PD gloves

[tiredpuppy]

Our daughter made some vibrating gloves for my HWP. He has only used them a few times with no response and finds an hour a bit long to wear them. How long does it usually take for any possible response to show up? I have never read what specific results people have, and hope people will share their experiences to encourage him. I know some people aren't helped at all. He has declined rapidly the last few months. Thanks.

[Ctime]

The standard protocol is two two hour sessions everyday. Unfortunately I do not think that using them intermittently for a short period of time is likely to bring much result but actually nobody has any idea. Or to be more accurate nobody has reported results in any sort of controlled setting that would answer your questions.

The studies at Stanford do suggest that there can be some immediate relief but the main point of the gloves is to provide long-lasting changes in the brain wiring.

What kind of gloves did your daughter build?

In general, if the PWP does not believe in the treatment, it is unlikely to bring great results in my opinion. The placebo effect in Parkinson's is huge and most things that make a difference take a considerable commitment. I find taking my drugs on time can be more difficult than working out! I'm very sorry your husband is discouraged. I would point out the love shown by your daughter in building the gloves and encourage him to exercise, adhere to strict medication, and to try the gloves everyday for longer and longer periods making sure to do something enjoyable while you're using them.

[tiredpuppy in reply to Ctime]

Thanks for your insight. His apathy is great, he can't tolerate C/L, his exercise has been PT or OT, but he is trying to do a little more at home. He is 80 and is tired of all the remedies I've learned about and had him try. I'm reading people's comments to him and he seems perked up a bit. Our daughter leaves tomorrow so that impetus will be gone. I appreciate this community a lot.

[pdbuzzboard]

concur with Ctime. When we first started on this adventure, my wife only made it to 1.5 hours twice per day. It took about 10 days to see any results. The goal is to desynchronize the brain. It takes a time commitment and consistency.

The New Year will start her second year on this protocol. We have maintained the initial reduction in meds and she continues to be essentially asymptomatic (which doesn’t mean she doesn’t need to continue meds, gloves and exercise.)

[tiredpuppy in reply to pdbuzzboard]

Thank you for responding again. It helps me to explain things to him and for him to know others have been helped. I believe my daughter corresponded with you. Thank you for guiding her.

[parknew in reply to pdbuzzboard]

I am interested. does this work for tremor? I have Tremor in my left hand and arm

[tiredpuppy in reply to parknew]

I imagine it's like everything else with Parkinsons. Everyone reacts differently to therapies. Read about vibrotactile gloves.

[pdbuzzboard in reply to parknew]

My wife had tremor in her left foot (primarily) and left hand prior to using the gloves. She is tremor free now. Your mileage may vary. It is worth running a search on YouTube for Dr. Peter Tass, Stanford University. He has a number of talks regarding the technology behind the gloves and what it is doing to address Parkinson's. He does a good job of explaining a pretty technical subject in a reasonably non-technical fashion.

[tiredpuppy in reply to pdbuzzboard]

Thanks for this. I need to do this too since I don't know the background.

[JayPwP in reply to pdbuzzboard]

Hi,

Has her gloves usage time reduced or stayed the same?

[pdbuzzboard in reply to JayPwP]

She started using them 1.5 hours twice per day (never made it to the 2 hours due to schedules). She ran at that level for about 6-7 months. From there she dropped to once per day. Currently she averages a little more than every other day. She could go longer as she doesn't have any symptoms that cause her to use them. I have a theory that the synchronization of the brain is one of the drivers of continued deterioration of the brain and cell death. Without going deep on mitochondrial health, I believe that keeping the brain desynchronized is key to slowing progression of the disease. As such, I encourage her to keep up on the protocol to maintain brain health.

[tiredpuppy in reply to pdbuzzboard]

My husband is up to 1 hour twice a day. Reading this encouraged him to keep trying to up it. Seeing that, if it works for him, it may be possible for him to reduce the time later on, made him smile! Thanks for sharing her story. What a blessing you are to her. And to many of us.

[parknew in reply to pdbuzzboard]

Same here. Mainly left hand, somewhat in the leg occasionally left side. I watched one talk already about the technology looks promising. I will be watching your videos to determine the technology needed. Can you point me to the video that is most up-to-date with the latest version of motors you have tried? Thank you for all that you do.

[pdbuzzboard in reply to parknew]

This is the video for the version she is running on. youtube.com/watch?v=W2gthMw...(Not working as expected?) The Digikey motors have shown a much higher reliability that the Amazon motors. Best of luck.

[Jlmsp in reply to pdbuzzboard]

What dose of car. Lev does she take?

[pdbuzzboard in reply to Jlmsp]

She takes 2x195 Rytary 3x per day. We discussed backing down her dosage, but she doesn't have any dyskinesia, so we decided to leave well enough alone.

[Jlmsp in reply to pdbuzzboard]

I am on simanet. It does not always work

[pdbuzzboard in reply to Jlmsp]

Rytary is a slow release version of Sinemet. As I understand it, Sinemet was followed by Sinemet CR (controlled release). That was followed by Rytary and there is a newer one still that claims even slower release. She also takes Ongentys (a COMT inhibitor) that slows the removal of dopamine from her system. I would encourage everyone on Sinemet to talk to their MDS about moving to a slow release CD/LD med.

[Logon206500]

I made 2 sets of pd buzzboard gloves. I was first using them one hour a day because any longer was putting me in a zen state of relaxation (sleep), it hadareducing affect on my rigidity after less than a week. After a year Ive reduced to 24 minutes every day. Gloves have really helped me. I also use Well red coronet 4 light helmet twice daily 24 minute sessions that really helps with slowness and anxiety. Never give up and stay positive!

[tiredpuppy in reply to Logon206500]

Thank you for your reply. Knowing how others have been helped is encouraging.

[parknew in reply to Logon206500]

How would you quantify on a scale of 1 to 10 The rigidity improvements

[Logon206500 in reply to parknew]

I would say a eight in improvement.