GLOVE BUZZ: THE LATEST ON THE PD VIBRATING GLOVES 7/12/2023

[Bolt_Upright]

GLOVE BUZZ: THE LATEST ON THE PD VIBRATING GLOVES pdoptimism.com/glove-buzz-t...

Nice little summary.

[LagLag37]

Thanks a bunch for the update! 🥊🙏

[Delaraysbest in reply to LagLag37]

Thank you. Would be nice to be a part of the trials. The speed of launching these trials is frustratingly slow.

[Alphasyn]

Thanks for the update!And if all the quite miracleous claims still stand after long term trials, let's make sure that they will be distributed for free to all Parkinsonians that need them..

[Buckholt in reply to Alphasyn]

I worry that anything originating from the US healthcare sector will cost $$$$$$.

[WinnieThePoo in reply to Buckholt]

I would have thought it pretty unlikely that anyone is going to make huge losses manufacturing gloves and giving them away. They are going to cost - although possibly that cost will be recoverable on insurance or state health care might pay. In France, we would have to buy them (or hire them)

We are guessing blind for the new Stanford glove, although Peter Tass promised it would be "affordable". The current glove being trialed by Synergic Medical Tech is going to be north of $3000 based on current component costs (8 tactors were on ebay for $2000 - ebay.com/itm/125937611094). Somewhere (but I can't now find where - probably in that really long thread by Snowski) I read the normal price of a c2 from Engineering acoustics is $300 - so $2400 for 8)

I would guess maybe $5000 retail price, unless there are significant savings in component cost at production volumes.

[Buckholt in reply to WinnieThePoo]

Hopefully they will licence the technology and allow a number of manufacturers to compete

[WinnieThePoo in reply to Buckholt]

It's a bit of a confused picture. On the face of it , Synergic's sale of the glove, would infringe patents held by Peter Tass and Stanford - so they might have to incorporate patent royalties as well as manufacturing costs. I doubt there will be much change out of $5000 for an approved set.

[Bolt_Upright]

It would be nice to know how the glove marathon success Kanwar Bhutani is doing now. Since the Today Show article in December there do not seem to be updates. today.com/health/news/parki...

[Manypony in reply to Bolt_Upright]

I’d like to see a follow up on the anecdotal reports also.

[WinnieThePoo in reply to Bolt_Upright]

It's worth bearing in mind that was Kanwar in December 2022. He first walked into Peter Tass clinic and started using the glove in 2018, 4 years previously. It's not like he started using it in 2022 and how is he getting on with something new.

[Bolt_Upright in reply to WinnieThePoo]

Great point.

[Ethin in reply to Bolt_Upright]

Plus, Tass also mentioned that Bhutani was doing the Ironman at some point during the last months.

[Fed1000 in reply to Bolt_Upright]

Kanwar Bhutani is a member of the Parkinson Association of Central Florida.

[Ksbhutani12]

Hello everyone this is Kanwar Bhutani. I’ve been using the gloves since 2018 and have a good quality of life. While it is not the silver bullet, I would attribute 25% to the glove for quality of life improvement. Reduced my medicine from 25 pills a day to 7. I don’t use the glove daily as it overstimulates me causing dyskinesia. I’m driving again and did the triathlon last October.

[Bolt_Upright in reply to Ksbhutani12]

Wow! Thank you so much for the update!

Now you have me curious about what you attribute the other 75% of your improvement to

Good luck and may God bless you.

[Ksbhutani12 in reply to Bolt_Upright]

Thanks. The other 75% is broken out by 50% exercise rigorous workout, 25% diet. Hope this helps thanks

[Bolt_Upright in reply to Ksbhutani12]

Thank you so much. Could you please share your diet?

Myself I am gluten and lectin free. I only eat ruminant meat (basically beef). I pretty much live on beef, eggs, pistachios, cheddar cheese, sour cream, onions, okra, and canned sardines and tuna (and Pepsi with real sugar).

[Ksbhutani12 in reply to Bolt_Upright]

Avoid dairy, all organics produce, walnuts, almonds, pistachios, Ensure at night for protein so it doesn't conflict with my medication. Breakfast usually oats, toast and fruit. Greens, lentils and beans during lunch and meat during dinner. I try to avoid inflammatory vegetables like tomatoes and okra. Hope this helps.

[Bolt_Upright in reply to Ksbhutani12]

Thank you so much. I searched and see that Okra is inflammatory and also anti-inflammatory. And Okra has lectins and is also maybe the best lectin binder to remove lectins from your body. Interesting.

totalshape.com/diet/natural...

Thank you. I will ponder this.

[WinnieThePoo in reply to Bolt_Upright]

Dave

There is always a context. You don't have PD, so don't take sinemet, so won't be interested in trying to keep protein content to night time, away from sinemet intake during the day(although there is protein in nuts and beans)

But I bet I could guess the answer Kanwar would give to the question "If you had to choose between giving up the gloves and eating a tomato a day which would you choose?" I doubt that answer would change that much if you made it a cheese and tomato pizza.

Your "stack" may be about to get bigger, but I doubt the whole stack can deliver an observable result comparable to the glove benefit, or, for chest-beating "no meds" newbies, comparable to sinemet.

So it helps to have a context...

Another interesting one would be "If you had to give the gloves back until FDA approval was granted, and it was possible to build a pair, would you be happy to wait for FDA approval, or would you want to build a pair?"

[cgreg in reply to Ksbhutani12]

It seems that the user profile page (of Kanwar Bhutani) no longer exists. Strange.

[Ksbhutani12 in reply to cgreg]

No I’m here

[cgreg in reply to Ksbhutani12]

Sorry, it disappeared for a while when I checked your profile. Maybe it was a technical glitch. Welcome and thank you for your inputs.

[LagLag37 in reply to Ksbhutani12]

Briefly, what exercises help you and what does your basic diet consist of? 🥊

[Ksbhutani12 in reply to LagLag37]

I do physical, occupational and speech therapy twice a week for each. 3 mile brisk walk in the mornings. 3 times a week in the gym doing weights that push my upper body backwards and lower body forward as PD patients tend to hunch. On weekends I bike 20 miles which I have found to be the most effective. Diet, I already shared in an earlier post

[LagLag37 in reply to Ksbhutani12]

I’m curious to know about your experience with the gloves. How did you get to be one of the first ones to try the gloves. I believe the video said you started having a big improvement right away. Did the improvements not last long? You mentioned above only having 25% improvement. Looking at the video it seems like it’s a lot bigger improvement. Are there any other improvements than your gait? It seems pretty cruel if they didn’t allow you to keep the gloves since you made such an improvement, enough to run a marathon. What are some of your thoughts? Is there anything we, PwP’s, can do to speed this process up? If it takes 2-3 yrs to complete the gloves for us to use there could be a lot of people get seriously worse or hurt before we get a chance to try them. This is cruel to get PwP’s so excited about something and then tell them its going to be years down the road before they can even try them. I guess most of it is about the money? Please give us some ideas on what we can do to help improve this system that gets our hopes up and then we come crashing down. So far Rock Steady Boxing is the only thing that has helped the largest amount of people. 🥊

[WinnieThePoo in reply to Ksbhutani12]

Looks like things are changing fast. You've added 5 pills since your interview on "Today". Why do you think that is?

[Ksbhutani12 in reply to WinnieThePoo]

No I haven’t still taking 2 medicines

[WinnieThePoo in reply to Ksbhutani12]

Ah yes. I take 2 medications. 7 tablets. Well 5 and a half atm

[WinnieThePoo in reply to Ksbhutani12]

Thank you for participating. This forum has had a few trolls and spammers over the years I've been a member, so I was cautious about just assuming you were the real deal. Hence the private message I sent you. It's been interesting to hear from you

[Fed1000 in reply to Ksbhutani12]

Only 25%? I expected more. Your performances and Dr. Tass have made a large Numbers of pwp dream. Thank you very much Kanwar. All the best.

[Ksbhutani12 in reply to Fed1000]

This is a SWAG, could be higher than 25%, but don't forget the gloves have given me other benefits such as sense of taste and smell partially back, less rigidity and reduced tremor and minimal off times, I arrived at the 25% because earlier this year, my glove stopped working for a month. During that time, my off times increased and I had to increase my medicine by 30% and I still struggled.

[Fed1000 in reply to Ksbhutani12]

Thanks for the clarification Kanwar, I feel more relieved. Myself, like many other pwp, we focus a lot on gloves that can improve the quality of our life, as it was for you. I hope that the gloves can be put on the market within a short time and that other countries besides the USA can also benefit from them. Please Kanwar if you have any other news about gloves to share it with us. Thank you so much. All the best

[Ed-shakes in reply to Ksbhutani12]

so were you allowed to keep using the gloves? I’ve DM Jimmy Choi who was part of the trial and he told me he had to return the gloves after a year. Thanks for dropping by to answer these questions!

[Ksbhutani12 in reply to Ed-shakes]

I was actually pretrial in 2018 as the 2nd patient so had a lot of one on one time with the doctor. Yes I have kept the gloves and still use them

[Bolt_Upright in reply to Ksbhutani12]

As you are new to this group, I'm letting you know that MBAnderson has been so kind to host Zoom meetings twice a week where people chat and strategize. It is nice. Everybody is welcome.

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.

[Fed1000 in reply to Bolt_Upright]

It’s a problem for the language and the time zone, excludes people. The gloves are interesting for all people.

[WinnieThePoo in reply to Fed1000]

The time zone is manageable if inconvenient. It's 6pm to 7.30pm on a Sunday {it's like right now}Unfortunately that's jacuzzi and cocktails hour chez Winnie the Poo, but it's not impossible.

But yes, it's native English speakers, and I agree that information should be shared with the whole forum.

Oh, and they talk a lot of brocoli tea in my experience

[Bolt_Upright in reply to WinnieThePoo]

Maybe we need somebody to start another Zoom call in a different language? I would join. Probably good to learn a new language.

[WinnieThePoo in reply to Bolt_Upright]

C'est toujours possible. Il y avait du monde au rencontre existant qui habite en france et parlent francais 😊

[Bolt_Upright in reply to WinnieThePoo]

Le français serait bien. Je pourrais essayer d'apprendre le français.

[WinnieThePoo in reply to Bolt_Upright]

Not bad Dave. A lot of promise

[cgreg in reply to WinnieThePoo]

Perhaps it would be a good idea to have Kanwar invited as a guest on NoSilverBullet by Michel so that all members of this forum can get a chance to get some information (as well as inspiration) from a famous PWP who has actually managed to reverse many of his PD symptoms.

[WinnieThePoo in reply to cgreg]

That would be good. I imagine he's a busy guy and needs to strike a balance. Never mind the gloves as someone facing this illness it's good to see somebody living life so well 20+ years in. It also encourages me to use my gloves fully

[Ed-shakes in reply to cgreg]

Definitely a great idea! Probably even better if the episode showcases all or more participants!

[WinnieThePoo in reply to Ed-shakes]

It would be good to get some advice, or shared experience regarding medication adjustment. I have backed off half a tablet on my 10/100 sinemet tds because of dyskinesia, but I think I need to go another half tablet.

[LagLag37 in reply to Ed-shakes]

Did Jimmy Choi get improvements from using the gloves? 🥊

[Ed-shakes in reply to LagLag37]

his answer is in the screenshot attached

A screenshot of an instagram comment by Jimmy Choi

[672943 in reply to Ksbhutani12]

Hi Kanwar, thanks for sharing.

I am surprised to hear your estimate. The Today Show segment made it seem like it was 100% the gloves that helped you. The segment doesn't even mention the other things it sounds like you were doing.

[curlscurls]

Thanks!!! Great to have info summarized and in one place. Didn't realize the Wash State bigger studies were detached from and a different company than Stanford.

Seems like maybe they go tired of waiting for Stanford to do a bigger proof of concept with a big enough pool. While Stanford's testing glove variations before doing a bigger study. I don't care for how Stanford says when studies will begin, but keeps pushing it back. Maybe now it will get moving faster?!

[cvahadji]

I participated in the Synergic trial. Double-blind; you get either the actual Tass protocol or a placebo for two months; then you get the other one for two months. Neither you nor the researcher knows which one you have. Then you get the real one, guaranteed, for two more months, and you can experiment with using the gloves less frequently. I got back my senses of smell and taste immediately in phase 2, and after about 6 weeks had better balance, gait and energy. BUT--it turned out that was the placebo! So now I'm using the gloves once a day instead of twice, but I can't assess the benefits.

BTW, I think Synergic may be looking for a few more participants IF they live on or near the west coast and can get to Eugene for the assessments. I live in Massachusetts and have traveled there twice, but don't have the time or money to keep on visiting the lab.

[672943 in reply to cvahadji]

Thanks so much for sharing all that. I'm just trying to understand--you started with the placebo (blinded) and that seemed to help?

[cvahadji in reply to 672943]

No, I started with the genuine Tass protocol but noticed nothing for two months. Then the day I switched to the placebo, I suddenly could taste and smell again. I therefore assumed that the first round was the placebo and the second one the real thing. But it's the other way around.

[672943 in reply to cvahadji]

That's an interesting result. Assuming they didn't have it backwards, it sounds like the placebo algorithm was more therapeutic for you. Makes me worried about their trial design.

[Ethin in reply to cvahadji]

Thank you for sharing your experience. -- Is it possible to say how the stimulation patterns of the placebo and the actual routine differed?

[cvahadji in reply to Ethin]

Hi Ethin. The one thing the researcher asked me not to discuss was the patterns! She said that if I did enough research online, I would be able to figure out which was which, but please not to compromise the study by doing that. And I guess she was right, in that the placebo apparently had a "placebo effect" on me! I'll just say that the two protocols were very different--one of them loud enough for other people to hear, and one rather quiet.

[Ethin in reply to cvahadji]

I understand -- though based on what Peter Tass has published, I have a strong hunch on whether the loud or quiet paradigm is the sham or real routine. 😀