Re: using scooters

[Guest guest]

I have used a scooter at work for years, and it feels kinda like a toy, like a

golf cart, and doesn't seem to have the same medicalized stigma associated with

it as a wheelchair. (We tend to assume that if somebody is a wc user they are

unable to walk at all, which may or may not be true.)

One of the ways I changed in my attitude towards wheelchairs was to have the

opportunity to know some very strong, athletic, sexy, physically fit chair users

who blew my socks off by their athleticism and health (physical, emotional and

spiritual). I also searched Youtube and found alot of videos that helped me see

that I could be a wc user AND be strong, happy, sexy, productive not in spite of

the chair, but, in many ways, enhanced through it.

Ironically, it was always the thing I feared the most about CMT (that it would

progress to the point where I would need to use a WC), and now I know that the

fear was based on (wrongly) thinking it equated with sick, weak, defective,

isolated, cast-off etc. It doesn't have to be that at all.

Peace,

Lynna

[Guest guest]

well said Lynna!

Re: Using scooters

 

I have used a scooter at work for years, and it feels kinda like a toy, like a

golf cart, and doesn't seem to have the same medicalized stigma associated with

it as a wheelchair. (We tend to assume that if somebody is a wc user they are

unable to walk at all, which may or may not be true.)

One of the ways I changed in my attitude towards wheelchairs was to have the

opportunity to know some very strong, athletic, sexy, physically fit chair users

who blew my socks off by their athleticism and health (physical, emotional and

spiritual). I also searched Youtube and found alot of videos that helped me see

that I could be a wc user AND be strong, happy, sexy, productive not in spite of

the chair, but, in many ways, enhanced through it.

Ironically, it was always the thing I feared the most about CMT (that it would

progress to the point where I would need to use a WC), and now I know that the

fear was based on (wrongly) thinking it equated with sick, weak, defective,

isolated, cast-off etc. It doesn't have to be that at all.

Peace,

Lynna

[Guest guest]

These scooters have been advertised all over tv to the point that some people

just use them and don't even see if AFOs would keep them walking. I don't think

its a good idea to give up on walking cause its easier to sit in a chair and use

a scooter. I esp think using a scooter or w/c is not a good idea for a kid

unless it is absolutely necessary. Some well meaning mom's have gotten their

kids scooters cause their kids didn't want to try afo's. Being up and walking

around is much better for your body. For kids it helps keep them a part of their

group.

If my friend back in elementary school had had a cart I don't think he would

have been playing baseball at recess, instead he would have been off to the side

watching not feeling a part of the group. He had braces, metal ones at that

time, and he was out there playing baseball with the rest of his friends. He

couldn't get around as fast but he was out there having fun, being a part of the

group, not sitting off to the side watching on his scooter.

Bob

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[Guest guest]

Bob,

i agree with your statements especially for the young and strong. I actually use

my scooter WITH my AFOs and would prefer to walk if i could better, but at least

in the last 5 years, i have not turned down any invitations because i have an

alternative mode of transportation. As a teen and young adult, i drove my bike

instead of driving and would do anything to have that choice back again!

jackie

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[Guest guest]

I heard the mom who wrote about her child using a wheelchair describing a child

who had found freedom and joy in the independence of being able to move freely

(and gracefully?) (perhaps for the first time ever?). That, to me, sounded like

a hugely positive milestone, and I found myself wondering about a family dynamic

healthy enough to rejoice over this transition.

I hear you saying, Bob, that you don't want to see people taking the easy way

out by providing children with wheels to make it easier when walking is always

preferable. I'm not so sure that assumption is valid, and definitely not in

cases where using an AFO is less safe and results in the child/person being

less able than using a wheelchair. We must battle the kind of thinking that says

" Walking is the ideal and the better we can approach the ideal (or the better we

can hide not being ideal), that is always better. " I think we must also battle

the assumption and thinking that assumes a child who can run bases made possible

by braces will automatically be more accepted and fit in better than the child

in a wheelchair. Who says the child in the wheelchair couldn't fly around the

bases with more grace and ease and be the most popular kid on the field?

One last thought. Anybody who thinks using a wheelchair is taking the easy way

out, probably doesn't know how strenuous it can be to load/unload, propel over

obstacles, propel up inclines etc. My wheelchair use is helping me get

physically fit for the first time in my life!

Lynna

From: robert30@...

Date: Mon, 30 Aug 2010 01:19:21 +0000

Subject: Re: using scooters

These scooters have been advertised all over tv to the point that some people

just use them and don't even see if AFOs would keep them walking. I don't think

its a good idea to give up on walking cause its easier to sit in a chair and use

a scooter. I esp think using a scooter or w/c is not a good idea for a kid

unless it is absolutely necessary. Some well meaning mom's have gotten their

kids scooters cause their kids didn't want to try afo's. Being up and walking

around is much better for your body. For kids it helps keep them a part of their

group.

If my friend back in elementary school had had a cart I don't think he would

have been playing baseball at recess, instead he would have been off to the side

watching not feeling a part of the group. He had braces, metal ones at that

time, and he was out there playing baseball with the rest of his friends. He

couldn't get around as fast but he was out there having fun, being a part of the

group, not sitting off to the side watching on his scooter.

Bob

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[Guest guest]

Plain and simple..........I'm for comfort...no matter how young or old and if it

is just to please others or not bring a part of because of my needs, then Forget

it, dont need those people anyway!

Geri

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[Guest guest]

It's important to remember that everyone is different, especially children

affected by CMT.  Not everyone is a candidate for AFOs.  AFOs are for specific

medical conditions.  AFOs can be tremendously advantageous for certain

patients,

but they are not a remedy for every condition that limits a person's mobility.

I don't have foot-drop, but I do have significantly restricted mobility due to

other CMT-related problems.  I'm not a candidate for AFOs, but I am extremely

grateful for my scooter.  Without it, I'd never make it into another store or

be

able to walk my dog around the block again.  My quality of life is

significantly

greater as a result of my scooter. 

I'm so glad there are a multitude of mobility devices available for CMT

patients, who suffer from a wide variety of mobility issues, and I enjoy

hearing

about all the options.  However, when some people instruct others, such as

myself, what we should or should not be doing or the type of device we should

or

should not be using to gain the greatest level of mobility and health...that is

giving medical advice.  That's not what this site is about.  We're here to

share

personal experiences and encouragement, not put others down for their choices,

especially parents of children with CMT, who have quite enough to manage

already.

Let's leave the judgment of what's medically best for each individual up to

the

patient, the parents (where applicable), and the treating healthcare

provider(s). 

 

________________________________

From: C m IDN <robert30@...>

Sent: Sun, August 29, 2010 6:19:21 PM

Subject: Re: using scooters

 

These scooters have been advertised all over tv to the point that some people

just use them and don't even see if AFOs would keep them walking. I don't think

its a good idea to give up on walking cause its easier to sit in a chair and use

a scooter. I esp think using a scooter or w/c is not a good idea for a kid

unless it is absolutely necessary. Some well meaning mom's have gotten their

kids scooters cause their kids didn't want to try afo's. Being up and walking

around is much better for your body. For kids it helps keep them a part of their

group.

If my friend back in elementary school had had a cart I don't think he would

have been playing baseball at recess, instead he would have been off to the side

watching not feeling a part of the group. He had braces, metal ones at that

time, and he was out there playing baseball with the rest of his friends. He

couldn't get around as fast but he was out there having fun, being a part of the

group, not sitting off to the side watching on his scooter.

Bob

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[Guest guest]

I just thought of another example of a friend who wore AFOs. He played major

college Div I basketball wearing AFOs. He had weak ankles and wore short AFOs

just like I have. He wore them all of the time and played a lot. I guess his mom

could have gotten his dr to have Rx's him a power w/c or a cart but he would

have been playing w/c bball then. There is nothing wrong with w/c bball. I have

a friend who plays that and loves it. He was in a bad car wreck and can't walk

so he plays w/c bball. My other friend wanted to play NCAA bball so he got and

wore AFOs. It's interesting one of the premier makers of sports bracing,

Townsend, now makes AFOs and KAFOs. They use the same technology developed for

their sports braces for orthopedic braces. I don't think my friend would have

been happy had his dr told him to get a power w/c or a cart. AFOs made sense for

him.

Bob

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[Guest guest]

We just bought a scooter for my 9 year old. It will mostly be used when we are

on big family outings where she normally gets exhausted from trying to keep pace

& to travel across campus several times each day. Yesterday we took it for a

test spin as we did some errands. It was priceless to see the look of sheer joy

on her face as she was out in front, calling to us all to hurry up, we were

being such slowpokes! She is able to walk with her AFOs, but I don't think I

really understood until yesterday how much it took mentally & physically to

constantly try & keep up with the rest of the family.

I was very hesitant for a long time to get her a scooter or wheelchair because

she could still walk & I didn't want to promote a sedentary life for her. It

looks like she is going to actually be much more active and involved with her

peers as a result of the scooter because she will be able to keep up with them

when they go running off to play.

All the kids & adults are different, but this is such a recent topic in my

house, I felt I should share.

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[Guest guest]

,

Made me tear up. Lucky daughter to have you for a mom.

Lynna

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[Guest guest]

I'm glad your daughter likes her scooter. Make sure she keeps walking. If she

begins to only use her scooter she will become weaker. While it might seem

" cool " to her now to ride along with her classmates and friends, it would be

hard for her to participate in most activities at recess etc in a scooter. There

are some moms out there who " doctor shop " till they find one who will basically

Rx what they want for their kids whether its needed or not. When I was your

daughter's age I had metal braces and did most of what my friends did at school

and recess. I may have been slower but I was out there doing what I could. I

don't know if I would have done that had I had a scooter. Being sedimentary is

not good for the human body. People who have to use a wheelchair have to do

therapy or exercises to reverse the problems with being in a chair all day.

>

> We just bought a scooter for my 9 year old. It will mostly be used when we

are on big family outings where she normally gets exhausted from trying to keep

pace & to travel across campus several times each day. Yesterday we took it for

a test spin as we did some errands. It was priceless to see the look of sheer

joy on her face as she was out in front, calling to us all to hurry up, we were

being such slowpokes! She is able to walk with her AFOs, but I don't think I

really understood until yesterday how much it took mentally & physically to

constantly try & keep up with the rest of the family.

>

> I was very hesitant for a long time to get her a scooter or wheelchair because

she could still walk & I didn't want to promote a sedentary life for her. It

looks like she is going to actually be much more active and involved with her

peers as a result of the scooter because she will be able to keep up with them

when they go running off to play.

>

> All the kids & adults are different, but this is such a recent topic in my

house, I felt I should share.

>

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[Guest guest]

We went to NYC today to see the Intrepid and go to the new Lego store. What a

wonderful yet hot day. Unfortunately my son's feet hurt him so much from the

walking (yes he can and does walk but it is painful) that his enjoyment was

limited and we had to go at his pace and rest lots. He is now exhausted and

will most likely not do anything tomorrow. We ended up taking a taxi back to

the waterway to get home. He fell asleep immediately in the car. So what is a

mom to do?

Boy a scooter would have been wonderful today although he only would have needed

it for the later part of the day. We would all have had a wonderful day and not

have had to cut it short as his condition

normally does. I think there are times when a scooter is the best invention

around. We do not have one and I do not feel he needs one at this point but boy

would it come in handy at times and really help him get through his day pain

free. Just my .02 cents

Lori

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[Guest guest]

Lori,

" So what is a Mother to do " ....Is this the same child that was hurting and

couldnt go to the water park ? Oh well.....perhaps not.

I'm wondering what is the stigma of a person/child riding on a mobility device

for comfort is?

No one should have to suffer like that, is he the only one in the famiely with

CMT? Sorry Mom, but you make it sound like your son is ruining the trip for

others! I hope he dont feel that way! Why does he have to be in so much pain, be

so exhausted and why is his injoyment limited?

What do you mean when you say.. " you dont think he needs a scooter at this

point " How much more pain does he have to be in and how much more exhausted does

he have to be? Just wondering!

Geri

---- Original Message -----

From: Lori Mattheiss

Sent: Tuesday, August 31, 2010 5:48 PM

Subject: Re: using scooter

We went to NYC today to see the Intrepid and go to the new Lego store. What a

wonderful yet hot day. Unfortunately my son's feet hurt him so much from the

walking (yes he can and does walk but it is painful) that his enjoyment was

limited and we had to go at his pace and rest lots. He is now exhausted and will

most likely not do anything tomorrow. We ended up taking a taxi back to the

waterway to get home. He fell asleep immediately in the car. So what is a mom to

do?

Boy a scooter would have been wonderful today although he only would have

needed it for the later part of the day. We would all have had a wonderful day

and not have had to cut it short as his condition

normally does. I think there are times when a scooter is the best invention

around. We do not have one and I do not feel he needs one at this point but boy

would it come in handy at times and really help him get through his day pain

free. Just my .02 cents

Lori

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[Guest guest]

Bob,

What is your thing with scooters?.If I would have had a scooter in school I may

have finished school! I have metal beaces and cant do anyhting with them on.I

hate them and cant ware them at all, they weigh a ton! Just $3,000...down the

drain!

Everyone has their own needs and everyone is different!

Why put things off if one is in need and is in pain! I'm not in a wheel chair

thinking that its cool.....I'm in one because I need to be!

Geri

> > > > >

[Guest guest]

Hi Lori !

Just wanted to plant a seed, there are many companies available to rent a

scooter from throughout the U.S. - especially in major tourism cities. There are

indeed days when they are needed for our CMT kids.

When we went to Baltimore last January, overdid the walking and couldn't

make it out of the car to visit DC the next day. I can totally relate.

>

> We went to NYC today to see the Intrepid and go to the new Lego store. What a

wonderful yet hot day. Unfortunately my son's feet hurt him so much from the

walking (yes he can and does walk but it is painful) that his enjoyment was

limited and we had to go at his pace and rest lots. He is now exhausted and

will most likely not do anything tomorrow. We ended up taking a taxi back to

the waterway to get home. He fell asleep immediately in the car. So what is a

mom to do?

>

> Boy a scooter would have been wonderful today although he only would have

needed it for the later part of the day. We would all have had a wonderful day

and not have had to cut it short as his condition

> normally does. I think there are times when a scooter is the best invention

around. We do not have one and I do not feel he needs one at this point but boy

would it come in handy at times and really help him get through his day pain

free. Just my .02 cents

>

>

> Lori

>

>

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[Guest guest]

No not the same child that couldn’t go to the water park as he loves water

parks and swimming and not same child with family history or CMT. No stigma

but he is active and can walk and get around. My point was that we got going

at 9:00 am and he was great until about 1:00 when he could have used a

scooter at that point. We were walking around the intrepid and NYC. You

cannot just pick up a scooter anywhere when it is needed. If we were at

Disney, yes we would have a scooter for him. Currently we accommodate to him

and plan around his energy level which is fine with everyone. I would never

expect him to continue on walking past his comfort level. That is why we got

the taxi rather than walk back. I think you really misunderstood what I was

trying to say. He is an active 11 year old that because of the CMT tires

more easily and has painful feet. I would think others with CMT would

understand this and not just say gosh put the kid in a scooter or wheelchair

like he is totally disabled. My point was he could use it sometimes for

limited reasons but it isn’t something he needs all the time and I would not

want to encourage that. It also is not something you could get at last

minute for short periods of time. If we had a long trip planned we might

consider it but for now we plan to his needs and comfort to no one else’s

disappointment.

From: [mailto: ] On Behalf Of Geri

Logan

Sent: Tuesday, August 31, 2010 10:10 PM

Subject: Re: using scooters

Lori,

" So what is a Mother to do " ....Is this the same child that was hurting and

couldnt go to the water park ? Oh well.....perhaps not.

I'm wondering what is the stigma of a person/child riding on a mobility

device for comfort is?

No one should have to suffer like that, is he the only one in the famiely

with CMT? Sorry Mom, but you make it sound like your son is ruining the trip

for others! I hope he dont feel that way! Why does he have to be in so much

pain, be so exhausted and why is his injoyment limited?

What do you mean when you say.. " you dont think he needs a scooter at this

point " How much more pain does he have to be in and how much more exhausted

does he have to be? Just wondering!

Geri

---- Original Message -----

From: Lori Mattheiss

<mailto:%40>

Sent: Tuesday, August 31, 2010 5:48 PM

Subject: Re: using scooter

We went to NYC today to see the Intrepid and go to the new Lego store. What

a wonderful yet hot day. Unfortunately my son's feet hurt him so much from

the walking (yes he can and does walk but it is painful) that his enjoyment

was limited and we had to go at his pace and rest lots. He is now exhausted

and will most likely not do anything tomorrow. We ended up taking a taxi

back to the waterway to get home. He fell asleep immediately in the car. So

what is a mom to do?

Boy a scooter would have been wonderful today although he only would have

needed it for the later part of the day. We would all have had a wonderful

day and not have had to cut it short as his condition

normally does. I think there are times when a scooter is the best invention

around. We do not have one and I do not feel he needs one at this point but

boy would it come in handy at times and really help him get through his day

pain free. Just my .02 cents

Lori

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[Guest guest]

Thanks . For extended trips we will definitely consider this option.

Lori

From: [mailto: ] On Behalf Of

julie

Sent: Wednesday, September 01, 2010 11:49 AM

Subject: Re: using scooters

Hi Lori !

Just wanted to plant a seed, there are many companies available to rent a

scooter from throughout the U.S. - especially in major tourism cities. There

are indeed days when they are needed for our CMT kids.

When we went to Baltimore last January, overdid the walking and

couldn't make it out of the car to visit DC the next day. I can totally

relate.

>

> We went to NYC today to see the Intrepid and go to the new Lego store.

What a wonderful yet hot day. Unfortunately my son's feet hurt him so much

from the walking (yes he can and does walk but it is painful) that his

enjoyment was limited and we had to go at his pace and rest lots. He is now

exhausted and will most likely not do anything tomorrow. We ended up taking

a taxi back to the waterway to get home. He fell asleep immediately in the

car. So what is a mom to do?

>

> Boy a scooter would have been wonderful today although he only would have

needed it for the later part of the day. We would all have had a wonderful

day and not have had to cut it short as his condition

> normally does. I think there are times when a scooter is the best

invention around. We do not have one and I do not feel he needs one at this

point but boy would it come in handy at times and really help him get

through his day pain free. Just my .02 cents

>

>

> Lori

>

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[Guest guest]

Lori - I got that from your post - you were very clear. I agree completely -

you try to plan for things so that those who are not affected with CMT can also

enjoy themselves.

Disney is so easy because you can get a scooter or chair when the time is right.

Larger excursions require more planning...I only mentioned the rental companies

because it's always comforting to know you have one in the hotel if you need

one. Your cab call was the perfect solution to help him out.

We brought the power assist chair on our cruise, and he never had to use it! He

was able to sit and rest as often as he needed on and off the ship, but I felt

so much relief knowing it was there if we needed it.

It's hard being a mom of kids who are CMTers and kids who aren't. The balance

isn't always easy to achieve!

-- In , " Lori Mattheiss " <mattheiss137@...> wrote:

>

> No not the same child that couldn't go to the water park as he loves water

> parks and swimming and not same child with family history or CMT. No stigma

> but he is active and can walk and get around. My point was that we got going

> at 9:00 am and he was great until about 1:00 when he could have used a

> scooter at that point. We were walking around the intrepid and NYC. You

> cannot just pick up a scooter anywhere when it is needed. If we were at

> Disney, yes we would have a scooter for him. Currently we accommodate to him

> and plan around his energy level which is fine with everyone. I would never

> expect him to continue on walking past his comfort level. That is why we got

> the taxi rather than walk back. I think you really misunderstood what I was

> trying to say. He is an active 11 year old that because of the CMT tires

> more easily and has painful feet. I would think others with CMT would

> understand this and not just say gosh put the kid in a scooter or wheelchair

> like he is totally disabled. My point was he could use it sometimes for

> limited reasons but it isn't something he needs all the time and I would not

> want to encourage that. It also is not something you could get at last

> minute for short periods of time. If we had a long trip planned we might

> consider it but for now we plan to his needs and comfort to no one else's

> disappointment.

>

>

>

> From: [mailto: ] On Behalf Of Geri

> Logan

> Sent: Tuesday, August 31, 2010 10:10 PM

>

> Subject: Re: using scooters

>

>

>

>

>

> Lori,

>

> " So what is a Mother to do " ....Is this the same child that was hurting and

> couldnt go to the water park ? Oh well.....perhaps not.

>

> I'm wondering what is the stigma of a person/child riding on a mobility

> device for comfort is?

>

> No one should have to suffer like that, is he the only one in the famiely

> with CMT? Sorry Mom, but you make it sound like your son is ruining the trip

> for others! I hope he dont feel that way! Why does he have to be in so much

> pain, be so exhausted and why is his injoyment limited?

>

> What do you mean when you say.. " you dont think he needs a scooter at this

> point " How much more pain does he have to be in and how much more exhausted

> does he have to be? Just wondering!

>

> Geri

>

> ---- Original Message -----

> From: Lori Mattheiss

> <mailto:%40>

> Sent: Tuesday, August 31, 2010 5:48 PM

> Subject: Re: using scooter

>

> We went to NYC today to see the Intrepid and go to the new Lego store. What

> a wonderful yet hot day. Unfortunately my son's feet hurt him so much from

> the walking (yes he can and does walk but it is painful) that his enjoyment

> was limited and we had to go at his pace and rest lots. He is now exhausted

> and will most likely not do anything tomorrow. We ended up taking a taxi

> back to the waterway to get home. He fell asleep immediately in the car. So

> what is a mom to do?

>

> Boy a scooter would have been wonderful today although he only would have

> needed it for the later part of the day. We would all have had a wonderful

> day and not have had to cut it short as his condition

> normally does. I think there are times when a scooter is the best invention

> around. We do not have one and I do not feel he needs one at this point but

> boy would it come in handy at times and really help him get through his day

> pain free. Just my .02 cents

>

> Lori

>

> >

> >

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[Guest guest]

I was mostly talking about mom's who dr shop till they find a dr who will Rx on

for their kid. I think its much better for a kid to be up and walking with his

friend, braces or not. I wore my braces and walked. I'm afraid if a kid gets a

scooter or power w/c they will become sedimentary and sit on the sidelines

watching their friends do things. I know I did most everything my friends did

and I had a friend who regularly played baseball at recess with our friends

wearing braces. If he or I had a scooter or power w/c I don't think we would

have done that. Maybe for you a w/c is best. I'm not sure its good for a kid

just cause it looks cool and they don't want to try afos.

>

> Bob,

>

> What is your thing with scooters?.If I would have had a scooter in school I

may have finished school! I have metal beaces and cant do anyhting with them

on.I hate them and cant ware them at all, they weigh a ton! Just $3,000...down

the drain!

>

> Everyone has their own needs and everyone is different!

>

> Why put things off if one is in need and is in pain! I'm not in a wheel chair

thinking that its cool.....I'm in one because I need to be!

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> Geri

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[Guest guest]

Lori,

I think this was FAR more valuable than 2 cents! I cannot believe what

some of the writings were about here. How short-sighted some people

were. Only the individual knows what they can handle and no one else

should judge them for what they do. For a non-CMT parent, I think you

show incredible empathy and understanding for your son. Way to go!

Mark

>

> We went to NYC today to see the Intrepid and go to the new Lego store.

What a wonderful yet hot day. Unfortunately my son's feet hurt him so

much from the walking (yes he can and does walk but it is painful) that

his enjoyment was limited and we had to go at his pace and rest lots. He

is now exhausted and will most likely not do anything tomorrow. We ended

up taking a taxi back to the waterway to get home. He fell asleep

immediately in the car. So what is a mom to do?

>

> Boy a scooter would have been wonderful today although he only would

have needed it for the later part of the day. We would all have had a

wonderful day and not have had to cut it short as his condition

> normally does. I think there are times when a scooter is the best

invention around. We do not have one and I do not feel he needs one at

this point but boy would it come in handy at times and really help him

get through his day pain free. Just my .02 cents

>

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> Lori

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[Guest guest]

I would rather see a child with out pain, if takes being in a scooter so be

it... I think a kid would agree, rather then being in pain.

If one is in that much pain they shouldnt be in sports anyway!

Geri

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[Guest guest]

Spot on! to each his own.

Bob has made points that i agree with.... " if you dont use it you lose it "

definitely applies to CMT...i dont think hes saying dont use a scooter, i think

he is saying be very careful if you let your kid soley rely on one just because

it makes it easier...there is a fine line in there...

like Lynna has so aptly said...only the parents have the knowlege to say what is

best for their kids, and hopefully they make the right decision...

Jim

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