I just wanted to share my experience of using an Electric Hand Massager.
One of my most annoying symptoms is the rigidity of my hands and their tendency to turn into claws (I'm struggling to straighten up my fingers in particular in the left hand). Like many PWPs, I also suffer from dystonia which makes it difficult for me to write, type, use cutlery et cetera.
I practice hand and writing exercises every day and my wife very kindly helps me in massaging my hands, all of which I think helps retain the brain connection.
I was looking for an additional solution to this and have bought this hand messenger that I find quite useful. It not only massages your hands but also can vibrate and heat them up. amazon.co.uk/dp/B08DRTTTVW/...
There is no silver bullet or miracle cure but I wanted to share this experience with the community in case it is useful to others. I would also welcome any suggestions from others as to how to train the hands.
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Michel0220
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Thank you very much Jeff, that’s very interesting. Can you possibly share more details about this device (maybe a picture - is it self-made or did you buy it)? Have you been using it for long ?
Vibration plates seem to be getting more interest so I have started using mine, which I have had for yrs. I use it for a range of exercises and also just stand on it twice a day for 5 or 6 mins at its highest (40Hz) setting. There is only a little evidence of small trials but suggestions are positive. It is allegedly good for overall fitness.
I also have quite tight hamstrings so do hamstring stretching exercises for a couple of mins and it seems to be helping already
This is a link to the manufacturer's website. They are available in a range of prices and designs now, some a simple base/platform. A good piece of kit esp if space is restricted.
Thank you very much PT. I used to have one in the past but I've mislaid it somewhere as I was moving from one country to another. It is definitely worth revisiting, thank you for the suggestion.
I am using the device on both hands, although I have a weakness on the left side. It does not create any problem of balance between left and right.
It is not designed for the feet and it does not fit properly, but I must confess I have been trying to use it for my toes. It does work to some extent, but it is not designed for this.
Dear Michel,I would suggest from experience that these symptoms respond not just to local treatment but also to general improvement of the Parkinson.
I developed curling toes in 2017-18 in my left leg. The foot pain and my immobilisation completely dominated my perception of the dystonia, picture so I noticed the claw fingers only recently. But it was there for a while.
When I started mannitol in 2018 and improved, the dystonia disappeared. Unfortunately it came back when I deteriorated during COVID. If your dystonia is caused by insufficient dopamine, then the location is determined in the brain by the map of dopamine deficiency. This is where all your Parkinson symptoms will manifest, rigidity and tremor first, later dystonia.
Therefore I would propose you also look into your general treatment strategies to see if you can maximise one of them. Such as, do you do high intensity training? Do you do enough of it? How do you exercise having rigidity and dystonia? Do you develop dystonia during/after exercise?
Can you increase your dose of mannitol? Increase your dose of vitamin B1? Meditation?
I read you bought one of the photomodulation device. Too bad we don't have access to visualising our mitochondria so we could know if they are ill, individually, and if they benefit of the photo modulation for example. I believe in it and I look forward to use it as well. With the mitochondria in mind, I would also recommend you coQ10 high dose.
Are you taking CDP-choline and n-acetyl-cystein? At the right dose?
You mentioned hamds' exercise. What exercises are you doing? If you do those recommended for hand tremor, I would enhance them with resistance.
Cinnamon?
I must say I recently got my eye also on hyperbaric oxygen therapy and on the gyro-kinetic method. In 2018, I visited in Israel and booked a Airbnb room. When the host heard I had Parkinson, she told me one of her past guests also had Parkinson. He came from South Africa to participate to classes of the gyro-kinetic method and he was significantly improved even before the end of his stay, according to her. It does have a community of fans. The method does address a way to make peace but it goes beyond. I watched last night their YouTube video (Goodbye Parkinson's, hello life). I think it's worth a try.
Finally, I have to say, is it still time to avoid levodopa? Assuming it is neurotoxic and worsening the progression of PD, it does also help by giving you the chance to better exercise and experience less suffering, it releases time to actually do things. Also, managing the dose is in your hands, so you don't have to increase the dose beyond the limits you put yourself.
Otherwise, I have been offered DBS recently. It is the general opinion among neurologists these days you should do it earlier rather than later.
Thank you very much for your response and advice, which is hugely appreciated.
I totally agree with you that hand rigidity responds not just to local treatment but also to general improvement of Parkinson's. To that extent, the hand massager is only an additional help.I do most of the things that you mention in your message (mannitol, HDT, cinnamon, COQ10, small doses Sinemet, meditation, lots of intense exercise, hand exercises based on the dystonia recovery program of Dr Farah, etc) and I was particularly interested by your comments on the gyro-kinetic method. I have watched the video on YouTube and will seek more information about this.
Thanking you again for spending the time to put together such a comprehensive reply.
Hello Michel. My pennies worth - for me free weights have made a big difference: before I felt that I was losing the connection between my brain and hands and brain and arms. It was an odd sensation of disconnect. Press-ups have also been a game changer in terms of keeping the intent and follow-through smooth and, importantly for me, my hands splayed and taking the weight slowly, not rushed. And finally, before I get up, I push the tips of my fingers into each other, forming a vaulted prayer 🙏 shape, pressured.
Thank you very much WB. I do free weight exercises several times a week and agree that it helps. Below is a video link to exercises that I found useful too. youtu.be/Ez2GeaMa4c8
I thought you might have tried it all! The video came up with an error message and “try again later”, which I will do.We live in Putney (Campion Road), so if you ever feel like a walk on Wimbledon Common, or a coffee in the village, let me know.
I have reloaded the video correctly, sorry for this. Thank you very much for the invitation, I will keep it in mind next time I'm in London (I now live in Oxford!). 😀
Many and big changes for you in the first year of diagnosis, eyeballing that critter, Parkinson’s! A shame that you are no longer local but be happy and I look forward to more No Silver Bullet webinars. PS Do you still consult the Leaders? I did a three day seminar with them but it was rather chaotic, so I didn’t take it further. They are very sweet though and I felt guilty.
Thanks for sharing. I have a battery operated massager that helps with rigidity in my right hand and foot. It relieves cramping and lifting of my big toe and cupping of my right hand.
Do you have any idea of frequency? In the articles I read on 40 hz flickering light; The researchers settled on 40 hz as trying to reset the natural frequency of the brain. I quit with it because I was having very vivid dreams. Which wasn’t bad when I was dancing with blue smurfs it was unread enough that it didn’t affect my reality, but when the dreams were interacting with people I knew & the dreams started affect my reality I quit. Some articles were using 40 hz light, sound and vibration. Oh, I did set my laptop refresh rate to 40 hz and it is still that way (over a year). And I have never notice and effect on my Parkinson’s.
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