Re: skiing with CMT

[Guest guest]

I never tried many activities as a kid but if I had wanted to ski my mom

would have let me. I think if he likes to ski do it.

[Guest guest]

Jeff,

My parents allowed me to try just about everything to find my likes and

dislikes, also those activities that I could enjoy. As a kid, I tried downhill

skiing twice (bunny slopes) but it wasn't for me, like horsebackriding was. Much

later in life, I started cross country skiing, and enjoyed it more. (lived in

Wyoming, so why not?!)

If your son WANTS to ski, I suggest letting him try it somemore. Perhaps with

more practice, he will really enjoy it. You might look into adaptive skiing for

Cassidy, too, or get some ideas from instructors in an adaptive skiing program.

And here's some info on a former blind skier with CMT - Thaddeus Neuman

http://pursueyourhappiness.com/about.html Unfortunately Thaddeus passed away

last summer, but he was an inspiration to many. (Note: he passed away from

complications of Diabetes, not his CMT)

Gretchen

[Guest guest]

jjw109@... writes:

>I am ambivalent about whether to bring him again. Part of me feels like I

may be setting him up for failure<

Jeff, It's only setting him up for failure if you tell him he is going to ski in

the Olympics

[Guest guest]

Jeff,

Don't limit what your son can do. Let him decide what he wants to do and support

him all the way. I have a friend with CMT who played high school

football and baseball all the while wearing AFOs. He now hunts and fishes and

rides a motorcycle wearing his AFOs. I am pretty active too. Let your son decide

what he wants to do and let him enjoy it to the best of his abilties.

[Guest guest]

Hi Jeff:

I did not learn how to ski until I was 34 years old. I did find it difficult

at first, but I think that can be said of any new activity.

Ski boots were indeed very rigid to me but they did give me good support.

Initially I felt my movements were very restricted with all the clothes and

boots one must wear to ski. My balance was not the greatest either. But I

think that was only natural. After all, I am only 5'4 " and I was using a

friends newly " tuned " skis - Rosignal's 120s. What a way to learn...just

point the skis south and go. WOW! I soon learned how to traverse down the

hill, and to get a shorter ski.

The tow ropes on the bunny hills was a bit of a challenge, but nothing like

the chair lifts. What a thrill that was for the first time. When the chair

hit me in the butt I fell down causing the operator to stop the lift. I had

help getting me on the chair. When the operator started the lift again, he

knocked the poles out of my hands lowering the safety bar. He simply gave my

poles to the people in the chair behind me. What an introduction to chair

lifts!

However, after I learned how to ski, balance was no longer an issue. I also

learned how to dress properly so my movements did not feel restricted. I am

very grateful that I learned how to ski, not only for the fun, but I saw

some beautiful places and met some great people.

Two of my favourite places are Banff National Park in Alberta, and Mont

Tremblanc in Quebec. I have a few other medical issues that prevent me from

skiing today, but not my CMT.

Regards,

[Guest guest]

Hi Jeff:

Our little guy Gavin whose 4 and 1/2 and has 1A has started skiing this

year. We find that the boots really do support him well..he's doing

snowplow and given one particularly weak hip is having a harder time turning

left than right..but as his instructor says he'll find a way that works for

him...he manoeuvers around despite it and is having fun...that's the best

part. He has in general improved his overall stamina in the last few months

and I wonder to what extent its due to the overall benefit of the skiing and

swimming he's in.

He doesn't seem upset that he's not progressing as fast as his buddies so I

don't think it sets them up for failure. Also here in Canada we have the

Canadian Association for Disabled skiing (CADS) program. They have clamps

that go on his ski tips to make it less effort for him to balance and hold

the snowplow position. Down the road they have outrigger ski poles to help

balance and ultimately he may move to a sit-ski.

Their advice to us was to keep him involved if he's interested and he can use

these different options as things progress. They showed us the sit-ski...the

gentleman was going faster and more elegantly down an intermediate run than I

do! Apparently they are a blast and a real rush because being close to the

ground you feel the speed more. Lots of options, esp. if it might be a family

activity. I don't know if they have an equivalent group in the US..but I would

expect so.

Check out the website for more info...

www.disabledskiing.ca/national/eng_home.htm

<http://www.disabledskiing.ca/national/eng_home.htm>

I chuckled when you said you're between 'denial and excessive concern' That

was Rob and I to a T...once we saw him managing to do 3 runs in a hour

lesson and going up the chair lift we knew we made the right

decision...we've put him in private lessons for now but will go to group

next year once he gets more control under his belt. It took about a month

of lessons for things to click.

I say go for it and let him know that however he manages is fine ..but a

good helmet is mandatory! If he's motivated he'll find a way.

Cheers

Sally

skiing with CMT

Hello all. I was wondering if anybody could give us some advice regarding

skiing with CMT. Our PT thought it would be a good idea because the ski

boots would act like his AFOs. I took him last week. He's only five, and I'm

not sure what to expect, but it seems to me that he has problems maintaining

his balance. I am ambivalent about whether to bring him again. Part of me

feels like I may be setting him up for failure. On the other hand, I'm

worried that perhaps Patty (our PT) is right, and I should give it more

time. He really wants to ski like his older brother and myself. I feel lost

somewhere between denial and excessive concern. Any thoughts are

appreciated, as always.

--Jeff

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