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Skiers with MUltiple Sclerosis

post #1 of 14
Thread Starter 
Does anyone know any PSIA skiers with Multiple Sclerosis.
I have it and am a Level I skier working on II.
Looking for some to compare notes with regarding skiing.
post #2 of 14
skier/biker, welcome to EpicSki!

I am not positive I understand your question, so allow me to ask one in response, please? Are you saying that you are a PSIA certified level 1 instructor working on your level 2 and you are looking for other instructors who are challenged by MS? Or something different from that?
post #3 of 14
Thread Starter 
Yes. I'm looking for other PSIA skiers with MS
post #4 of 14
Quote:
Originally Posted by skier/biker
Does anyone know any PSIA skiers with Multiple Sclerosis.
I have it and am a Level I skier working on II.
Looking for some to compare notes with regarding skiing.
Suggest you contact the Huega foundation. They might be able to help you find others with MS.

http://www.heuga.org/

You probably already know about Jimmy Huega and the foundation but just in case. I met Jimmy many years ago and skied with him when he could still ski normally. Great and courageous guy. I wish I had his optimism and courage.

My ex-wifes family has MS in several generations and we are hopeful that our sons do not get it. They are both about 40 and have no symptoms yet. Their uncle has it but it has been in remission for many years and has returned to a normal life of athletics and skiing.

Best of luck.
post #5 of 14
Thread Starter 
Thanks! Good idea. I'll contact them.
post #6 of 14
I have MS, but I am not PSIA. Will I do? PM me if you want specifics.

I don't have severe problems, as my case is mild relatively speaking, but I do have some problems with balance, muscle spasms, fatigue, and there's always that annoying "phantom itch" (not to be confused with HH's Phantom ).

Some days are good, some days are not. You ski well on the good days, and on the bad days, you pick your snow. I don't ski when it's Eastern ice hardpacked on the bad days. That's asking for it.

I haven't had a lot of problems this year, but there are times when I just don't have the stamina to Go, Go, Go. Most times I need breaks to ski down runs instead of all in one shot. I find that if I take mini breaks, I can last all day. Otherwise I'm depleted by noon, that sort of thing.

I am not sure if this is MS related (but this started around the same time the MS got bad, in 1992), but I get these little muscle spasms, when I'm exerting I "twitch". It feels like what is known as BedJerks....when you're falling asleep and your body gets spazzy, ya know? That happens while I'm skiing. I'll be setting up to make a turn, I know where I'm going and what I'm doing, then the body jerks and I end up out of control, tips cross, or I'm not pressuring the right ski and I have to recover quickly. This happened on Sunday, and I saved it, but sometimes I don't. :

The itch you get used to, but when it's in your face and it's really cold, I get concerned about frostbite. I imagine the feeling of bugs crawling on you can be like the first stages of frostbite, and since I ignore these feelings it could be a symptom of something else. When it's in the single digits and the wind blows, I make sure I don't stay out all that long.

What symptoms do you deal with?
post #7 of 14
Thread Starter 
Bonni..
Hi!
I have numbness, tingling all the time
but the intensity will vary depending upon the
weather, fatigue, and who knows what. It's never
exactly the same and can change from run to run
and day to day.
Balance is a problem but is improving with work.
But regardless of intensity of the symptoms I always
feel better when and after skiing.
Like you my body gets spazzy and seems to have a mind
of it's own and does it's own thing or it is stubborn and
doesn't respond to requests.
I work under the premise that there are enough unused
neuro pathways to teach the correct muscles to respond
when needed and hopefully take the MS out of the equation.
Muscle memory achieved with a lot of repititions.
I work with really good skiers, intructors, coaches, friends and have
good fitted equipment so knowing proper technique and having proper
equipment are not an issue. Doing it consistently is another issue.
I do OK on groomed consistent terrain but have trouble in irregular
conditions like the bumps where balance and the ability to respond
to terrain changes quickly is pretty important.
The question I've got is how do you work around the MS to ski in these
types of conditions. The reason I was looking for a skier with MS was
because I figured they'd have first hand knowledge about how to deal with
inconsistent unpredictable conditions, terrain, etc. from a spazzy body
perspective. From a movement analysis perspective, spazzy movements are tough for even an experieced instructor to duplicate and then to develop a progression that works in the bumps or inconsistent conditions
Looks to me like you've figured out a spazzy movement bump solution.
Let me know.
Thanks,
Bob
post #8 of 14
I ski with an individual with who has the same issues on Tuesday nights and on the weekend I will pass your information along to that person.
post #9 of 14
Hey Bob,

Sounds like we're in the same boat symptom-wise....we're not too bad off. You can't tell me from a normal person. To watch me, you'd just think I was a crappy skier. I hide it well.

Well, on second thought, I AM a crappy skier!

Seriously, you have coaching and good skiers around you and that helps. Having good equipment is a big help, too. Speaking of equipment...

I ski women's Rossi 10.7 cut 150cm skis that are now 3 years old. These were my first pair of shaped skis, so I don't know what else is out there. I don't demo and I probably should.

On a whim, Jeff set me up on his skis last week. He has new Head Monsters, 167cm (is that right, Jeff?) and they must weigh twice as much as mine. I LOVED THEM!

It seemed to me that they were easier to guide throught the chopped up stuff, easier to turn on hardpacked Eastern powder, and I worked less to get them to go where I wanted. I didn't take them on the blacks, but on the blues, they were a DREAM. I'm thinking now that I've been on the wrong skis and that for me, something a little less flighty would keep me grounded better. Food for thought.

Skiing last night was funny for me. I wasn't feeling all that hot, and even thought about not going. I was exhausted by noon, and actually took a nap (or tried to) because I just felt crappy. But! My history has it that when I feel nauseous or sick, I feel 100% better when I put on skis. You would not believe the difference it makes!

It was a whopping 10 degrees out, but it wasn't cold at all! Snow was beautiful, and I felt good on the blues, but all whacked out on the lower blacks. Instinct (?) told me to stay on the easy stuff. I've skied those black runs for 2 seasons now, and in much worse condition snow wise, but I had a gut feeling that something dreadful would happen if I stayed on them. I didn't push myself, I stayed on the blues, I had fun, I tried new things. I learned to listen to myself instead of my ego.

Bagging the harder stuff is necessary at times. I'd rather slow down and ski again today than bust my butt in the harder stuff and not ski the next day at all.

Perhaps this belongs in the instruction forum? Ask AC or dchan to move it? I'd like to hear what the other coaches have to say about your situation.
post #10 of 14
I remember reading about 3 famous ski racers with MS. Jimmy Huega and Pepi Stiegler, and 1 other I can't remember. It seemed kind of coincedental and I wondered if it was related to the extensive training?
post #11 of 14
Thread Starter 
Two of the three slalom medalist at the 1964 Innsbruck,Austria Olympics were diagnosed with MS. They were:
Gold Medalist-Pepi Stiegler,AUT (MS)
Siver Medalist-Billy Kidd, USA (N0 MS)
Bronze Medalist-Jimmie Heuga, USA (MS)
There was an article a few years ago but I don't remember the magazine.
post #12 of 14
skier/biker

You don't list your area. If you check with your regional PSIA office, specifically the adaptive section, they may be able to put you in touch with someone. They can at least put you in touch with some adaptive ski programs that may have instructors with MS on their staffs.

Here's the National PSIA Adaptive Link:

http://psia.org/psia_2002/adaptive_t.asp

This link puts you into the PSIA Division listing. Click on your division and then scroll down to the PSIA Committee Representatives. You should find someone listed on the Adaptive Committee for your region.

http://psia.org/psia_2002/whos_who/w...t.asp?mode=who

Hope this helps.
post #13 of 14
Thread Starter 
T-Square..
Hi! I'm in the PSIA Central Regional. I teach at the
Welch Village Ski and Snowboard Area in Welch, MN.
It's close to the Twin Cities of Minneapolis and St. Paul.
I was recently involved in an adaptive clinic there and our
skis school technical director is a clinic leader with the
adaptive program. Really no leads from either source.
It was the clinic leader that suggested I try Epic Ski.
I'll, also, try your suggestions. Thanks for the help.
post #14 of 14
Skier/Biker

Try this guy.

National Committee List : Adaptive Committee : PSIA Committee Member Profile
--------------------------------------------------------------------------------
David Henderson
Central Division

W162N11685 Park Ave

Germantown, WI 53022-2529

Email: dshend@execpc.com
Phone: (414) 643-4123
Fax: (414) 643-4210

Dave has lead several clinics I attended at Breckenridge and he should be able to help you.
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