Wheelchair

[Guest guest]

A very good friend of mine with CFIDS uses a wheel chair becasue of the

fatigue. Just think of it as temporary; untill you recover more energy.

[Guest guest]

.... what Laurie has done (and I did many months ago) is wear a thick 'painter's

mask'... and carry a few piece of the good licorse... it gave just enough

'extra' to make it possible... but that depends very much on where you are at...

If someone asks why? - " He has a weakened immune system " (true - but not the

reason to wear it)

----- Original Message -----

From: Philip L Comer

[Guest guest]

Phil;

I have been giving some thought in this direction too and our loss of

mobility is something we grieve for.

As you perhaps know ... I am the person who has been doing all the

posting about mitochondrial disease. I am *not* suggesting that this is

what you might have, but I wanted to share with you that a number of we

mito patients have purchased the scooters and love them because they

give them their mobility back. Somehow there doesn't seem to be the

same stigma (if that is the right word here) attached to the scooters

..... we see them on the streets much more often than wheelchairs! If

you have a problem with sitting upright as well as lacking energy for

getting around, then a wheelchair is what is indicated ..... but if you

have no problem with the sitting, then a scooter may be the answer for

you, too! I just am having a little difficulty taking the plunge!

<Grin>

Shepherd, Canada

Philip L Comer wrote:

> ..... I'm wondering about getting a wheelchair as it might make it

> easier for my wife and son and I to go out and do things.

[Guest guest]

Phil, I think it's a great idea! You can participate in family activities. I

would get tired when sitting too and if I can have a head support, it helps.

-----Pùvodní zpráva-----

Od: Philip L Comer <philcome@...>

Komu: onelist <onelist>

Datum: 3. února 2000 18:11

Pøedmìt: Wheelchair

From: Philip L Comer <philcome@...>

This is really difficult for me to bring up as I guess it's my pride but I'm

wondering about getting a wheelchair as it might make it easier for my wife and

son and I to go out and do things. I'm simply too exhausted to stand and walk in

museums and other places. I'm wondering if anybody else on this list does this

to help deal with the fatigue?

Phil

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[Guest guest]

>>Phil wrote: easier for my wife and son and I to go out and do things<<<

::: Maybe a supply house would rent one, or ask if someone just

bought one , get their name if in your neighborhood, you could see how it

does, seems the skooters are the popular choices. MS chapter has names of

co's. that might have a trial offer,

Then you could have a choice, when you wanted to stretch your legs your

Children could watch the skooter.

[Guest guest]

,

I believe you can get those TRX seating systems are available for most

wheelchairs because they are manufactured by a separate company (not

typically the company that makes the chairs). For example, pride offers

the seating system options below, but they only make the chair base, not

the power seating system. So, I believe you should be able to get many

chair manufacturers to provide that seating system you want.

Jay

http://www.pridemobility.com/quantum/synergy/Power_Positioning/power_pos

itioning.asp

<http://www.pridemobility.com/quantum/synergy/Power_Positioning/power_po

sitioning.asp>

wheelchair

Hi all:

We are searching for info about a wheelchair (that is similar to the

Permobil

power chair. We know it is not Bounder, but has tilt, recline, and a

seat

elevator. MJ will probably need a new power chair yet again as hers is

quickly

dying. Thanks.

caregiver to MJ, SMA type I

<A HREF= " http://www.our-sma-angels.com/Margaret/

<http://www.our-sma-angels.com/Margaret/> " >

http://www.our-sma-angels.com/Margaret/

<http://www.our-sma-angels.com/Margaret/> </A> MJ's website

<A HREF= " http://www.caringbridge.org/ny/mjpurk

<http://www.caringbridge.org/ny/mjpurk> " >

http://www.caringbridge.com/ny/mjpurk

<http://www.caringbridge.com/ny/mjpurk> </A> MJ's journal

<A HREF= " http://www.our-sma-angels.com/b4sma

<http://www.our-sma-angels.com/b4sma> " >

http://www.our-sma-angels.com/b4sma

<http://www.our-sma-angels.com/b4sma> </A> MJ's organization

<A HREF= " http://www.caringbridge.org/ny/b4sma

<http://www.caringbridge.org/ny/b4sma> " >

http://www.caringbridge.org/ny/b4sma

<http://www.caringbridge.org/ny/b4sma> </A> B4SMA information

It's YOUR life - imagine the possibilities!

Aren't YOU worth it?

-Helaine Iris-

[Guest guest]

Can't take it in to the shop? How getting somebody to take some

pics of the whole mess and posting them on your site. Maybe if we

can see it we can give you some ideas.

>

> my wheelchair went dead after i ran over a cord that was hanging.

and a

> black piece popped off the end of the cord. my wheelchair will

turn on but it

> just blinks. DOES ANYONE KNOW WHATS WRONG IM GOING CRAZY

>

> Thanks, --personal webpage:

> http://hometown.aol.com/heaven20seven/index.html

> " No pessimist ever discovered the secret of the stars, or sailed

to an

> uncharted land, or opened a new doorway for the human spirit. " -

Helen Keller.

>

>

>

[Guest guest]

What type of chair? Did it get switched to manual push mode? Mine says

locked when it's in push mode or when i elevate my seat or recline too far....

[Guest guest]

Did you call your vendor?

L

heaven20seven@... wrote:

> my wheelchair isnt working. the screen say: " this unit is locked " does

> anyone know what that means or how to fix it? im already going crazy!

>

> Thanks,

> J e s s i c a

>

>

[Guest guest]

My daughter is a type 2 and I had to fight a hard fight with the ins company for

about a year before Sierra finaly got her own!

Shay

Sometimes the situation is only a problem because it is looked at in a certain

way. Looked at in another way, the right course of action may be so obvious that

the problem no longer exists.

de Bono

wheelchair

Hi, my name is Rene and I live in the Austin area and I have a son,

Jake, who has SMA III. We went to his doctor in Dallas on the 2nd of

April and they wrote him a prescription for SMO's and a wheelchair.

The wheelchair is going to cost more than 2000. The problem is our

insurance has a yearly deductible of 2500 and so far we've met 1000 of

it. Once we meet the deductible our insurance covers at 100%. I

contacted the MDA and found out that you are elgible for 2000 dollars

towards either one or the other. They told me they weren't sure it

he'd get the help because they usually let the insurance cover first

and then MDA would cover what was left up to 2000 but because the $

was going towards the deductible before the insurance has covered

anything they weren't sure. I'm nervous to think that he might be

denied help. Does anyone have any advice or information for me.

Thanks so much,

Rene

________________________________________________________________________

AOL now offers free email to everyone. Find out more about what's free from AOL

at AOL.com.

[Guest guest]

I don't think there is a fight here. The deductible is $2500.00.

Deductibles are not negotiable.

Lori

journey1414@... wrote:

>

> My daughter is a type 2 and I had to fight a hard fight with the ins

> company for about a year before Sierra finaly got her own!

> Shay

>

>

>

> Sometimes the situation is only a problem because it is looked at in a

> certain way. Looked at in another way, the right course of action may

> be so obvious that the problem no longer exists.

>

> de Bono

>

> wheelchair

>

> Hi, my name is Rene and I live in the Austin area and I have a son,

> Jake, who has SMA III. We went to his doctor in Dallas on the 2nd of

> April and they wrote him a prescription for SMO's and a wheelchair.

> The wheelchair is going to cost more than 2000. The problem is our

> insurance has a yearly deductible of 2500 and so far we've met 1000 of

> it. Once we meet the deductible our insurance covers at 100%. I

> contacted the MDA and found out that you are elgible for 2000 dollars

> towards either one or the other. They told me they weren't sure it

> he'd get the help because they usually let the insurance cover first

> and then MDA would cover what was left up to 2000 but because the $

> was going towards the deductible before the insurance has covered

> anything they weren't sure. I'm nervous to think that he might be

> denied help. Does anyone have any advice or information for me.

>

> Thanks so much,

> Rene

>

> __________________________________________________________

> AOL now offers free email to everyone. Find out more about what's free

> from AOL at AOL.com.

>

>

[Guest guest]

You would think the MDA wouldn't care as long as the money they gave

went to help a MD patient. I think they are saying that this is

something you normally have to pay anyway and paying it could benefit

every other member on this ins. by way of you not having to pay the

deduct if you go have sugery or anything really. I hope they are able

to help you.

>

> Sometimes the situation is only a problem because it is looked at

in a certain way. Looked at in another way, the right course of

action may be so obvious that the problem no longer exists.

>

> de Bono

>

>

>

> wheelchair

>

>

> Hi, my name is Rene and I live in the Austin area and I have a son,

> Jake, who has SMA III. We went to his doctor in Dallas on the 2nd

of

> April and they wrote him a prescription for SMO's and a wheelchair.

> The wheelchair is going to cost more than 2000. The problem is our

> insurance has a yearly deductible of 2500 and so far we've met 1000

of

> it. Once we meet the deductible our insurance covers at 100%. I

> contacted the MDA and found out that you are elgible for 2000

dollars

> towards either one or the other. They told me they weren't sure it

> he'd get the help because they usually let the insurance cover

first

> and then MDA would cover what was left up to 2000 but because the $

> was going towards the deductible before the insurance has covered

> anything they weren't sure. I'm nervous to think that he might be

> denied help. Does anyone have any advice or information for me.

>

> Thanks so much,

> Rene

>

>

>

>

______________________________________________________________________

__

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

>

>

[Guest guest]

Yeah, I saw it from that perspective too. the bottom line is to

help Jake. That's how I look at it anyway. It wouldn't even be the

full 2000 since a portion has already been met. Well thanks for the

input:)

>

> You would think the MDA wouldn't care as long as the money they

gave

> went to help a MD patient. I think they are saying that this is

> something you normally have to pay anyway and paying it could

benefit

> every other member on this ins. by way of you not having to pay

the

> deduct if you go have sugery or anything really. I hope they are

able

> to help you.

>

>

> >

> > Sometimes the situation is only a problem because it is looked

at

> in a certain way. Looked at in another way, the right course of

> action may be so obvious that the problem no longer exists.

> >

> > de Bono

> >

> >

> >

> > wheelchair

> >

> >

> > Hi, my name is Rene and I live in the Austin area and I have a

son,

> > Jake, who has SMA III. We went to his doctor in Dallas on the

2nd

> of

> > April and they wrote him a prescription for SMO's and a

wheelchair.

> > The wheelchair is going to cost more than 2000. The problem is

our

> > insurance has a yearly deductible of 2500 and so far we've met

1000

> of

> > it. Once we meet the deductible our insurance covers at 100%. I

> > contacted the MDA and found out that you are elgible for 2000

> dollars

> > towards either one or the other. They told me they weren't sure

it

> > he'd get the help because they usually let the insurance cover

> first

> > and then MDA would cover what was left up to 2000 but because

the $

> > was going towards the deductible before the insurance has

covered

> > anything they weren't sure. I'm nervous to think that he might

be

> > denied help. Does anyone have any advice or information for me.

> >

> > Thanks so much,

> > Rene

> >

> >

> >

> >

>

_____________________________________________________________________

_

> __

> > AOL now offers free email to everyone. Find out more about

what's

> free from AOL at AOL.com.

> >

> >

> >

[Guest guest]

Some people have no insurance at all so I think MDA puts them as a priority and

that is why they want people to use their insurance first. If insurance doesn't

cover, they are happy to help.

Terry W <tntw6@...> wrote:

You would think the MDA wouldn't care as long as the money they gave

went to help a MD patient. I think they are saying that this is

something you normally have to pay anyway and paying it could benefit

every other member on this ins. by way of you not having to pay the

deduct if you go have sugery or anything really. I hope they are able

to help you.

>

> Sometimes the situation is only a problem because it is looked at

in a certain way. Looked at in another way, the right course of

action may be so obvious that the problem no longer exists.

>

> de Bono

>

>

>

> wheelchair

>

>

> Hi, my name is Rene and I live in the Austin area and I have a son,

> Jake, who has SMA III. We went to his doctor in Dallas on the 2nd

of

> April and they wrote him a prescription for SMO's and a wheelchair.

> The wheelchair is going to cost more than 2000. The problem is our

> insurance has a yearly deductible of 2500 and so far we've met 1000

of

> it. Once we meet the deductible our insurance covers at 100%. I

> contacted the MDA and found out that you are elgible for 2000

dollars

> towards either one or the other. They told me they weren't sure it

> he'd get the help because they usually let the insurance cover

first

> and then MDA would cover what was left up to 2000 but because the $

> was going towards the deductible before the insurance has covered

> anything they weren't sure. I'm nervous to think that he might be

> denied help. Does anyone have any advice or information for me.

>

> Thanks so much,

> Rene

>

>

>

>

______________________________________________________________________

__

> AOL now offers free email to everyone. Find out more about what's

free from AOL at AOL.com.

>

>

>

[Guest guest]

Hi Rene, Maybe I was given incorrect information from our local MDA clinic, but

it is my understanding the $2,000 was to be used for ANY out of pocket expsenses

for wheelchair or orthotics. Anything insurance didn't pay -- deductible or co

insurance. Since Jack's cough assist ended hitting the deductable, his chair

will cost us $300 (10% co insurance), so we won't be using the MDA money. Our

reasoning is that somewhere else down the line a chair might end up costing us a

lot more out of pocket than $300. Next time I talk to our clinic I will ask

them to clarify this. I hope I wasn't told wrong.

Good luck!

Becky

Jack, type III

twin sister Delaney and big sister Ava

[Guest guest]

Its 2k per person, insurance or not. The maney they get is donated

mostly, for anyone with MD so it goes to anyone. I hope they help you

out.

Terry

> You would think the MDA wouldn't care as long as the money they

gave

> went to help a MD patient. I think they are saying that this is

> something you normally have to pay anyway and paying it could

benefit

> every other member on this ins. by way of you not having to pay the

> deduct if you go have sugery or anything really. I hope they are

able

> to help you.

>

>

> >

> > Sometimes the situation is only a problem because it is looked at

> in a certain way. Looked at in another way, the right course of

> action may be so obvious that the problem no longer exists.

> >

> > de Bono

> >

> >

> >

> > wheelchair

> >

> >

> > Hi, my name is Rene and I live in the Austin area and I have a

son,

> > Jake, who has SMA III. We went to his doctor in Dallas on the 2nd

> of

> > April and they wrote him a prescription for SMO's and a

wheelchair.

> > The wheelchair is going to cost more than 2000. The problem is

our

> > insurance has a yearly deductible of 2500 and so far we've met

1000

> of

> > it. Once we meet the deductible our insurance covers at 100%. I

> > contacted the MDA and found out that you are elgible for 2000

> dollars

> > towards either one or the other. They told me they weren't sure

it

> > he'd get the help because they usually let the insurance cover

> first

> > and then MDA would cover what was left up to 2000 but because the

$

> > was going towards the deductible before the insurance has covered

> > anything they weren't sure. I'm nervous to think that he might be

> > denied help. Does anyone have any advice or information for me.

> >

> > Thanks so much,

> > Rene

> >

> >

> >

> >

>

______________________________________________________________________

> __

> > AOL now offers free email to everyone. Find out more about what's

> free from AOL at AOL.com.

> >

> >

> >

[Guest guest]

The theory behind insurance deductibles is so that you always have

to pay a little bit for medical service, and therefore may be more

prudent about using medical treatments. The insurance companies

theorize that if all medical service was completely free, then

people would go hog wild and get anything they wanted even if they

don't really need it. If you always have to pay something, but not

enough to be a big burden, then supposedly you will be more

responsible about the services you use.

It used to be that a visit to the MDA clinic was completely free

because the MDA covered any expenses your insurance company didn't,

including deductibles. But, the insurance companies forced the MDA

to change so they wouldn't cover deductibles anymore. Insurance

companies want you to feel a little financial " bite " whenever you go

to the doctor just so you may be less likely to go unless you really

need it.

However, my family's experience has been that most DME vendors can

get around this by billing the insurance company first and telling

them we will pay the deductible. Once insurance pays their portion,

the vendor will bill MDA up to $2,000. The local MDA office usually

doesn't care about insurance company rules and they will simply pay

the vendor. Then, if there is any balance still outstanding, you

can use other charities (Kiwanis, Wheels for Kids, etc.), but you

have to keep it secret that the MDA chipped in any amount. Most

charities want to deduct from their contribution any amount

contributed by another charity.

I hope that helps.

>

> Hi, my name is Rene and I live in the Austin area and I have a

son,

> Jake, who has SMA III. We went to his doctor in Dallas on the 2nd

of

> April and they wrote him a prescription for SMO's and a

wheelchair.

> The wheelchair is going to cost more than 2000. The problem is our

> insurance has a yearly deductible of 2500 and so far we've met

1000 of

> it. Once we meet the deductible our insurance covers at 100%. I

> contacted the MDA and found out that you are elgible for 2000

dollars

> towards either one or the other. They told me they weren't sure

it

> he'd get the help because they usually let the insurance cover

first

> and then MDA would cover what was left up to 2000 but because the

$

> was going towards the deductible before the insurance has covered

> anything they weren't sure. I'm nervous to think that he might be

> denied help. Does anyone have any advice or information for me.

>

> Thanks so much,

> Rene

>

[Guest guest]

I was wondering if anyone knew where I could find a CHEAP peds wheelchair. My

daughter has pauciarticular jra in her knee. She is having a really bad flare

up. She is having problems getting around and has to use crutches. The problem

is her school would rather her use a wheelchair. I'm not sure their reasoning

but she seems to think it would be easier to carry stuff and get around. Please

let me know if you know where I could find one.

Nicki

Gabby 7 (pauci. Knee & hand)

Dessie 4 (pauci. ankle)

[Guest guest]

I am pretty sure if the school is recommending she use a wheelchair, they should

be providing it.  Of course then you get into the whose is it discussion for

weekends, holidays, etc. 

Just about every state  in the US (I shouldn't assume that is where you are

from, I guess),  has an Assistive Technology program, some states have equipment

loan programs, some have recycling programs.  Do a search for Durable Medical

Equipment, wheelchairs, equipment recycling or resale for your state or

surounding area and you may be surprised to find something. 

Also w/c vendors, medical supply often know of families looking to get rid of

equipment, or know of regional sales reps who have floor models that need to be

sold, it is worth calling them for that. 

Good luck, there are a lot of websites with wheelchairs also, just make sure

that the one you get has a set of large wheels that she can reach, alot of

lightweight travel wheelchairs now have 4 tiny wheels  so the person riding

can't self propel or steer with their hands. 

Good Luck, and Jana 5 y.o. systemic JRA

From: nicolestiltner <nicolestiltner@...>

Subject: Wheelchair

Date: Wednesday, April 1, 2009, 10:23 PM

I was wondering if anyone knew where I could find a CHEAP peds wheelchair. My

daughter has pauciarticular jra in her knee. She is having a really bad flare

up. She is having problems getting around and has to use crutches. The problem

is her school would rather her use a wheelchair. I'm not sure their reasoning

but she seems to think it would be easier to carry stuff and get around. Please

let me know if you know where I could find one.

Nicki

Gabby 7 (pauci. Knee & hand)

Dessie 4 (pauci. ankle)

[Guest guest]

Likely they want her to use a wheelchair because of libility feeling it's

better/safer than crutches....

gee.. i dont get how places can tell you WHat to use but than again since

she is little.. i suppose it's somewhat logical.

It would worry me with them providing one unless they truly got one for her

that is proper.. that is with a good cushion that will take pressure off of

her joints and not some old iron dinosaur that can lead to greater

stiffness/flare in the joints......

Insurance can pay but it can be a REAL pain to get Durable medical

Equipment. I'm dealing with a place called Preferred Homecare or is

Healthcare. They are AWESOME. They have a whole entire form they use for

measurement and they have the person visit a OT and or PT specialist that

does this kind of fitting as well to meet the needs of a client. They do all

of this and than submit it to the insurance for approval so I would suggest

looking them up and seeing if they are in your area as they are in a few

different states. Other places should work in a similar way. You should

avoid places that dont because I got messed up with getting my first power

chair that way before. They didnt do it properly and I got something that

caused me more pain in the end... =/ I also had problems with a vendor that

had a PT working for htem.. they were not helpful either. However the rehab

specialist at Prefered homecare/healthcare is putting a new rigid removable

back on my wheelchair and ordering me a new cushion and she showed me all of

the things that they normally do and it's really amazing.

Anyways, just make sure that if the school does provide the chair, that it's

not going to be something that increases your daughters pain and issues. I

have used a older manual chair before and it caused major flares in the

back, hips and not to mention hands from pushing but now I have a light

weight 23 or25 pound purple wheelchair with pneumatic street tires that

rolls with ease along with a seat cushon made to take pressure off of my

tail bone and thats all about to be improved more.

Sometimes on cragislist, I see people salling old pediatric wheelchairs and

disabled kids strollers for bigger kids once in a long while when their kids

have outgrown them which can sometimes be useful but I rarely see that. Also

ebay too but that has its own pros and cons.

If your insurance will pay for it, one of the best pediatric chair companies

out there is Quickie who makes Zippie chairs for kids and they are growable

and made just for their size. posture, etc etc etc...

Issadora

On Wed, Apr 1, 2009 at 7:57 PM, Farrington <lesliesufarr@...>wrote:

> I am pretty sure if the school is recommending she use a wheelchair,

> they should be providing it. Of course then you get into the whose is it

> discussion for weekends, holidays, etc.

> Just about every state in the US (I shouldn't assume that is where you are

> from, I guess), has an Assistive Technology program, some states have

> equipment loan programs, some have recycling programs. Do a search for

> Durable Medical Equipment, wheelchairs, equipment recycling or resale for

> your state or surounding area and you may be surprised to find something.

> Also w/c vendors, medical supply often know of families looking to get rid

> of equipment, or know of regional sales reps who have floor models that need

> to be sold, it is worth calling them for that.

> Good luck, there are a lot of websites with wheelchairs also, just make

> sure that the one you get has a set of large wheels that she can reach, alot

> of lightweight travel wheelchairs now have 4 tiny wheels so the person

> riding can't self propel or steer with their hands.

> Good Luck, and Jana 5 y.o. systemic JRA

>

>

>

> From: nicolestiltner <nicolestiltner@...<nicolestiltner%40>

> >

> Subject: Wheelchair

> < %40>

> Date: Wednesday, April 1, 2009, 10:23 PM

>

>

> I was wondering if anyone knew where I could find a CHEAP peds wheelchair.

> My daughter has pauciarticular jra in her knee. She is having a really bad

> flare up. She is having problems getting around and has to use crutches. The

> problem is her school would rather her use a wheelchair. I'm not sure their

> reasoning but she seems to think it would be easier to carry stuff and get

> around. Please let me know if you know where I could find one.

>

> Nicki

> Gabby 7 (pauci. Knee & hand)

> Dessie 4 (pauci. ankle)

>

>

[Guest guest]

Hi Nicki,

Since the School said it would be easier/ Better for her to use a

Wheelchair. I would contact the Dr and let him or her know about this. If

Insurance

is paying for it then the Dr would have to write a Prescrption for you to

get one through Insurance. Most Children's Hospitals have a Social Services

which help you with the Information and getting to the right place for a

Wheelchair. You can also look around in the Phone book for Children's

Advocates as

they know about help for Children. Also contact your Local Arthritis

Foundation as they may have some in storage. Shop around Thrift stores and Flea

Markets as well.

Since the School has sources You may want to contact the District and ask

about Wheelchairs as when a Person uses them and do not need them anymore or

grows out of it they either donate them or sell them. Also check with

Churches as some do donate to Churches, As with any Medical equipt. They are in

good shape and can be reused.like a wheelchair.

When my daughter was in a wheelchair and in school. It made a big

difference for her getting around the school. I am not sure what State you are

in so

I can not tell you which way to go as to what place to call. If you say what

state you are in some of the groups may know which place that would be best

to help. Contact the Dr first though as He or She will have to write out a

Prescription to help you though. Heck maybe he may know where you can go to get

one other than through Insurance. I know here we donate wheelchairs to those

who need them or to the Drs. My Mother in law had one and when she passed

away. I donated it to the Local Grocery Store to help others in the

neighborhood to shop. This was wayyyyyyyy before the Store scooters came along.

Robbin

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[Guest guest]

Have to say I agree with e on getting the meds readjusted, or

trying something new. Plus with arthritis in her hands, I would think

crutches are not great for that for any length of time. Before you go

the wheelchair route, maybe call the dr and see what he/she could

recommend.

If a chair is necessary, couldn't the school help locate one free or for

lower cost? Just a thought, Michele ( 21, spondy)

________________________________

From: [mailto: ] On

Behalf Of bound for london

Sent: Wednesday, April 01, 2009 9:43 PM

Subject: Re: Wheelchair

If you have medical insurance consult with them. They have agreements

with providers of Durable Medical Equipment to keep the cost low. My big

concern is the need for the wheelchair. My daughter has used one but we

then amped up all her meds to get the flare under control. I'm not

saying that you can always prevent the use of a wheelchair but the need

to get the flare under control to prevent permanent joint damage. Is she

on a biologic, done joint injections, etc? Also if she needs a

wheelchair the DME can get the correct one, with the correct adaptations

that fit her best. Depending on her size it can make all the difference.

e, mom to 'joe' 22 poly/lupus

[Guest guest]

Thank you all for your responces.Let me clear a few things up. My daughter is on

methotrexate and motrin. We go back to the doctor this coming wednesday 4/8/09.

She has had her knee drained and injected before and we anticipate that

happening again this time.

I don't know what your rheumes tell you but mine keeps stressing mobility but

right now my daughter can't even walk without assistants. I'm afraid that he

would not right a prescription for a wheelchair. He really didn't even want me

to take her out of gym during this flare up but I couldn't ask a child who can

barley walk to try to participate in gym.

We don't like her having to use the crutches because they are so uncomfortable

and we do worry about it flaring up her hand or worse her falling and hurting

herself. Plus she does not like having to rely on everyone else to do things

like carry her books, lunch tray and open doors for her.

The school will profide an adult wheelchair but it is HUGE and doesn't roll

well. It doesn't free her up to be self relient. I don't blame the school for

asking us to do the wheelchair. They have went out of their way to be helpful

with my daughters.

Also I live in Virginia. Sorry I didn't post that to begin with it kinda slipped

my mind.

Nicki

Gabby 7 (pauci. knee and hand)

Dessie 4 (pauci. ankle)

>

> Hi Nicki,

> Since the School said it would be easier/ Better for her to use a

> Wheelchair. I would contact the Dr and let him or her know about this. If

Insurance

> is paying for it then the Dr would have to write a Prescrption for you to

> get one through Insurance. Most Children's Hospitals have a Social Services

> which help you with the Information and getting to the right place for a

> Wheelchair. You can also look around in the Phone book for Children's

Advocates as

> they know about help for Children. Also contact your Local Arthritis

> Foundation as they may have some in storage. Shop around Thrift stores and

Flea

> Markets as well.

> Since the School has sources You may want to contact the District and ask

> about Wheelchairs as when a Person uses them and do not need them anymore or

> grows out of it they either donate them or sell them. Also check with

> Churches as some do donate to Churches, As with any Medical equipt. They are

in

> good shape and can be reused.like a wheelchair.

> When my daughter was in a wheelchair and in school. It made a big

> difference for her getting around the school. I am not sure what State you

are in so

> I can not tell you which way to go as to what place to call. If you say what

> state you are in some of the groups may know which place that would be best

> to help. Contact the Dr first though as He or She will have to write out a

> Prescription to help you though. Heck maybe he may know where you can go to

get

> one other than through Insurance. I know here we donate wheelchairs to those

> who need them or to the Drs. My Mother in law had one and when she passed

> away. I donated it to the Local Grocery Store to help others in the

> neighborhood to shop. This was wayyyyyyyy before the Store scooters came

along.

> Robbin

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[Guest guest]

It is so great the rheumy stresses mobility. You are right, during a flare they

do sometimes need to slow down and take it easy. The wheelchair will make it

easy to get around school and deal with the day to day when she is flaring. Glad

you’re next appt is soon and I hope the dr can provide that relief she needs.

Sorry if my last post sounded like you weren’t doing the right things, of

course you are. I thought of that after I reread what I posted. Sometimes the

meaning gets lost in the post. Sorry about that! Michele ( 21, spondy)

________________________________

From: [mailto: ] On Behalf Of

nicolestiltner

Sent: Thursday, April 02, 2009 10:45 AM

Subject: Re: Wheelchair

Thank you all for your responces.Let me clear a few things up. My daughter is on

methotrexate and motrin. We go back to the doctor this coming wednesday 4/8/09.

She has had her knee drained and injected before and we anticipate that

happening again this time.

I don't know what your rheumes tell you but mine keeps stressing mobility but

right now my daughter can't even walk without assistants. I'm afraid that he

would not right a prescription for a wheelchair. He really didn't even want me

to take her out of gym during this flare up but I couldn't ask a child who can

barley walk to try to participate in gym.

We don't like her having to use the crutches because they are so uncomfortable

and we do worry about it flaring up her hand or worse her falling and hurting

herself. Plus she does not like having to rely on everyone else to do things

like carry her books, lunch tray and open doors for her.

The school will profide an adult wheelchair but it is HUGE and doesn't roll

well. It doesn't free her up to be self relient. I don't blame the school for

asking us to do the wheelchair. They have went out of their way to be helpful

with my daughters.

Also I live in Virginia. Sorry I didn't post that to begin with it kinda slipped

my mind.

Nicki

Gabby 7 (pauci. knee and hand)

Dessie 4 (pauci. ankle)

>

> Hi Nicki,

> Since the School said it would be easier/ Better for her to use a

> Wheelchair. I would contact the Dr and let him or her know about this. If

Insurance

> is paying for it then the Dr would have to write a Prescrption for you to

> get one through Insurance. Most Children's Hospitals have a Social Services

> which help you with the Information and getting to the right place for a

> Wheelchair. You can also look around in the Phone book for Children's

Advocates as

> they know about help for Children. Also contact your Local Arthritis

> Foundation as they may have some in storage. Shop around Thrift stores and

Flea

> Markets as well.

> Since the School has sources You may want to contact the District and ask

> about Wheelchairs as when a Person uses them and do not need them anymore or

> grows out of it they either donate them or sell them. Also check with

> Churches as some do donate to Churches, As with any Medical equipt. They are

in

> good shape and can be reused.like a wheelchair.

> When my daughter was in a wheelchair and in school. It made a big

> difference for her getting around the school. I am not sure what State you are

in so

> I can not tell you which way to go as to what place to call. If you say what

> state you are in some of the groups may know which place that would be best

> to help. Contact the Dr first though as He or She will have to write out a

> Prescription to help you though. Heck maybe he may know where you can go to

get

> one other than through Insurance. I know here we donate wheelchairs to those

> who need them or to the Drs. My Mother in law had one and when she passed

> away. I donated it to the Local Grocery Store to help others in the

> neighborhood to shop. This was wayyyyyyyy before the Store scooters came

along.

> Robbin

> **************New Low Prices on Dell Laptops †" Starting at $399

>

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[Guest guest]

Probably aslo you need to address that your doctor needs to change her

current medicines...It looks like that you are daughter is not getting a much

relief from her currect meds.  My daugher were in the same situation and as

soon as we changed her meds , we noticed a huge difference.  It could be a very

hard emotionnally to go to the next level of drugs ( Kineret or Enbrel,

humira), but it worths to try to get the relieve and mobilty. 

________________________________

From: " Tepper, Michele " <MTepper@...>

Sent: Thursday, April 2, 2009 12:07:42 PM

Subject: RE: Wheelchair

It is so great the rheumy stresses mobility. You are right, during a flare they

do sometimes need to slow down and take it easy. The wheelchair will make it

easy to get around school and deal with the day to day when she is flaring. Glad

you’re next appt is soon and I hope the dr can provide that relief she needs.

Sorry if my last post sounded like you weren’t doing the right things, of

course you are. I thought of that after I reread what I posted. Sometimes the

meaning gets lost in the post. Sorry about that! Michele ( 21, spondy)

____________ _________ _________ __

From: @group s.com [mailto: @group s.com] On Behalf Of

nicolestiltner

Sent: Thursday, April 02, 2009 10:45 AM

@group s.com

Subject: Re: Wheelchair

Thank you all for your responces.Let me clear a few things up. My daughter is on

methotrexate and motrin. We go back to the doctor this coming wednesday 4/8/09.

She has had her knee drained and injected before and we anticipate that

happening again this time.

I don't know what your rheumes tell you but mine keeps stressing mobility but

right now my daughter can't even walk without assistants. I'm afraid that he

would not right a prescription for a wheelchair. He really didn't even want me

to take her out of gym during this flare up but I couldn't ask a child who can

barley walk to try to participate in gym.

We don't like her having to use the crutches because they are so uncomfortable

and we do worry about it flaring up her hand or worse her falling and hurting

herself. Plus she does not like having to rely on everyone else to do things

like carry her books, lunch tray and open doors for her.

The school will profide an adult wheelchair but it is HUGE and doesn't roll

well. It doesn't free her up to be self relient. I don't blame the school for

asking us to do the wheelchair. They have went out of their way to be helpful

with my daughters.

Also I live in Virginia. Sorry I didn't post that to begin with it kinda slipped

my mind.

Nicki

Gabby 7 (pauci. knee and hand)

Dessie 4 (pauci. ankle)

>

> Hi Nicki,

> Since the School said it would be easier/ Better for her to use a

> Wheelchair. I would contact the Dr and let him or her know about this. If

Insurance

> is paying for it then the Dr would have to write a Prescrption for you to

> get one through Insurance. Most Children's Hospitals have a Social Services

> which help you with the Information and getting to the right place for a

> Wheelchair. You can also look around in the Phone book for Children's

Advocates as

> they know about help for Children. Also contact your Local Arthritis

> Foundation as they may have some in storage. Shop around Thrift stores and

Flea

> Markets as well.

> Since the School has sources You may want to contact the District and ask

> about Wheelchairs as when a Person uses them and do not need them anymore or

> grows out of it they either donate them or sell them. Also check with

> Churches as some do donate to Churches, As with any Medical equipt. They are

in

> good shape and can be reused.like a wheelchair.

> When my daughter was in a wheelchair and in school. It made a big

> difference for her getting around the school. I am not sure what State you are

in so

> I can not tell you which way to go as to what place to call. If you say what

> state you are in some of the groups may know which place that would be best

> to help. Contact the Dr first though as He or She will have to write out a

> Prescription to help you though. Heck maybe he may know where you can go to

get

> one other than through Insurance. I know here we donate wheelchairs to those

> who need them or to the Drs. My Mother in law had one and when she passed

> away. I donated it to the Local Grocery Store to help others in the

> neighborhood to shop. This was wayyyyyyyy before the Store scooters came

along.

> Robbin

> ************ **New Low Prices on Dell Laptops †" Starting at $399

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