Towards the end of last year I was chatting privately with a forum friend, and noting that my pd had worsened and I needed the gloves to maintain my quality of life. He was glad I had that solution but also was glad his condition was still well managed with moderate levels of conventional meds.My response at the time was
"it's not THAT bad. I'm still skiing black runs"
At the time there was an element of bravado to that. Tbh I wasn't sure just how it would be
This week we finally got some decent snow and I went skiing with my wife and a friend
I'm still skiing black runs 😎
Written by
WinnieThePoo
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I was skiing black runs long before the gloves came along. But yes, if the gloves weren't here then I would have needed something else. I have progressed to only 2 hours a day mostly and got much better at getting the gloves/medication mix right. I think I got it spot on for yesterday's skiing
I have posted lots on the subject. I am working on a Mk5 glove (probably in February) and will post pictures when its done. See my "glovemaking for fun"
This gives me hope, I’m on a ski holiday now with the fam but nervous as to how I’ll cope with what feels like jelly legs! I’m 66, been skiing since a teenager but fast losing confidence, I’d be happy to manage a green run ⛷️⛷️⛷️ Positive mental attitude and plenty of C/L…… Well done WinnieThePoo on a black run!!
It's a 2 hour drive to the resort, and my left leg went numb and "parkie" for the 2nd hour of the journey. But I walked it off when we got there. I had to be very "conscious" of my left leg, making right turns, but went back to basics and worked on good technique. Started with a couple of greens, then a lot of technique work on 2 fabulous wide, well-pisted, light traffic reds, before the iffy blue and short black back to the resort.
Great to hear! And reminds me of how people can't believe that I am still playing tennis as if nothing is wrong with me... and as soon as the ball is not in play, the bradykinesia kicks in... unless I do some 'voluntary shaking' with my arm! Wonder if a glove could help as well, especially before playing as a kind of precaution?
I have reffered to the mk5 glove a few times. There are a lot of small detail changes to improve convenience and robustness but the main change is to a much smaller exciter and consequently smaller housing
First of all it makes me happy to hear how good your condition became through the gloves. As my father also has PD i was researching for this gloves also and so i am happy to hear from someoneü latest news about that the gloves help, as in the previous posts there wasn't activity anymore in the last 5 months.Enjoy your holidays and i wish the same good results to everyone who has PD hopefully with advanced AI someday PD will be cured totally.
Grest post (I’ve never been skilled enough to ski the black runs)! I am having a good experience with my home made gloves also…my ON time is higher quality for sure. My OFF time, on the other hand, is highly akinetic…have you noticed any OFF.time changes? Ideas for managing?
I'm not sure I have really experienced on and off times as others describe them. I have times when I suffer symptoms and times when I hardly notice any. But there is no regular pattern to them, even though I take my meds and ear my meals at fixed times.I have noticed it is possible to over medicate in aggregate, and for me that results in mild dyskenesia, then numbness in my right wrist then painful dystonia.
At my stage (more than 5 months at 4 hours a day), there is a lag in response to changing glove time, so I "tune" by varying my sinemet intake.
I am currently down to 2 hours a day glove time (most days) and targeting 2 hours twice a week
What design of glove do you have? How much do you use them? How long have you had PD?
My glove is based on the “buzzah board” style w 10mm square tactors achieving the 250 hz intensity with randomization. Tactors are set in open cell foam within a 3D printed holder plus a focusing bead to create z axis displacement. Attached w Velcro & elastic.
Had a slightly different set (8mm) w lesser integrity and looser fit from late June to December. Upgraded to the 10mm on 12/20. 4 hrs per day though early January then breakage forced a week off. Returned last week w 4 hrs per day. Feels great, when I’m on, I can walk. When I’m off, I can’t sit straight because of dystonia in my upper back. Diagnosed in Jan 2020.
Thanks for the details. I'm currently in the design phase for building a set based on the Buzzah! design with the 10mm Vybronics LRA. I'm designing the tactor housing and stuck on how to calibrate it to get 0.5mm pre-compression of the skin. How have you calibrated that? Do you have a .stl file of the tactor housing you can share? Thanks!
I am going to be the voice of reason here, Maybe there is a new exciting hobby for WinnieThePoo that doesn't present the risk of even greater brain injury. I remember thinking this after my last ski run, driving back home with my kids and my wife with ten stitches on my forehead and a broken shoulder. That was 9 years ago. I found that letting go of the pre - PD bravado was a good adjustment. Now when we go skiing I exercise in the gym, read and go snowshoeing. If you need a bit more excitement try a snowmobile excursion. It is a great way to enjoy winter and the mountains.
I have posted fairly detailed descriptions of the glove making on this forum, and I have already shared my pattern files, and STL's for 3d printing with a handful of others, some of whom are working on a more compact and efficient "controller" arrangement. I am sure they will share in due course. And I plan to do a detailed post about my Mk5 construction, if I ever get them built (February hopefully)
congratulations to you! Wonderful post. I just have one question: clearly the gloves hope your symptoms, but do you think they also are slowing down the progression of the disease in general? 🤔
I don't know about disease progression. With a sample of n=1 I have nothing to reference it against. My disease clearly had progressed over the last 18 months, and I am able to manage it better with a combination of gloves and adjusted medication. But it was a patchwork experience and evolving the gloves and my approach to the therapy, and at least some of the apparant effects may well be coincidence. Next year will (hopefully) be a more stable experience.
One thing I can promise you, is that 4 hours a day for at least 4 months is an enormous commitment, and not at all easy to do. But I think its been worth it
Hello, I am really surprised at your success with your homemade gloves. It gives me lots of hope waiting for Prof. Tass's response for a possible participation in the European trials of his gloves. By the way, are you thinking of commercialising your own gloves? I would be very interested in having a try at them because I might wait for a longer time before the acceptance of Tass's gloves by the FDA or the European Agency of meds...
If I were skilled with my hands, I'd try building some but as we say in French, "J'ai deux mains gauches", unlike you, I suppose.
If you ever come and go skiing to Switzerland, we could discuss it. I am Swiss and my mother tongue is French.
I am not thinking of commercialising my gloves, partly because the route I have used is very "home made" and also due to patent applications by Stanford. I am aware of several individuals looking to use my concept and produce more "commercial" or "professional" versions and I am sure they will announce details of those when ready. And there are a couple of other groups who were working on audio exciter solutions before that - also making progress towards a "launch"
Construction is much less difficult than you imagine. I am happy to supply STL's for the 3D printing which you can easily have printed by commercial printers. Likewise I am happy to supply either the .ac3 Dolby 5.1 file I use, or a 4 channel .wav file. I am working on a Mk5 version once January is out of the way (January is a very busy month at work for me). I intend to try to produce a revised comprehensive explanation of how I build them then, maybe with some videos. The hardest part is probably the sewing
I'd love to ski Switzerland, but I would have to save up. I intend to ski the alps again one day, but I love skiing the Pyrennees for the moment.
When you say the hardest part is the sewing is it because of the material? The “gloves” I am trialing are made from the thinnest ( neoprene?) I’ve ever seen. It looks like an easy fabric to cut and sew. Then of course all the Velcro!!
congratulations! It’s always encouraging to read about people’s successes especially when they are about activities they enjoyed pre-PD. I Hope to hit the slopes myself this season after a three year hiatus in part because of PD. Hope to descend a black run as in the old days but just being out there will be considered a success.
Great to hear you are getting out. I find skiing an amazing distraction. For me the right mix of sustained effort, concentration and excitement to push through the PD! Picture is me, this January, (3 years post diagnosis) in 11 in (27 cm) of powder, in a nice tree run. What could possibly go wrong, right!? 😨😂
If I crash, I finally have time to build my gloves.
Fabulous. I'd love to ski powder like that. Right now I'd love to ski at all. We're having a global warming snow crisis. I'm hoping it will change for February, after I get all my 31 January tax returns in
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