others are so miserable and the tons of issues that we must or will have to deal with.  It kills me to think that soon I will lose my independence and be forced to live in an i…[Read more]

I feel this so much, Victoria. Even though our circumstances aren’t exactly the same, we both are diagnosed with FA so your frustration is incredibly familiar to me. I think that connection is what keeps me going. For a long time, it seemed like my FA was only my problem. I wasn’t in contact with many others, diagnosed with the same disorder. That…[Read more]

I’ve been on amitriptyline for about 6 years each time my GP puts the dose up my urgency lessons but the past few months it’s gotten so much worse just during the day time, I have never really had I to go at night we’ll when I was pregnant i did, but anyway my husband has been putting towels folded up to sit on. It’s pretty embarrassing I feel…[Read more]

We had a wonderful experience and definitely will be glad to answer any questions!

Thank you for that clear description. Our son has just been diagnosed and I’ve been struggling to describe it. This helps