Christina D

My chair is here! Only took 7, yes seven, months! Now we’ll see how long insurance takes. Because even though I have to pay 20% I had to pay $2300 before NuMotion would order the chair.  And that better not be 20%!

I used to tell people I was a Wheeble too!

Or having FA was like playing the game where you had to spin around with a bat/broom touching your forehead, stand up and walk straight. It’s fun to watch but not to live with.

This is my reminder for today!

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.

I finally got my chair order. Delivery. . .

June 7th! Uugh!

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?

The insurance process should not be this hard or lengthy!

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.

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

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.

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

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

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.

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.