Parkinson gloves

[Rafiki2]

With the help of a friend, I have followed PD-dev's instructions on how to make the gloves used by Prof. Tass and my wife started using them 9 days ago. She does 1 hour twice a day.

In spite of the miraculous recovery experienced by the sikh gentleman Prof Tass treated, most of the patients treated with the gloves seem to take a few weeks to start feeling any improvements as shown in the graphs posted by Tass. Further benefits seem to take a few months, which is still very much worth the patience as these seem to be long lasting and with less and less use of the gloves.

If there are others out there that have also developed their own gloves and have started using them, would there be any interest in starting a new group or chain where we can start posting results? Perhaps we could call this the HMG (Home made gloves) group and would be interesting to share progress reports and tips.

So far, I have noticed a slight improvement in my wife's walk and she has started going to bed a little later than she has for the past several months. This might indicate that her levels of energy may also be improving. As I said, it is early days but there definitely seems to be something happening.

I wish to thank pd-dev once again for sharing his knowledge.

[Divii]

can you please put the link of hmg?

[Bolt_Upright]

I don't know if we need a specific group (sometimes it is better to be a little under the radar), and as the Broccoli Tea group has discovered, tracking results puts the individuals tracking the results in a potentially uncomfortable position.

I would suggest, and maybe even implore, people that are interested and/or knowledgeable about building gloves to join the existing meetings MBAnderson is nice enough to host. We already have more than a few people on that call experimenting with gloves. That way there is no "leader" on the gloves, just people sharing what they are trying.

us02web.zoom.us/j/833522248...

Thursdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)

Sundays, 11 am – 12 PM-ish, US CDT.

[WinnieThePoo in reply to Bolt_Upright]

Unfortunately there are several attempts to consolidate glove projects, and none seem to have universal coverage. Marc's meetings are lovely but ultimately another elite subgroup. That is discussions and information in the meeting are not shared with the general forum.

[Fed1000 in reply to WinnieThePoo]

Very right, I've always thought this.

[Rafiki2 in reply to Bolt_Upright]

Thanks for replying to my posting and sharing your views, especially from someone like you that is so active on this group and has contributed so much information.

I am not sure though that I agree with not sharing results on the gloves that people are making as this would inform us as to whether these type of gloves are working. And for those making them, it could be a valuable source of information on what works best based on these results.

What is the difference in posting results on medication, supplements or tips on PD and results on the gloves?

Maybe I'm missing something but could you please elaborate on what you said regarding putting individuals tracking these results in an "uncomfortable position".

As some of the graphs that Tass has posted in some of his interviews clearly demonstrate that it can take up to a number of months before some of the benefits are fully felt, by sharing any positive early results it would encourage people using them to be patient and positive and not give up on them too soon.

Finally, it is not always possible or convenient to join a zoom meeting, especially if one is in a totally different time zone or one needs to keep an eye on medications and meal times.

[Bolt_Upright in reply to Rafiki2]

I think that "sharing" what we are doing is great. Sharing about gloves is awesome.

I think I misunderstood your suggestion. Individuals sharing their results and what they are doing is great.

If you form a group, then that group has leadership. If the "group" is providing guidance, then the leadership of the group is potentially opening themselves up to liability.

I don't mean to be a wet blanket. I believe in sharing what we are trying and I think it is safe to post "I am doing this and I am getting these results". I have a blog where I do that (and I plan to start a page on gloves soon): rbd-pd-protocols.blogspot.com/

Thanks for sharing. I am really happy the gloves seem to be helping your wife. Good luck and may God bless you both.

[Rafiki2 in reply to Bolt_Upright]

Thanks Bolt, as I live in South Africa, I'll leave it to someone that is better placed in the USA or Europe and has easier and better access to information to form a group or start a platform where we can all post our various results based on the gloves that we are making.

I look forward to contributing and receiving information on the progress these gloves are making. Good luck to all of you that are making these gloves.

[WinnieThePoo]

You are in near enough the same time zone as me in south africa. the Sunday meetings are at 6PM. if i dont plan to attend , but do so casually it clashes with dinner or summer jacuzzi time. but not impossible to plan for it. i'm going to try to plan for next week.

as for a glove group, it seems silly to reinvent the wheel so, bb.f2heal.com/ , although poorly supported, seems the obvious candidate

[WinnieThePoo]

i would be particularly interested to learn of treatment times and results. I have commented elsewhere about our 4 hours is a long time to find. How many people are managing a regular 4 hours a day? And what results are they getting? Parkinsons is a maddening disease and I'm reluctant to draw short-term conclusions. While I have managed 4 hours a day Thursday Friday Saturday, and hour yesterday on Sunday so far, with very unsuitable gloves, that is much too little to draw any firm conclusions at the moment. However, for what it's worth, I have halved my daily sinemet on Saturday and Sunday, no longer have a bad neck ache when walking the dogs, and am otherwise as good as I've been . I was doing pretty well on regular medication any way. But 4 hours a day is a long time especially with a flaky pair of prototype gloves. I need to work on a more reliable robust and portable long-term system, and hopefully the parts will come next week

[Delaraysbest]

Has anyone heard of or scene any update on how Dr. Bhutani (the gentleman in the Tass video in 2018) is doing now 5 years later? This would be an incredible milestone to celebrate if he continued to maintain or improve further!

[cgreg in reply to Delaraysbest]

Mr. Bhutani completed the Ironman race in Florida several months ago. This was shown in a report in the Today show.