Re: wheelchair use increases freedom and independence

[Guest guest]

Lynna,

You are so right but some people are to vain to use one or even a cane.

Their loss to more freedom.

Geri

[Guest guest]

I have found that using a wheelchair has profoundly increased my independence

and freedom. For instance, I can now shop circles around my ablebodied friends

when we go out. Before, I quickly exceeded my leg strength in 15-30 minutes. It

is so liberating to be able to travel across an entire store to find a restroom

and to still have endurance to complete my shopping. I can now spend hours at

the zoo with my family. I would highly encourage others to consider using a

wheelchair as a tool to increase the quality of their lives.

When I first sat down in a wheelchair, I wanted to disappear into the earth. It

took awhile before my attitude changed and I realized that it was an act of

self-care, much like wearing gloves in the winter is something I do because it

makes my life better.

My life didn't end when I started using a wheelchair, it enlarged. Ironic isn't

it!

(Not that I am suggesting that anybody stops walking or exercising. Just adding

a wheelchair when it helps.)

Lynna

[Guest guest]

I agree 100 percent! I feel sort of embarrased in my scooter sometimes, but the

payoff I get when I use it is worth it. I can go to museums, malls, I even

" hiked " a little trail in a national park this weekend and had enough energy to

attend an awards ceremony that evening. By the way, check out my film for the 48

Hour Film Project. I did the music.

This was part of a contest where you have 48 hours to write and produce a short

film from start to finish. " The 48 Hour Film Project is a wild and sleepless

weekend in which you and a team make a movie—write, shoot, edit and score it—in

just 48 hours.

On Friday night, you get a character, a prop, a line of dialogue and a genre,

all to include in your movie. 48 hours later, the movie must be complete. Then

it will show at a local theater, usually in the next week.

The genre we drew was road movie and here are the elements that each Houston

team had to include:

Character: Sherman or Sharon Brown, Recently Unemployed

Prop: a book

Line of Dialogue: " There's a $2 service charge. "

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[Guest guest]

I know a wheelchair can be a huge help, but how much trouble is it if you're not

very abled to transport a wheelchair or a scooter. My mom had a scooter about 8

years ago and the few times I had to get it in the car to move it were a huge

pain in the butt .... and I was a LOT more healthy then. We will have a small

SUV that might be better, but I'm not sure if I could lift more than a transport

chair into the back.

Lanman

[Guest guest]

Ei, ei, huevo. ;-)

That's a cute film.

>

> I agree 100 percent! I feel sort of embarrased in my scooter sometimes, but

the payoff I get when I use it is worth it. I can go to museums, malls, I even

" hiked " a little trail in a national park this weekend and had enough energy to

attend an awards ceremony that evening. By the way, check out my film for the 48

Hour Film Project. I did the music.

>

>

>

> This was part of a contest where you have 48 hours to write and produce a

short film from start to finish. " The 48 Hour Film Project is a wild and

sleepless weekend in which you and a team make a movie—write, shoot, edit and

score it—in just 48 hours.

>

> On Friday night, you get a character, a prop, a line of dialogue and a genre,

all to include in your movie. 48 hours later, the movie must be complete. Then

it will show at a local theater, usually in the next week.

>

> The genre we drew was road movie and here are the elements that each Houston

team had to include:

> Character: Sherman or Sharon Brown, Recently Unemployed

> Prop: a book

> Line of Dialogue: " There's a $2 service charge. "

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[Guest guest]

Lynna,

And it keeps getting better!

Lyn

[Guest guest]

I have the kind that breaks down, lift off the seat and base breaks in two.

I can't do it but it's easier for my husband. I went to a wheelchair store

and checked out the different types before I bought.

It's a Shoprider Smartie, bought new on line from a store in FL for under

$1800.

I use it morning to night, it's a Godsend. I used to drag myself around on

a walker, exhausted all the time. I use it in the house, shopping, just

everywhere. It's changed my life.I love it.

Jeanne

[Guest guest]

Tell us more, Lyn!

Lynna

[Guest guest]

I so completely agree with this. I have a 5yr old with CMT and She just

graduated from an adaptive stroller to a child

sized wheelchair. So far she loves it. She can push herself and go in what

direction she chooses. She can walk but not too far so the chair makes many more

possibilities open up. She can go long distances with the chair to enjoy herself

and not be left miserable and in pain from trying to walk it all.

>

> I have found that using a wheelchair has profoundly increased my independence

and freedom. For instance, I can now shop circles around my ablebodied friends

when we go out. Before, I quickly exceeded my leg strength in 15-30 minutes. It

is so liberating to be able to travel across an entire store to find a restroom

and to still have endurance to complete my shopping. I can now spend hours at

the zoo with my family. I would highly encourage others to consider using a

wheelchair as a tool to increase the quality of their lives.

>

> When I first sat down in a wheelchair, I wanted to disappear into the earth.

It took awhile before my attitude changed and I realized that it was an act of

self-care, much like wearing gloves in the winter is something I do because it

makes my life better.

>

> My life didn't end when I started using a wheelchair, it enlarged. Ironic

isn't it!

>

> (Not that I am suggesting that anybody stops walking or exercising. Just

adding a wheelchair when it helps.)

>

> Lynna

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[Guest guest]

,

Have you thought about AFOs that might help your child walk without having to

use a wheelchair. I think the post you replied to was from an adult women.

Children are different. There are so many different types of AFOs I bet there is

one that might work for your child.

Bob

> >

> > I have found that using a wheelchair has profoundly increased my

independence and freedom. For instance, I can now shop circles around my

ablebodied friends when we go out. Before, I quickly exceeded my leg strength in

15-30 minutes. It is so liberating to be able to travel across an entire store

to find a restroom and to still have endurance to complete my shopping. I can

now spend hours at the zoo with my family. I would highly encourage others to

consider using a wheelchair as a tool to increase the quality of their lives.

> >

> > When I first sat down in a wheelchair, I wanted to disappear into the earth.

It took awhile before my attitude changed and I realized that it was an act of

self-care, much like wearing gloves in the winter is something I do because it

makes my life better.

> >

> > My life didn't end when I started using a wheelchair, it enlarged. Ironic

isn't it!

> >

> > (Not that I am suggesting that anybody stops walking or exercising. Just

adding a wheelchair when it helps.)

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> > Lynna

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[Guest guest]

Lynna,

I too agree with your message. I was mortified when I first took my chair out in

public, but my girlfriends made it seem like i was on a ride at Disney and

before you knew it, others wanted to try it out! I do so much more because I now

know i have my chair to use to conserve energy for the rest of the day. There is

hardly anything i won't do. We are even taking a cruise this year. The last time

i took a cruise was 15 years ago. It was so much walking, but i was able to

handle it then. Without my chair, i would never agree to go on a cruise at this

point of my disability, but with the chair there was no hesitation when I said

yes.

It really is a feeling of freedom and most certainly of independence. If you

find you are avoiding going places due to CMT, then a scooter/chair would be an

excellent consideration so you can keep enjoying life.

Jackie

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[Guest guest]

Want to share a story:

Last Saturday, I attended a day-long auction. I zipped around all day in my

wheelchair, and felt great freedom and joy at being able to participate and in

feeling entirely whole/healthy emotionally... I've shed the stigma attached to

using it and finally realize that anybody who sees me as " less than " or

" pitiable " or " sad " is projecting their own stuff and that is not an accurate

assesment of reality.

There was a crutch-using woman at the auction. She sat down in a rolling office

chair and used it to scoot around the entire day. She looked, to my eyes, MUCH

more disabled than did I in my wheelchair. I felt sorry for her that she

seemingly was unable to use a reliable tool available to her that would make her

life much easier. I felt very uncomfortable around her because the message she

conveyed to me was one of " I don't accept myself the way I am. " People avoided

her and averted their eyes. It was sad. On the other hand, as I rolled around

smiling and strong, people engaged me in conversation. Men flirted with me. It

was obvious that I commanded a high degree of respect and positive interest.

By no means am I suggesting that anybody stop walking or not try to stay mobile

on their feet, insofar as that is the better and healthier choice for their

bodies, I'm just saying that there are situations and times when a wheelchair is

a MUCH better option, and it's usually just the fear of the stigma that keeps

many from trying it, resulting in unnecessary isolation and limitations which I

find to be very sad.

All my Best,

Lynna

From: robert30@...

Date: Sun, 29 Aug 2010 03:49:25 +0000

Subject: R e: wheelchair use increases freedom and independence

,

Have you thought about AFOs that might help your child walk without having to

use a wheelchair. I think the post you replied to was from an adult women.

Children are different. There are so many different types of AFOs I bet there is

one that might work for your child.

Bob

> >

> > I have found that using a wheelchair has profoundly increased my

independence and freedom. For instance, I can now shop circles around my

ablebodied friends when we go out. Before, I quickly exceeded my leg strength in

15-30 minutes. It is so liberating to be able to travel across an entire store

to find a restroom and to still have endurance to complete my shopping. I can

now spend hours at the zoo with my family. I would highly encourage others to

consider using a wheelchair as a tool to increase the quality of their lives.

> >

> > When I first sat down in a wheelchair, I wanted to disappear into the earth.

It took awhile before my attitude changed and I realized that it was an act of

self-care, much like wearing gloves in the winter is something I do because it

makes my life better.

> >

> > My life didn't end when I started using a wheelchair, it enlarged. Ironic

isn't it!

> >

> > (Not that I am suggesting that anybody stops walking or exercising. Just

adding a wheelchair when it helps.)

> >

> > Lynna

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[Guest guest]

A minor rant about wheelchair/scooter use/abuse ...

I took the family to Disneyland last July (5 days between D-Land and California

Adventure). For some rides, there is rapid access for the group when a guest is

in a wheelchair/scooter/etc.

As far as I can tell, D-land does not have a real policy about

wheelchair/scooter rental; you ask for and pay for one, you get it. I (and

moreso the wife) noticed groups of kids, one of whom who was in a wheelchair,

usually wearing a Neoprene knee support.

Well and good ... but it seemed that the knee brace would occasionally change

knees (I am guessing when it became hot). More interesting was when the PERSON

in the wheelchair and wearing the knee brace would change.

Ah then, perhaps I am too cynical.

[Guest guest]

I agree there will always be misuse, like able-bodied people who use the

handicap hanger from another family member to use a handicap parking spot. But

the benefit to somebody like me overcomes the bad. And as someone who has had a

power chair for over a year, after falling with AFOs and dragging myself around

with a walker, I can say that the wheelchair has changed my life. I can get

around with ease and enjoy life again...it's a Godsend. If a child has

deteriorated to such a degree that they need a wheelchair...then I say, let him

get one. AFOs are NOT for everybody...the only time I fell and really hurt

myself was WITH AFOs. They were cumbersome and made me trip. It's all about

EASE of mobility, and that's unique to every person. So I agree, let's

encourage each other and not try to diagnose somebody else's situation.

Jeanne

[Guest guest]

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I am so glad that your daughter is doing well with her new chair. As the parent

of a child who was diagnosed at 9, I truly understand the joy of seeing that

child gain some independence. My son still walks in and out of the store with me

(he's 17 now) when he can. He is good on his own for going to the movies, quick

errands and such. For school and for longer trips (to the mall and such) we

take his power assist chair. He pushes the wheels but the battery pack assists

with the distance he travels. Less fatigue is incurred.

My son has been seen by many docs over the years, and not one ever thought that

his type of CMT would benefit from the use of a brace or AFO. In fact, the last

2 docs we saw just a month ago were emphatic that AFOs were not right for him,

because he does not have foot drop (thanks to his surgeries) and his ankles are

still very strong. His biggest problem are muscle spasms in his heel cords and

upper calves and the overwhelming fatigue he suffers from. AFOs can't help with

that either.

Follow your instincts with your daughter, and enjoy her freedom. Wheelchairs

are tough to use. They require alot of strategy to navigate through folks that

are insensitive to your presence. They are hard to get in and out of cars

without special ramps and such. They are definitely not an easy way out.

As for the responses you received about scooters and chairs only being for the

elderly and obese - well it isn't worth dignifying with a response - but I will.

I have an artificial hip that is starting to wear out and if I need to use a

scooter to go to Disney then I will...and proudly. I am still out and doing and

enjoying life! It's exactly what the chairs do to help our children!

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