• Mark became a registered member 3 months, 4 weeks ago

    • Hi Mark,
      Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of our community! Please feel free to browse our topics and share your opinion. Remember, for any questions you may have feel free to reach out to @christina-logan.

      • Hello Christina!
        Thanks for the kind words. The man I am working with is a ovo-lacto vegetarian and as myself, likes herbal or natural supplements to help with FA. I am researching safe alternatives such as acupuncture and other means to help my friend. In addition, we are looking into clinical trials with his neurologist.
        thanks again, Mark

      • Hello:
        I am very new to FA and am researching all over the world and have made contacts to every clinical, natural, and medical agency possible and watching videos and reading tons of literature on FA.
        However, I would like to ask so much deep from my heart so I can understand better what goes on inside the heart and head of FA individuals. If I am overstepping myself please forgive me. I don’t want head knowledge and clinical knowledge but the heart of my friend so I can be all I can to have his life be successful and fulfilled. I dont’ want to cry here… I have asked him some but it can be uncomfortable, so I am asking here as a baseline understanding.
        Does FA affect thinking or coordination of thinking from brain to muscles? Like
        when I had bad knees my mind would tell my legs/knees to do something and they just did not respond…. Please forgive me, I ask because I want to be such a support…
        I don’t want offend…
        I need to know what transpires in the head of my beloved FA friend…i want a baseline so he does not feel alone, but with some knowledge we can heart communicate without him going thru the process of it all.
        I see his hands move slowly to do anything he needs to do, his legs are stiff, and his voice takes breath. We live in rural area and I reading as much material possible on PT, OT, and speech therapy to make sure local therapists have an idea of innovative FA treatments.
        I hope my heart is coming here…I want to be able to communicate live with my beloved friend.
        Iam sorry if I stepped over bounds… I just want to know the heart mind of a FA person who I love. Your information will help me communicate better for his life sake, and mine who loves my friend.

        • Hi Mark!

          I have answered your questions below:

          Does FA affect thinking or coordination of thinking from brain to muscles?
          FA does not affect the patient cognitively. Muscles and coordination is affected.

          I need to know what transpires in the head of my beloved FA friend:
          The Friedreich’s Ataxia News Forums and the Friedreich’s Ataxia Research Alliance (FARA) are great resource tools for community and support!

          PT, OT and speech therapy is always great to remain active and slow the progression down.

          Let me know if you have further questions!

    • Welcome to the FA Forums, Mark! We are so happy you are here 🙂

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