Share your secrets - physical disability and ski gear

[lisamamot]

I would love to crowd source here with anyone that has experience with sleuthing-out gear for those with physical disabilities.

My 21yo son (6'/200#) has hemiparesis/hemiplegia resulting from a brain tumor when he was 4 1/2. His prognosis is excellent, but he had a post surgical stroke that left him with reduced use of his left leg and arm, and no use of left hand. He lost left peripheral vision in both eyes (70 degree visual field) from the pressure of the tumor on his optic nerves.

He wants to be as self sufficient as possible and as such, we are always in search of innovative products. With the use of one hand, threading zippers is a huge PITA for him, and due to the contraction/curling in his left hand, getting a traditional mitten on his left hand is a two person process, often involving sweat and cursing on both our parts, lol.

Here are some items we have purchased or are looking into, but I would love to hear from others!

Jacket

• Burton GORE-TEX Pillowline Anorak. We just got this for him for Christmas, and while he hasn't skied in it yet, I am super excited about it. It unzips pretty high up the side for easy entry/exit and seems burly enough to withstand whatever he throws at it. https://www.burton.com/us/en/p/mens-burton-gore-tex-pillowline-anorak-jacket/W22-227361.html

Mittens

• We haven't tried these yet, but I have an email into the company to make sure they don't have internal fingers stitched into the finger portion. If they don't they may eliminate one of the scourges of our existence. https://frdmgear.com/products/evolve-snow-mitt?variant=41123686416558

 

[migdriver]

A suggestion: give a call to Achieve Tahoe located at Alpine Meadows ( Palisades Tahoe ). Achieve runs programs dedicated to skiers / riders with disabilities of all ages and may be able to point you in the right direction for any clothing/ soft or hard goods which will work . They have an office at the base of Alpine by the Subway chair. You should be able to reach them through the Palisades Tahoe resort switchboard or via the Admin offices. Good luck

 

[Bienski]

Another suggestion. An organization in MN has an amazing adaptive ski program, in addition to a full array of services that address people with physical challenges. I have also heard (not confirmed) that they have people who can rework clothing to better accommodate peoples needs. Can be contacted at couragecenter.org Also, best of luck.

 

[lisamamot]

Thank you @migdriver and @Bienski for your recommendations. I will actually be in Palisades Tahoe in another month or so; perhaps I will look up Achieve Tahoe and stop in and see what suggestions they may be able to provide.. My son has skied with numerous adaptive programs, both in the east and the west; I will reach out to a couple of them as well to see if they have lists of gear to share.

 

[Lauren]

He wants to be as self sufficient as possible and as such, we are always in search of innovative products. With the use of one hand, threading zippers is a huge PITA for him, and due to the contraction/curling in his left hand, getting a traditional mitten on his left hand is a two person process, often involving sweat and cursing on both our parts, lol.

Though my father hasn't skied since he had a stroke, he enjoys time outdoors even in the winter. He also enjoys being self sufficient, and is extremely stubborn about it. With the use of one hand, he often doesn't fully unzip jackets...leaves the last couple inches zipped and slips them over his head. I think an Anorak will be perfect. Plus they're coming back into style!

For mittens, my father has always (since losing function of his right hand) used a leather "work-style" mitten on that hand (sometimes sized up for ease of putting it on), then will wear a glove on his other hand for extra dexterity. Something like this for the right hand:

This might be a pricey experiment but Astis mitts are what comes to my mind for big, roomy, easy to get on mittens (at least their long cuff one's are)...And, if he's not into the fur and tassels...they make mid-cuff mittens that might work well for him: https://www.astis.com/collections/mid-cuff/products/griggs

 

[lisamamot]

Though my father hasn't skied since he had a stroke, he enjoys time outdoors even in the winter. He also enjoys being self sufficient, and is extremely stubborn about it. With the use of one hand, he often doesn't fully unzip jackets...leaves the last couple inches zipped and slips them over his head. I think an Anorak will be perfect. Plus they're coming back into style!

For mittens, my father has always (since losing function of his right hand) used a leather "work-style" mitten on that hand (sometimes sized up for ease of putting it on), then will wear a glove on his other hand for extra dexterity. Something like this for the right hand:

This might be a pricey experiment but Astis mitts are what comes to my mind for big, roomy, easy to get on mittens (at least their long cuff one's are)...And, if he's not into the fur and tassels...they make mid-cuff mittens that might work well for him: https://www.astis.com/collections/mid-cuff/products/griggs

Great point about not unzipping all the way! With around town jackets and zippered hoodies my son chooses to skip the zippering altogether. Fine for that purpose, but skiing not so much!

Yes, my son wears a mitten on his left (non- functioning) hand and a glove on his right. I don’t recall if your dad’s hand is contracted or not. The extreme contraction of the fingers, and curling of the wrist, is what makes it so difficult to get his left hand into a traditional mitten.

 

[Lauren]

I don’t recall if your dad’s hand is contracted or not. The extreme contraction of the fingers, and curling of the wrist, is what makes it so difficult to get his left hand into a traditional mitten.

It is and has gotten worse over the years. Definitely makes it tough for anything to slip over without being excessively big. I’ll ask him what he’s using for mittens these days, but I know it was a big, leather mitt for a many years that seemed to work well for him.

 

[oldschoolskier]

Seriously consider sports. Swimming is a great one as the Para organization once you are in is fantastic. The access as he progresses give you a lot insight in how to deal with the disability. I have been very directly involved with the sport at a high level (national and international). The second benefit of sports you get to meet people that have similar issues and their solutions and resources they use (you are not alone).

Finding the initial club to take him will be the issue. (I suspect this is true of all sports, and sorry can't comment too much about skiing).

How do I know, my son has an intellectual one brain injury (10%) prior to birth (cause unknown), see some of my other posts in this.

BTW the clenching of the hand is a CP (cerebral palsy) issue (yes you see it in my son too very mildly) it is called fisting and likely effects other muscle groups as well.

Now solutions, the brain does heal (very slowly) so don't let anyone tell you otherwise. How do you make it heal... a lot if blood sweat and tears, so he has to want this not you.

The second is consider a true KETO diet, doctor followed one as they can be very dangerous at the extreme you require (not to mention expensive food wise and bland until you figure out how to cook, more blood sweat and tears). Our son (23) did this for 5 years and just got off this past year (stepped away from a therapeutic diet) take my word for it, competitive Para swimmer 4000+ calories a day on no carbs is tough and expensive and into that travelling even harder (see previous posts). What this diet does is several thing, help in brain healling (hopefully improve muscle control as a side product), cognitive improvement (brain injury always has side issue) and seizure control (brain injury).

So as a fellow parent in this type of situation I understand, breath deep, relax there is always a solution.

 

[LiquidFeet]

@lisamamot, how about light-weight mittens without any stiff leather on them? These look like they will bend easily into whatever configuration his hand needs. I think they don't have the finger pockets, which is good. And the wrist entry looks like it can be opened up and made wide.

https://www.prolitegear.com/product/mountain-hardwear-absolute-zero-mitten/
Here's a review.
https://mountainculturegroup.com/honest-review-mountain-hardwear-absolute-zero-mitts/

 

[LiquidFeet]

@lisamamot, here's another mitten that's open on the inside and pre-curved. I'm guessing that the wrist entry area needs to be wide, but this one may have a narrower opening than does the one above. This one may be stiffer, not sure.

https://arctica.com/product/arctica-pow-mitten/

 

[LiquidFeet]

... and one more. Look for "articulated" if you want mittens that are pre-curved. These mittens have a very wide cuff, then elastic right at the wrist.

Outdoor Research Alti Mittens​

Outdoor Research Alti Mitts

DescriptionBuilt for 8,000-meter peaks and Arctic expeditions – stay warm, protected and focused on the terrain in the Alti Mitts. Constructed with breathable and waterproof Gore-Tex, highloft Moonlite Pile™ fleece, PrimaLoft® Gold Insulation, removable liners layer on protection while durable...

parabellumprime.com

 

[crgildart]

I'm going to invite @Jay Marcoux to the white courtesy phone here. There's a race coach at Appalachian I met about 3-4 years ago who was in similar condition getting his ski legs back post stroke. Very limited use of half his body. Really nice guy. I can't remember his name but I remember at first thinking it was weird that he was wearing the resort ski school jacket but skiing on really short junior park skis. Then he started telling me about his stroke and returning to work there with the new challenges. Said that was what was easiest ski for him to manage at that time. Jay works at the same place. I'd love to hear that guy is still there but if not, I can verify that people with those challenges can and do ski.

 

[Lauren]

The extreme contraction of the fingers, and curling of the wrist, is what makes it so difficult to get his left hand into a traditional mitten.

So I asked what mittens he’s using these days…currently using a double fleece mitten (that my mom bought at a local craft fair). It has an elastic cuff and he’s able to put it on by himself (which is why he likes it).

I could see a fleece mitten with a shell over mitt (like this) working well for skiing. Super loose and easy to slide on, but he could synch down the strap on the over mitt so it stays on better.

 

[lisamamot]

Seriously consider sports. Swimming is a great one as the Para organization once you are in is fantastic. The access as he progresses give you a lot insight in how to deal with the disability. I have been very directly involved with the sport at a high level (national and international). The second benefit of sports you get to meet people that have similar issues and their solutions and resources they use (you are not alone).

Finding the initial club to take him will be the issue. (I suspect this is true of all sports, and sorry can't comment too much about skiing).

How do I know, my son has an intellectual one brain injury (10%) prior to birth (cause unknown), see some of my other posts in this.

BTW the clenching of the hand is a CP (cerebral palsy) issue (yes you see it in my son too very mildly) it is called fisting and likely effects other muscle groups as well.

Now solutions, the brain does heal (very slowly) so don't let anyone tell you otherwise. How do you make it heal... a lot if blood sweat and tears, so he has to want this not you.

The second is consider a true KETO diet, doctor followed one as they can be very dangerous at the extreme you require (not to mention expensive food wise and bland until you figure out how to cook, more blood sweat and tears). Our son (23) did this for 5 years and just got off this past year (stepped away from a therapeutic diet) take my word for it, competitive Para swimmer 4000+ calories a day on no carbs is tough and expensive and into that travelling even harder (see previous posts). What this diet does is several thing, help in brain healling (hopefully improve muscle control as a side product), cognitive improvement (brain injury always has side issue) and seizure control (brain injury).

So as a fellow parent in this type of situation I understand, breath deep, relax there is always a solution.

My son has had his disability for 17 years now so we are pretty savvy about his diagnosis/prognosis and recovery. He was initially completely paralyzed on his left side and his neurosurgeon was spot-on when he said that at about 6 months out we would have a good idea of what function our son would recover. His seizures are well controlled with medication.

We did PT for many years, and tried all sorts of devices/braces to help him regain function and attempt to keep his left hand/wrist in a functional position. He also did Botox injections in his arm and leg for years with an amazing doctor who runs a cerebral palsy clinic (Children's Boston and Spaulding Rehab) so we are familiar with the clenching and how similar some of his physical issues are to those experienced by cerebral palsy patients.

It is wonderful that swimming made a difference in your son's life. We would have loved our son to develop a passion there, but he has not. He enjoys skiing and while he doesn't ski often, I am on a mission to find outwear/accessories that makes his life easier while also helping him be more self sufficient.

 

[lisamamot]

@LiquidFeet - than you for the sleuthing. Yes, the entry needs to be wide plus we try to straighten his fingers as much as possible once in the mitten so they aren't just a total fist. He stretches his left hand on the way to the mountain to help further the attempt. He has been wearing an older The North Face Montana Mitt on his left and the Montana Glove on on his right; the older model he has does not have the finger separation in the newer model. Getting him into these, or any traditional mitten, is a huge challenge which is why the one with the zipper sounds so promising.

Men's Ski Mittens | REI Co-op

Shop for Men's Ski Mittens at REI - FREE SHIPPING With $50 minimum purchase. Curbside Pickup Available NOW! 100% Satisfaction Guarantee

www.rei.com

 

[Lauren]

one with the zipper sounds so promising.

I’ll be interested to hear how he likes them once he tries them out! They are definitely intriguing.

 

[lisamamot]

I’ll be interested to hear how he likes them once he tries them out! They are definitely intriguing.

Funny, I don't believe I ever received an email answer back! I just forwarded them my email from January, lol.

We have an appt at Richelsen's Feet First next weekend for him to start the boot process. Fingers crossed!

I suspect new skis may be necessary as well; if new boots change the BSL too much we likely cannot remount the skis he has due to that lift plate under his left binding - too many holes! We are actually toying with the idea of removing the lift altogether- while we were trying to be helpful it has been suggested that since he is has accommodated to the leg length discrepancy in the rest of his life, we may not want to correct it on his skis. This would open up the ability to put him in a GW boot which would be great for him.

Soooo, friendly daily driver? He is currently on the Rossignol Experience 84 170. Not too concerned about the length - we undersized him since it is harder for him to control the left ski and we didn't want to overwhelm him.

I am not well versed on men's skis, but was thinking about the Nordica Navigator 85 - with his specs (6', close to 200#) most would say he needs the 179, but I wasn't sure if we could get away with the 172 for him. He sticks to green/blue groomers, but the surfier front end on the Navigator may help when things get a little less smooth.

 

[LiquidFeet]

Your son is so lucky to have you campaigning for his success with ski gear. Getting the right ski gear can be a challenging task for many skiers. It sounds like it's especially challenging for you and him.

You've got this! And he's got you!

 

[lisamamot]

Your son is so lucky to have you campaigning for his success with ski gear. Getting the right ski gear can be a challenging task for many skiers. It sounds like it's especially challenging for you and him.

You've got this! And he's got you!

Thank you so much for your sweet support. So glad we traveled up to Plymouth today - he had a great boot analysis today and we have a short list of boots to try on and once we narrow it to what we feel works best we will return for the boot fitting.

9 year old 75 flex boots are beyond needing to be replaced! I expect him to really feel so much more secure this season.

 

[ilovepugs]

I’m sorry I don’t have any directly helpful ideas at the moment, but have you reached out to Maine Adaptive for suggestions and resources? What’s your timeline for purchase?

I probably won’t be able to talk to anyone about it sooner, but on-snow training for Vermont Adaptive coaches starts in mid-December and I can certainly ask for tricks and tips for fitting equipment and clothing. Or heck, maybe bring him up for a lesson (you guys can stay with us) and the experts can work directly with him!