our attitudes

[Guest guest]

Vicky,

I love your attitude and I agree...it's not what we have, it's what w

do with what we have. I feel that one of the advantages of having CMT

(if advantage is the corect word) is that we can do a lot of

educating by example rather than by word. Some feel life is over if

they have a disability but it is only if you let it be.

You can do almost anything you want to do, you might just have to do it a

different way. When I started working for my last boss I was using a

cane and she said later that she had never worked with anyone who had

a physical disability and didn't know what to expect of me so she

decided to treat me like anyone else and see what I could do.

By the time I retired almost 20 years later, I was using a scooter but was

doing almost everything everyone else was doing. I know that I was

watched by people all over the building and people tried to be

helpful. If anyone did offer assistance, I usually let them because

I know it makes people feel good to think they have helped someone

and that encourages them to offer assistance again when I or someone

else might really need help.

Also if you let people help sometimes it saves your strength and energy for

later when there might not be snyone nearby to help.

Vicky, your attitude toward using a wheelchair is admirable and

reflected in your ID name...eagle fly. That's how I feel about my

scooter..after struggling to get around for so long with a cane and

then a walker, I was thrilled to have a wheelchair or scooter. It

made me feel that I could fly...I just wish I had a little rocket

gooster on my scooter so I could go faster!!Although I've had people

at the mall tell me to slow down. I don't have time to slow down, I

have things to do and places to be!! Besides I went slow for too

long, so move over please and let me through.

I find some people feel sorry for me and others are envious

(especially when shopping) I always have a seat and don't have to

stand in long lines! It's easier to carry packages. It' a great

conversation starter and kids are drawn to you, (actually to the

scooter, they either want to ride it or they wonder why you

have " that " inside a building).

My aunt insists that I have " grit " because I do things and don't sit and feel

sorry for myself, and then my mother always wants me to show people my braces.

Both of these ways of treating me are annoying because I'm not doing anything

special. Oh well, I guess I'm educating them too.

Vicky, you definitely sound like you have learned to " Bloom where you

are planted. " Hope you will share with us often.

Sue

[Guest guest]

Sue,

Funny that you should write about this. I am 43 years old and have used a cane

for the last 10 years. The last 2 years, I have had to start wearing braces full

time and started using a walker in the last 6 months. I just got an electric

scooter, wheelchair van and lift. I was so nervous about getting the

" handicapped van " .

In so many respects, I now feel free again. I went to the mall 4 times in the

last week, more than I have in the last year! I too had to have people tell me

to slow down and my friends feel like they don't have to exercise when they are

with me because I a make them walk faster! (LOL)

I have noticed that people treat me very differently, not good or bad, just

different when you are in a wheelchair. I just talk to them as if I was not

sitting and let my natural personality shine!

I have to get to the point where I do let people help me. When I was leaving the

mall, a man followed me to my car (which could be dangerous) but he stayed back

and told me he just wanted to make sure I did not need any help. He was so kind.

I too feel like I do not do anything special, except live each day. Everyone I

know tells me how in " awe " they are of me. Why, because I wake up everyday and

do what everyone else does? I tell people that the only alternative is to lay in

bed and feel sorry for yourself. I realize I am very fortunate because although

I have extreme weakness and fatigue, I do not suffer from the pain I hear about

so often. THAT is hard to deal with on a daily basis.

Thanks for sharing your thoughts!

Keep on smiling

Jackie

[Guest guest]

Hi Sue,

Thank you for that really nice letter and it was great to hear your story also,

you should be very proud of yourself. I also use a scooter, and your right, it's

total freedom !!

Since I can't stand at all, and I'm very weak all over and even getting off the

toilet is like climbing Mt. Everest, lol There is no one in the house that can

lift me, my Mom is almost 80 years old, and my son has CMT. also. He has upper

body strength, but not good balance. So believe me everyday is a challenge. But

a good one!!!!!!!!

Many years ago they told my Dad he had Fredrick's Ataxia, so of course all of

the 4 kids with this, we were all label with that, but my sister took her son in

to have him tested, and we found out it was CMT. So that means that's what the

rest of us have.

Totally cool, because the other is a lot worse. In our family, all kids who have

it, have a balance problem, they have no reflexes, didn't start walking until

after the age of 2, some have high arches, some don't, finger and toes start to

pull up on some, not all.

But lucky me, I got everything this disease has to offer, I guess I'm the lucky

chosen one, lol No one every says anything mean to me, I love people and can

talk to anyone, I'm for sure, not shy, thank God, And living in the same house

for 44 years is great !!, I'm very lucky to have a lot of great friends, they

keep me stable, lol well somewhat.

Have a great night Sue, hope to hear from you again,

Take Care,

Vicky S.

[Guest guest]

Vicky,

I also can't stand without holding onto something. I have developed the habit of

bracing myself with the back of my legs touching the chair when I stand to pull

up my slacks and never sit down without feeling the chair behind me with the

back of my legs. I have moved chairs all the way to the wall as sometimes I lean

too hard! I have also loosened the toilet so that when I go to sit or stand and

lean against it the toilet bowl tips a little and touches the wall which then

puts pressure on the pipe underneath and sometimes drips enough to have to put

the carpet in the dryer!! Talk about a disease of inconvenience!!!

Finally I had a plumber come and cement the toilet to the floor. Have you

thought of having a raised toilet put in? It's somewhat easier to transfer and

much easier to get up from than a regular low toilet or what I call a " toy

toilet " !! Even a plastic insert (about $20 I think) helps or using a portable

potty over the regular toilet so you can make it higher. Sometimes

you can find these things at Goodwill. I scrub them with a lot of bleach if I

buy used equipment. The best Christmas present I ever got was a raised toilet.

CMT is a humbling experience!! Your priorities change and simple things become

much more appreciated.

I think everyone has something to offer others. If you happen to have a

disability, I think you are observed more. Some people feel sorry for you, some

are embarrassed or afraid of you and some are wondering what they would do if

they were in your shoes. I think you teach others a lot by your attitude. If you

are always complaining and feeling sorry or yourself no one would want to be

around you.

But if you go on with your life and do the best you can, that can

inspire others to forget their troubles and get on with life...which is a gift

no matter how it's wrapped.

I volunteered for a long time in a long term care rehab hospital because my Dr.

thought it would be good for some of the patients to see that someone in a

wheelchair had something to offer. I found very quickly that most of those

patients had a lot to teach me. Many of the people I visited started out to be

patients and soon became friends. Volunteering is a good way to have a reason

for getting up every day and getting out of the house and out of yourself. I

highly recommend it.

If you aren't comfortable talking to strangers, there are lots of behind the

scenes things that need volunteers...just offer, they'll find something for you

to do. And hospitals aren't the only place that is happy to have extra help.

Call a school, library or city hall or a neighbor who might be a caregiver who

would be happy to have an hour to themselves to just sit in their room with the

door shut!

Where do you live Vicky? What is your day like?

Sue