Re: Wheelchair problems

[Guest guest]

Hey Kendra:

MJ hears ya on that one. She got her chair on the 11th (but was too sick to

use it) Today was only the 5th time using it and we have had many issues!!

Here is from last week: Wednesday I had to get up early to go to the

doctor. I had a follow up appt with the physiatrist at 2pm. We got there early

so we could stop by the equipment clinic to see if they could fix my footplate

and switch. At the doctor last week, my footplate kept falling off (not

good) and while driving, when I went over a crack in the sidewalk, my chair

would

reset itself and I would have to wait before continuing to drive (big

problem while trying to cross the parking lot!!!). When we got to clinic we

found

out about having an appointment at 4pm...no one told us. LOL! So, I saw Dr.

Borkow first. I told him I wanted AFO night spints since my ankles are getting

tight and sore. brought a picture of what we want so he knew what we

were talking about. He checked my contractures. The good news is that my

ankels still go to neutral despite not having AFO's for over 5 years. My knees

have gotten better. My right is down to 20 and my left is down to 30. My left

side is tighter than the right. My wrists are pretty good and only have slight

contractures in both pinky fingers. At 4pm, after waiting for what seemed like

hours and hours and getting sucked into Nick Jr. on the television, I went

back for my equipment clinic appt. They are not sure what is wrong with my

footplate. It is back on but it sits funny so my leg doesn't sit right so my

ankle hurts. They are going to schedule an appointment with someone from

Invacare to come and see what is wrong. My switch is too sensitive so every

bump I

hit activates the switch. We are researching options to figure out what else

might work.

And then today:

Well, after our adventures (midadventures) last week it is continuing. MJ's

reset switch on her new chair got severed today. We were getting ready to

head out for a doctors appt. and the switch wire was in the wrong place under

a pinch point and severed the wire, making MJ completely immobile. Luckily

we still have her old chair and were able to get that switch off and hook it

up.

Never a dull moment here!

caregiver to MJ, 18, SMA type 1

_http://www.mjthesmaqueen.com/_ (http://www.mjthesmaqueen.com/) - MJ's new

website

_http://www.our-sma-angels.com/Margaret/_

(http://www.our-sma-angels.com/Margaret/) - MJ's 1st website

_http://www.caringbridge.org/ny/mjpurk_

(http://www.caringbridge.org/ny/mjpurk) - MJ's journal

_http://www.our-sma-angels.com/b4sma_ (http://www.our-sma-angels.com/b4sma)

- MJ's organization

_http://www.caringbridge.org/ny/b4sma_ (http://www.caringbridge.org/ny/b4sma)

- B4SMA Information

Having courage does not mean that we are unafraid.

Having courage and showing courage means we face our fears.

We are able to say, " I have fallen, but I will get up. "

---Maya Angelou---