Christina D

I have a plate on the car I am usually in & a placard in my purse in case I go out with friends.

If you have time, money, and an aide (husband) you can go lots of places. Cruises are the best because the staff will carry your tray, move chairs, whatever. But, some parts of the ship are inaccessible no matter what they say. DC and Orlando are great but hotel rooms are iffy. San Antonio, Vegas, Seattle were fine. London was do-able, accept the…[Read more]

I got the second shot & was just tired the second day.

This has been an ongoing problem for me. Are you in a wheelchair? I am. I’m weird with meds, work for most people but not for me. My PCP and neurologist think it’s restless leg syndrome since it only bothers me at night, after dinner. It comes and goes, last night was the first night in a week. I take tizanadine when my legs bother me. Exercise…[Read more]

I could not find an affordable lightweight scooter so ended up buying a pride go-chair. Breaks down into 4 pieces, the heaviest is 36lbs.

My 2nd dose brought a sore arm, fatigue, & a sore back? but I felt ok 2 days later. Nothing like some of my friends who were in bed til day 4.

Eating out accessibility depends on the restaurant and time.
Most chains have enough room between tables between tables for a wheelchair.
If it’s busy (Friday or Saturday night) I’ll transfer to first available.

Family-owned restaurants are a different story.
I’ve had to have diners at other tables move.
I’ve had waiters move an entire…[Read more]

1 dose of the Pfizer vaccine 3/19 just a sore arm but I heard the 2ndd dose brings fatigue & chills. Anyone gotten 2 doses yet?

Patience…
I love to travel but have learned handicap-accessible differs by city even though we have the ADA.
I have been in ADA accessible rooms with 1 bar behind the toilet, beds so high I had to be lifted up & placed on, doors barely wide enough for a wheelchair. I have more examples but I’ll stop.

I leave my bars in my suitcase so I don’t forget.

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.