[Tina-D]

I love cruising. But being in a wheelchair means not doing much off the ships. I have started renting a power chair thru the cruise line. They will leave the chair in your room & pick it up after.

[Tina-D]

I finally got my chair order. Delivery. . .

June 7th! Uugh!

[Tina-D]

I saw the “sales” guy today. PT guy on Monday then back to Cigna. My neurologist gets involved and a decision will by May. Probably $6,000. Or I can buy the same chair for $3590 thru spinlife.com and get it in 2 weeks but no insurance. Can anyone think why I should wait for insurance?

[Tina-D]

The insurance process should not be this hard or lengthy!

 

[Tina-D]

I currently share a bed with my husband too that has nothing adaptive. I can no longer get in/out without assistance. I used a bed rail for about 10 years. I am now having difficulty turning from side to side. Not sure what device is next.

[Tina-D]

I agree with Isabelle. Try to find a neurologist studying FA by calling NAF, MDA, FARA.

[Tina-D]

Research. research, research! I use google to find sites that deal with where I want to go. Info is always updating so always start with a new search.

[Tina-D]

Finally downloaded this app. Now I have to see what it’s about.

[Tina-D]

Best wishes to your son and you! Surgery is just as hard (stressful!) on Moms!

 

[Tina-D]

Being unable to walk in a straight line. In a hallway I would start in the center and veer into a wall. But I didn’t get diagnosed until  6 years later. No voice problems until much later.

[Tina-D]

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

[Tina-D]

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 Tube which they promote as accessible but it’s not, the buses are. I’ve never been able to rent a beach wheelchair but would like to sit on a beach.

It always takes extra time to research and plan. I’ve used https://curbfreewithcorylee.com/ too!

I always pay more because I reserve early, six to ten months early.

I never travel alone. Because of broken promises and no recourse.

[Tina-D]

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

[Tina-D]

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 does not help me. Diet changes have not helped. Keep looking for a solution because people have found help.

[Tina-D]

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.

[Tina-D]

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.

[Tina-D]

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 table!

Over time I learn the restaurants to avoid.
I hope they keep take out like now. That’s how we’ve been eating out this past year.

[Tina-D]

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?

[Tina-D]

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.

[Tina-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.

[Tina-D]

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.

[Tina-D]

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.

[Tina-D]

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.

[Tina-D]

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