Wheelchair

[Guest guest]

Hi fellow ers,

I visited my doctor today and requested that I be assesed for a light weight

travelling wheelchair, he was more than pleased with me that I had taken

this option to make life easier. I told him that my desicion was made easier

because I am learning so much from my fellow CMTers who are more than

willing to share the experiences with other people like myself.

I would just like to thank you all for being there and being so supportive.

P.

[Guest guest]

that's wonderful news. I found it a relief to go into a wheelchair because

I could walk again without pain.

We were going to Paris back in 99 and both Dave and I knew that there was no way

I could around but neither of us wanted to say anything. In the end I think we

both blurted it together and as a result of admitting I couldn't walk we all had

a fantastic holiday.

I've just been out today on my new diddy scooter which lives in the back of my

car - it was wonderful. I walked alongside my son and was in total control of

which direction I was going in.

I'm now a fully mobile, independent cool chick!

Love

Sue

The important thing is never to stop questioning.

Website www.horder-mason.freeserve.co.uk

Freelance Writer and CMTer

" I Thank God for my handicaps, for through them, I have found myself, my work,

and my God. " - Helen Keller

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

From: benpalombo@...

Sent: Thursday, November 01, 2001 2:28 PM

Subject: [] Wheelchair

Hi fellow ers,

I visited my doctor today and requested that I be assesed for a light weight

travelling wheelchair, he was more than pleased with me that I had taken

this option to make life easier. I told him that my desicion was made easier

because I am learning so much from my fellow CMTers who are more than

willing to share the experiences with other people like myself.

I would just like to thank you all for being there and being so supportive.

P.

[Guest guest]

Hi ,

I applaud your ability to use the wheel chair! I have struggled with

CMT for 30 years, and in the last couple years really started loosing

the battle. But I simply can't get into the wheel chair, at first it

was because I knew I still had the ability to walk albeit one step

forward two steps sideways or backwards. For the last year it's been

nearly impossible for me to walk very far or stand very long, I am

rather like a bowling pin, in that I seem to want to fall in any

direction.

I have done a lot of soul searching about " Why " I am so reluctant to

use a wheel chair, I have never looked down on anyone in a chair, and

certainly NEVER made fun of anyone in one. But it's like I am ashamed

to sit in one, or be seen in one, particularly by one of my old

friends. I have always been very active, and enjoyed everything in my

world, I have the best family in the cosmos, my parents, wife,

daughters everyone gives me terrific support in anything I do, but

still I cannot get in that darned chair preferring to stay home rather

than go somewhere that I would have to use the wheel chair.

I guess I'm writing this to tell you, that you and people like you

inspire me, I look up to you, perhaps for your courage, or for your

willingness to not let anything stop you from living life to it's

fullest. I think when I finally do go to a function in my chair it

will be because of people like you.

Thanks to you and all the 'er, you all know how every CMT'er

feels, and are able to share your feelings candidly and with out

embarrassment. God Bless you all.

Dave Corder

> Hi fellow ers,

>

> I visited my doctor today and requested that I be assesed for a

light weight

> travelling wheelchair, he was more than pleased with me that I had

taken

> this option to make life easier. I told him that my desicion was

made easier

> because I am learning so much from my fellow CMTers who are more

than

> willing to share the experiences with other people like myself.

>

> I would just like to thank you all for being there and being so

supportive.

>

> P.

[Guest guest]

I had the same problem with using a wheelchair. Until my Grandson wanted me

to go to his football game I was going to have to walk 30 to 40 yards and

knew I couldn't do it so out came the chair then it was a heavy one 65lbs.

Now I use my light wieght one as much as needed something will happen for

you to give in then you won't know why you never used it before its like

instant freedom. Almost as much freedom as I got with the hand controls to my

car can't drive without them same with walking.

[Guest guest]

Dave,

Hi, I am . After reading your post, I feel I have to write you

and tell you about an incident this past weekend. I was at an event here in

Delaware called the Pumpkin Chunk.

Our team, The Universal Soldier got 2nd place with a 3718' shot. After the

competition we gave it more air and did a fun shot and we know we would have

beat them with it, (they only won by 190') but out of the fear of having

pumpkin pie and no place he made his decision. Look what it was based on. And

then after the competition to have a winning shot, but it not counting the

team was still ecstatic. They were not upset that we did not get 1st place,

all they cared about was that they got the shot off without blowing it up. If

he had done the air like he wanted to and not listen to his fear, he would

have been 1st. I have lived a life of fear for many different reasons and let

me tell you, even though I have had a crazy fun filled life and plan to

continue the same I just have to do things differently and there are no

things that I will miss, at least not out of fear.

The way it is going, I may be taking a wheel chair there in a few years. My

friends wanted me to come like I always have and they had me set up for total

comfort and I ended up taking 2 hours of video and 12 disc of pictures. If I

had listened to my fears, I would not have gone. I have gained 40+ pounds

since I saw these people last year, I walk funny and I could not run around

like I used to. I used to help my girlfriend do all the cooking and we took

care of so many different things. It is her husband's chunker.

I am worn out and almost everything hurts, but I had fun, my awkwardness was

not brought up in any way that made me uncomfortable and the guys were

teasing me saying the could catch me now! The ladies were more than helpful

and treated me with love and friendship. We need these things to keep our

minds and hearts open to life, however we may have to address it. I am so

glad I didn't listen to that little voice that cripples the heart and the

mind and listen to the voice that said enjoy today, enjoy this hour, enjoy

this minute. The Lord gave us beautiful weather, (which is the one thing that

may have stopped me) great friends, the food was out of this world and I now

have the security within me that I am no longer afraid to walk funny in front

of anyone and when the time does come that I need a chair, I will be cruising

and having fun with it. Our team is consistent of 35-40 people and we have

another 35 or so people that buy pit passes and stop into visit over the two

days. They probably had 25 to 30 thousand people. The money goes to

different charities and is run like tip top by a few good honest people.

I saw a gentleman in a wheel chair that was electric. We pulled up on a golf

cart (it is a huge event and I cant walk far before cramping and zinging

starts so they supplied with a golf cart whenever I felt like it). We stopped

and talk for a while and he told me he broke his neck, he was having a blast

using one hand in a brace to mobilize himself. We raced the cart and wheel

chair for the kids and we had fun. We have memories and that is the one thing

that can never be taken from us.

I was able to go out in the crowd and see the bands and vendors, games and

rides, food and candy, raffles, etc. I hope that you can look in the mirror

and realize that none of those fears will get you, unless you let them.

God Bless,

[Guest guest]

Tracie,

If you get them to pay for a standard wheelchair, you may have problems

getting a scooter later. My insurer told me that the scooter was " in lieu " of a

wheelchair. If you have 100% coverage for a motorized scooter, take it! There

are models that fold easily to go into the trunk of a car -- you may not be able

to fold and lift it but a family member can, my 10-year-old was able to do it.

You need to think about whether you need it primarily for indoor or outdoor use,

or a combination -- there is a tradeoff between durability and range vs.

portability and tight turning radius. The smallest ones fit in a compact car,

and all the folding ones will fit in a station wagon or minivan.

__________________________________________________

[Guest guest]

Great news, Nina!

in Texas

Nina <ncampbell@...> wrote:

My electric wheelchair has been built and is ready to be delivered.

Hubby and I will wait and pick it up Friday because he didn't get my

ramp finished yet. Found out they don't turn it in to Medicare and

insurance until I pick it up. I'm guessing they think it will be

approved or they wouldn't have built it because I told them I did not

have the money to pay for it myself. I'm changing insurance companies

at the end of the month, but as long as they turn it in to them before

the end of the month, the insurance company has to pay. So as of Friday

I will be able to get around in the house and outside without my back

screaming. Oh, happy days! Now will have to start saving for a lift so

I can go places, like to warm water exercise, something I couldn't do

before because walking through the parking lot, hospital, etc. was too

much for these fractured vertebrae to handle. And when both knees and

hands aren't working due to RA, I'll still be able to get around.

Nina

[Guest guest]

That's great news Nina, you will be buzzing around in not time.

Joy

Nina <ncampbell@...> wrote:

My electric wheelchair has been built and is ready to be delivered.

Hubby and I will wait and pick it up Friday because he didn't get my

ramp finished yet. Found out they don't turn it in to Medicare and

insurance until I pick it up. I'm guessing they think it will be

approved or they wouldn't have built it because I told them I did not

have the money to pay for it myself. I'm changing insurance companies

at the end of the month, but as long as they turn it in to them before

the end of the month, the insurance company has to pay. So as of Friday

I will be able to get around in the house and outside without my back

screaming. Oh, happy days! Now will have to start saving for a lift so

I can go places, like to warm water exercise, something I couldn't do

before because walking through the parking lot, hospital, etc. was too

much for these fractured vertebrae to handle. And when both knees and

hands aren't working due to RA, I'll still be able to get around.

Nina

[Guest guest]

I am so happy for you. Isn't it wonderful to be living in this high tech

era......

Nina <ncampbell@...> wrote: My electric wheelchair has

been built and is ready to be delivered.

Hubby and I will wait and pick it up Friday because he didn't get my

ramp finished yet. Found out they don't turn it in to Medicare and

insurance until I pick it up. I'm guessing they think it will be

approved or they wouldn't have built it because I told them I did not

have the money to pay for it myself. I'm changing insurance companies

at the end of the month, but as long as they turn it in to them before

the end of the month, the insurance company has to pay. So as of Friday

I will be able to get around in the house and outside without my back

screaming. Oh, happy days! Now will have to start saving for a lift so

I can go places, like to warm water exercise, something I couldn't do

before because walking through the parking lot, hospital, etc. was too

much for these fractured vertebrae to handle. And when both knees and

hands aren't working due to RA, I'll still be able to get around.

Nina

Raniolo

[Guest guest]

Great news Nina, Tawny

[Guest guest]

Nina: Please make sure the people who have the

emergency service have your right contact phone

numbers. I have an elderly aunt who recently fell in

her kitchen and could not get up. Her oldest daughter

was her contact number, my aunt pressed the button and

thought help would come. The emergency service had the

wrong phone number for her daughter. Luckily my aunt

had given the phone number of my sister as a back up.

My sister was able to send her daughter-in-law over to

help my aunt. But there was a problem, my aunt's

son-in-law had installed a new lock on my aunt's front

door. No one could get in with a key. Luckily my aunt

was able to drag herself over to a cabinet in the

kitchen to get the automatic garage door opener and

open the garage door. My aunt has had this service for

several years and had not had to use them before. We

found out the hard way to check and make sure these

response people have the right phone numbers if

needed.

Lupy_Fib

________________________________________________________________________________\

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[Guest guest]

Talking about wheelchairs. Does anyone have an idea about what kind to buy for a

person who can only walk short distances with a walker but needs a wheelchair

for longer jaunts. I want one that can be self propelled and also can be used to

push some one in. But light enough to lift into a trunk of a car for some.

One who is transporting a person from one place to another?

Barb

[Guest guest]

Barb:

There are lot of wheelchair sites online to pick from...including Improve Life

and 1-800-Wheelchair. It also depends on your needs too, like how much you are

willing to spend. I would also make sure your speak with the physical therapist

to make sure you are buying the right chair too.

Marin

[Guest guest]

I didn't want to see myself in a wheelchair. I think most or all feel the same

way! But with CMT s*** happens and never know when, or if! We are all effected

differently.

Geri

[Guest guest]

I don't know why some people look at a wheel chairs so negatively?

I had someone once tell me to fight this so I wouldn't end up in a chair. Like a

WC is the end of the world. Its not like I would have murdered someone. Its only

a chair. I just don't get it. Some people need WCs - its not a crime. If

fighting a disease was a cure we would all be CMT free.

[Guest guest]

I've sometimes heard the phrase " confined to a wheelchair " , but now that I'm

using one, I think the phrase should be " liberated by a wheelchair " . I can still

walk, but walking more than a few blocks is extremely painful. and using my

chair means I can avoid that pain and do my shopping without complete

exhaustion. And if my muscles continue to atrophy (which is likely) & I need the

chair more, I'll be prepared. What do you other " wheelies " think?

BTW, I'm going to talk to my podiatrist later this week, to discuss whether

getting custom made shoes might allow me to walk longer. Thanks to all of you

who responded to my question about custom shoes.

Ruth

[Guest guest]

I agree Ruth,

The WC gives a lot of people a life that other wise they wouldn't have. One of

my best friends is in a WC. She can't walk and without her chair she wouldn't be

able to go anywhere or do anything but sit and lay down.

In a message dated 8/19/2009 9:01:52 A.M. Pacific Daylight Time,

rulev@... writes:

I've sometimes heard the phrase " confined to a wheelchair " , but now that I'm

using one, I think the phrase should be " liberated by a wheelchair " .

[Guest guest]

Hi Ruth,

What an outstanding attitude on " liberation by a wheelchair " . That is one of the

most positive thoughts I have heard in a long time.

Gretchen

[Guest guest]

I tried so hard not to be in a W.C. and in pain all the time.No one (family )

could understand why I gave in after all my dad had CMT and was not in a chair

at my age.I got accused of being in a chair because my friend was in one.I got

in his extra chair one day because I was hurting so bad...and it was a new found

relief and freedom and I could do so many more things pain free.I don't know if

my family to this day understands! Just know I feel better and thats what

counts.

Geri

[Guest guest]

too bad people don't look at it as another way to get around.

Geri

[Guest guest]

I use a powered wheelchair, and feel " liberation " from using it as well. It is

my ticket to freedom. I wanted to share a poem that I recently wrote about

this, so here it is...Kathleen.

" My Wheelchair "

It moves me in the literal sense

But also in my heart and soul

It enables me to fly whereas

Before I did not have wings

Here is the freedom to live again

I was imprisoned and so lost

It gave me the strength

I needed to conquer weakness

And the wisdom to inspire myself

In the darkness

Others would try to steal from me

The smallest bit of hope I owned

They never knew the torment

Of trying to accept my fate

And unknown realities

I was immune to happiness

And relented to a black cave

Though I soon awoke to kill

That beast called denial

Still afraid

But today I am taking flight

This powered chair is my ticket

To every rainbow I might see

And will help me travel to

The light at the end of the tunnel

As I ride this rollercoaster of my life

I can feel the wind against my face

And when it begins to rain

I welcome it

For the sunshine will return

And I have the freedom to live again.

[Guest guest]

Hi,

I have only used a weelchair when I was in hospital, because of their rules.

Always liked the ride, because I knew I COULD get up and walk, if I wanted to.

But to use it all the time, not being able to walk at all, that must be

tough. I would rather lend on a walker. Saw a man yesterday, he was really

lending on his walker. He couldn't move his feet so he kind of carried himself

around using his arms and a walker. It looked hard, but if it was my choice, I

would do it like that too! 

Beata  

________________________________

From: " MommyToJase@... " <MommyToJase@...>

Sent: Wednesday, August 19, 2009 8:43:31 PM

Subject: Re: wheelchair

 

I agree Ruth,

The WC gives a lot of people a life that other wise they wouldn't have. One of

my best friends is in a WC. She can't walk and without her chair she wouldn't be

able to go anywhere or do anything but sit and lay down.

In a message dated 8/19/2009 9:01:52 A.M. Pacific Daylight Time,

rulevpacbell (DOT) net writes:

I've sometimes heard the phrase " confined to a wheelchair " , but now that I'm

using one, I think the phrase should be " liberated by a wheelchair " .

[Guest guest]

Ruth,

I'm in a similar boat and I think I love your message. In fact, I made part of

it one of my favorite quotes on my Facebook page - giving you proper credit of

course.

T.

>

[Guest guest]

GREAT poem! I loved it! I believe that if the worst thing that happens to me

is ending up in a wheelchair, I am lucky.

[Guest guest]

Had to add my 2 cents in. I was told at 22 that i would be in a wheelchair at

40. FREAKED me out. At 42, i ended up getting a scooter. I was so nervous to use

it because of the fear of how people would see me and how i would see/feel

myself.

Well, " liberated by a wheelchair " is EXACTLY how i felt. I never tired out

anymore; was able to go to outdoor fairs, concerts, malls, neigborhood swimming

pool without having to drive and just about anywhere that had a ramp. It was so

liberating and i found myself saying yes more often to doing things.

I do not use it all the time, but at least i know i do not have to say no

anymore. Took it on my honeymoon, and thank goodness i did because the walk for

our room to the dining area or the pool was very very long. I did not have to

rely on my husband to help me and i was much more independent!

I also use it at the airport. Can wheel my suitcase behind me, drive right up to

the gate, be first on the plane and my scooter is waiting for me when i get off.

They just take it right below the plane. The more i think about it, the more

benefits i see when you need it. You also can avoid lines at amusement parks

which really helps at Disney!

And remember, it does not mean you are " giving into the disease " It just means

that you have another accomodation to use when your body needs it.

Jackie