• Cheryl replied to the topic Speech in the forum Living with FA 1 year, 7 months ago

    My family notices so they often help so I’m less stuck. Most times I just need to lay down.

    As for the winded part, get your iron checked. Mine was critically low which made me exhaust faster h

  • I have photophobia, made worse with migraine. I can actually get my vehicles tinted illegally with a waiver. I’m not sure if it has anything to do with Freidreichs Ataxia Or not. But the photophobia is bad enough I tend to avoid going outside during the day.

  • @christina-logan honestly I never even looked tho I really need to! Thank you!!

  • Choking is common with ataxia. I did a swallow study and found that my esophagus is paralyzed. I was told a speech pathologist can teach you ways to avoid it, not curing it but teaching methods to reduce the risks. That said, I do not see a speech therapist due to the expense even with insurance (my sons medical issues are priority).

  • Cheryl replied to the topic Waking Up in the forum Living with FA 1 year, 9 months ago

    Christine, it’s a pain pump placed in the spine that delivers meds directly to the spine allowing them to use a much lower dose while coating the nerves in the spine, so it works much better. I’m going to be starting the process soon since oral meds work for a little bit before they need to increase doses.

  • Cheryl replied to the topic Waking Up in the forum Living with FA 1 year, 10 months ago

    I usually cannot sleep long or spasms wake me up. They begin in my neck and end in my toes. I use dilaudid and stretches ( sit on bed, feet touching & legs bent, then lean over til my nose touches the bed). But honestly, nothing has helped majorly. I’m going to see my pain doc at UNC for an intrathecal pain pump.

  • Cheryl replied to the topic High cholesterol in the forum Living with FA 2 years, 7 months ago

    Ok I have had high lipids for a very long time. I tried diet and weight loss yet it continued to climb. It’s genetic so if your parents have it, you’ll likely acquire it as well. I was put on Lipitor 20 mg at night and it has dropped my levels to normal. Good luck!!!

  • Is he a service dog from an agency? Or your own dog that is being trained. If from an agency, call them. As a service dog, he is trained to disregard everyone and only be there for you. The problem with service dogs is people…not those disabled BUT everyone walking up and petting them. The dogs are at work and as a result should not be touched…[Read more]

  • Cheryl replied to the topic All-time favorite meal in the forum Living with FA 3 years ago

    All time favorite food is gyros, beef ribs, and my moms biscuits & gravy!

  • Cheryl became a registered member 3 years, 2 months ago

    • Hey Cheryl,
      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 ou…[Read more]

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