Christina D

I haven’t driven in 6 years. And miss it. I go out once a week. I’ll go anywhere, even just to sit in the car and let my husband run into a store.

CBD causes me anxiety. I have the opposite of what should happen. I understand that this is a rare reaction but want to make people aware.

I don’t think this is stretching, but I do lay on my back and pull my knees up to my chest. My legs are still numb until I am up about 5 minutes. Please post details about your stretches.

I had surgery, 3 Harrington Rods, because it was years before my FA diagnosis and my parents didn’t believe in the genetic thing. As far as I know, he should keep getting the curve checked because with FA, muscles get weaker over time.

A heating pad or hot-hand for feet that stick to socks.

I do what Grant does. And, make sure I have the person’s attention by using their name & pausing until I am sure I have their attention. I’m also less vocal than I once was because I have to repeat everything.

Frankie, do you have a list of FA exercises?
My knees do knock and my thighs feel locked, nothing keeps them separated.

I am going to try Baclofen. CBD & THC give me anxiety. I take Tizanidine now. It usually works.

I sound like Becky but my kids were born in 1997 and 2000. I went from pushing a stroller to a rollator. In 2008 (age 39) I started using an electric scooter out of the house. I started using a wheelchair in the house in 2012 (age 43) occasionally. I went full time wheelchair in 2014. My imbalance spurred each change.

I would change walking. Now that I am always in a chair I can no longer visit friends, I cannot walk up steps to their front door. I cannot walk upstairs to my children’s rooms. I cannot visit shops/museums/parks because I need assistance in the bathroom and most public restrooms are gender specific. Although that is getting better. I can’t walk…[Read more]

I was told water has a low viscosity (The viscosity of a fluid is a measure of its resistance to deformation at a given rate. For liquids, it corresponds to the informal concept of “thickness”: for example, syrup has a higher viscosity than water) so I drink water slowly, through a straw. Sometimes I still choke and cough. That leads to people…[Read more]

I hope someone replies because I was trying to find a wheelchair that rolls better then what I have. Maybe not a motor, just wheels that move with a lighter touch.

Did you find a house? I moved to a bedroom-on-main 2 years ago. We discovered houses say they are wheelchair compliant but they have narrow hallways, weird angled walls, or sunken rooms! Whatever you buy you will have to remodel – I have done 2 bathrooms and added 2 front door ramps. And nothing is cheap but, regular contractors can do the work so…[Read more]

I don’t know if it is FA. I always thought it was a side-effect to my meds. I just try to drink more water. And yes, that does lead to more trips to the bathroom!

I drove for 20 years after my diagnosis. I stopped because my reflexes got too slow. I still miss it after 6 years.