Debi

This is the first treatment I feel deals with replacing frataxin levels. I’m very excited and honestly hopeful for the first time that a real cure is coming.
Fingers crossed that it works quickly and effectively, and it can be available to all in need soon.

I’m struggling with this myself lately. I still work full time too, so that can impact what I have energy for too.

I didn’t do it yet, but my idea was to make a chore list. Then I can try to do little things each day, checking them off as I go, rather than trying to do it all at once. Break down each task: not clean bathroom but clean mirror, cle…[Read more]

About 10 years ago, before my diagnosis, I had a lot of leg pain. My legs felt so heavy and they really just weren’t working right. I wasn’t having any other FA symptoms. Someone suggested I try a gluten free diet since gluten can cause inflammation for some. If you read about athletes using the GF diet, you’ll learn about benefits they exper…[Read more]

I am a retail manager. The position can do everything from unloading warehouse trucks to customer service to payroll reports and hiring. I’ve cut back on much of the physical tasks but there’s simply not enough other things to keep me busy full time.

I’m in the same spot. Still at full time but starting to struggle since job is mostly on feet.
Plan to get FMLA paper work in soon to help.
Not sure if quitting too early will effect chances of having disability approved or how that works.
I figure my safety is top concern. I work slower and have limited some of the tasks I do. But I feel safe still. 😉

The over active bladder is just cruel.
Me: oh good I can sit down and rest
Bladder: hahaha! No you can’t!
Me: ugh