Wheelchair question

[Guest guest]

Hello!

I don't post often, but I do lurk via the email. I know that some have

experience with wheelchairs. We just got the prescription from our rheumy a

week ago. has MCTD, and is most currently plauged by Dermatomyositis.

The JDM leaves her really weak on some days, and since it's most likely a result

of the MCTD I want to prepare for the possibility of this happening again. I

have a vague idea of where to start, but I also know that there can be things to

consider that a " newbie " wouldn't know, or things to watch out for. I've

already been advised to call our hospital & ask for an eval & fitting. Any

other suggestions or ideas? Things to watch out for? I would appreciate any

input!

le (Dee) Mom to (almost 9!) MCTD- JRA, Raynaud's, Scleroderma, JDM,

Asthma

[Guest guest]

One of my sons and one daughter were in a wheelchair at that age. The one

thing I remember that really helped was having a bag or pouch attached to hold

their stuff, cause they can't hold things in their hands when they are in motion

and on the lap, things tend to fall off. If she will be in it at school, then

you will have those issues to deal with, things like elevator use, help with

lunch trays, etc (which you may already have in place). I drove my son, but when

my daughter needed to use hers she rode the bus and we had to have an official

meeting (ARD) to get the bus to pick her up. Also my son, now 16, says make sure

that she has things to keep her occupied that she can easily get to on her own.

Apparently he recalls being very bored and rolling back and forth a lot:/ ( Our

house isn't very accessible so he didn't have much room to roll. lol) Well

that's all I have, wait I remember one more thing, keep wipes with you and

gloves can be a good idea if she is gonna be moving herself manually. Now I'm

really done. Good luck to you and God bless!

, mom to (17 JPsA, TMJ)

Sent on the Sprint® Now Network from my BlackBerry®

Wheelchair question

Hello!

I don't post often, but I do lurk via the email. I know that some have

experience with wheelchairs. We just got the prescription from our rheumy a

week ago. has MCTD, and is most currently plauged by Dermatomyositis.

The JDM leaves her really weak on some days, and since it's most likely a result

of the MCTD I want to prepare for the possibility of this happening again. I

have a vague idea of where to start, but I also know that there can be things to

consider that a " newbie " wouldn't know, or things to watch out for. I've

already been advised to call our hospital & ask for an eval & fitting. Any

other suggestions or ideas? Things to watch out for? I would appreciate any

input!

le (Dee) Mom to (almost 9!) MCTD- JRA, Raynaud's, Scleroderma, JDM,

Asthma

------------------------------------

[Guest guest]

Dee,

Kat just got her wheels, finally, on Halloween. She has the stroller kind, not

the classic wheelchair type. She LOVES it and so do I! We had two temporary

ones before hers arrived. All three were great but hers is definately the best.

Make sure you get the lightest one possible and one that folds as small as

possible. We got the Convaid Easy Rider with the biggest wheels on the front

and back and the extended handles. It folds like a giant umbrella stroller so I

can throw it in the back of my van and still fit the soccer chairs and

groceries. It's the lightest of the three we've used but I'd go lighter next

time. If your PT can arrange it, have the dealer bring a bunch in for you guys

to test out. We eliminated a few choices that way. If you decide on the

stroller type, watch out for the word stroller - gets really put off

when the PT calls it hers a stroller! Good luck! You're gonna be so happy when

you get it! Shopping, walking in the parking lot, just taking her for a stroll

when she's miserable but sick of being cooped up. Ironically, you will both

regain some freedom and independance.

Ooo, one more tip, keep on top of the paper work if you are going thru

insurance. We were waiting on one Drs signature for her entire maternity leave

and no one realized! Then, we had approval but the insurance didn't let us know

right away.

Good luck!

Kirsten, mom to , 6, spondy

>

> One of my sons and one daughter were in a wheelchair at that age. The one

thing I remember that really helped was having a bag or pouch attached to hold

their stuff, cause they can't hold things in their hands when they are in motion

and on the lap, things tend to fall off. If she will be in it at school, then

you will have those issues to deal with, things like elevator use, help with

lunch trays, etc (which you may already have in place). I drove my son, but when

my daughter needed to use hers she rode the bus and we had to have an official

meeting (ARD) to get the bus to pick her up. Also my son, now 16, says make sure

that she has things to keep her occupied that she can easily get to on her own.

Apparently he recalls being very bored and rolling back and forth a lot:/ ( Our

house isn't very accessible so he didn't have much room to roll. lol) Well

that's all I have, wait I remember one more thing, keep wipes with you and

gloves can be a good idea if she is gonna be moving herself manually. Now I'm

really done. Good luck to you and God bless!

> , mom to (17 JPsA, TMJ)

> Sent on the Sprint® Now Network from my BlackBerry®

>

> Wheelchair question

>

> Hello!

> I don't post often, but I do lurk via the email. I know that some have

experience with wheelchairs. We just got the prescription from our rheumy a

week ago. has MCTD, and is most currently plauged by Dermatomyositis.

The JDM leaves her really weak on some days, and since it's most likely a result

of the MCTD I want to prepare for the possibility of this happening again. I

have a vague idea of where to start, but I also know that there can be things to

consider that a " newbie " wouldn't know, or things to watch out for. I've

already been advised to call our hospital & ask for an eval & fitting. Any

other suggestions or ideas? Things to watch out for? I would appreciate any

input!

> le (Dee) Mom to (almost 9!) MCTD- JRA, Raynaud's, Scleroderma,

JDM, Asthma

>

>

>

> ------------------------------------

>

>