FreedomWavePD gloves working.

[CBailey11]

I started building my Parkinson's gloves last November. Unfortunately I'm a bit of a perfectionist and my spare time has been extremely limited so I somewhat finished them in July. Since then, the biggest challenge was getting my mother in law to wear them. While she has yet to actually wear them twice in the same day, there have definitely been noticeable improvements. When she wore them once for an hour, she was almost immediately better, eating herself with little difficulty. She then didn't wear them for a week and she declined back to where she was. She has since worn them for 60-90 minutes most days. She's not up dancing, which frankly I was hoping/expecting. Then again, she's 78. Since wearing the gloves, these are what we observed:

She 'freezes' much less, if at all.

She can eat by herself. She actually will get up and make herself food.

She used to slump badly to one side in the chair, which she doesn't do anymore.

She was hallucinating pretty badly. Cognitively, she is MUCH better. No hallucinations, much more like she was 10 years ago.

Before the gloves, she would usually spend 100% of her time sitting in her recliner when an aide was not around to help her up. She would urinate in a pull-up. Now, she gets up on her own when nobody is around and goes to the bathroom herself.

She used to need multiple tries to get to a standing position. Now she does it in one attempt.

She is now reliably taking her insulin and medications.

I'm very encouraged by her progress. There are a lot of tweaks and modifications I intend to do on the gloves, hoping for even more progress. The code is done just barely enough to be functional, but I'm going to add a menu to be able to modify every possible variable. The schematic is finished and uploaded to the Github. I'm currently working on a PCB, then Youtube videos with complete instruction on how a non-technical person can assemble one of these. I'm hoping to have the PCB in 3 weeks, with another 2 for instructions and complete details.

[dadcor]

Great! God bless you!

[Farooqji]

Thanks for sharing

[JayPwP]

Thanks. Eagerly waiting for your videos

[Jones2023]

Great, Praise the Lord!

[Erniediaz1018]

great thanks for sharing. God bless waiting for the videos.

[WinnieThePoo]

Sounds good. Are you using the Dayton exciter?

[CBailey11 in reply to WinnieThePoo]

It's on my to-do list, somewhere after I finish the PCB. I'm currently just using LRA vibrators stuck to velcro fingertips. There is a LOT of room for improvement there. The vibrators vibrate the velcro more than the fingers. Still, they are working. This is one of the things I want to implement eventually, hoping for even better results. In addition to good actuators, I want to implement another idea I have that will be better than what I have, not as good as the Dayton exciter, but not require 3d printing to make it easier for anyone to make these.

[Gioc in reply to CBailey11]

Congratulations, some great successes consistent with the context of the PD.

You say: “The vibrators vibrate the velcro more than the fingers. Still, they are working”

So why change something that works well with good results with PD symptoms. Whatever exciter has that problem when fixed with Velcro to the fingers, it is the base that makes the difference, the more stable is the better.

because of this boxes on the fingers are so thick, they are an attempt to stabilize the exciters and turn up the intensity.

In a futile attempt to make the base as firm as possible, these cubes on the fingers become increasingly larger and heavier until the glove becomes useless.

Personally I would find it more practical to apply vibrators to another part of the body, for example using shoes, even for easier use.

[CBailey11 in reply to Gioc]

Well, I never liked what I did with the actuators. I mainly copied pictures of Dr. Tass's gloves. My improvement idea is to cut/melt holes in the velcro the size of the LRA's, put the LRA's in the hole (They are about the same thickness as the doubled up velcro I'm using), and use some spandex/elastic on the outside-facing hole. This way, the LRA is mounted ON the spandex/elastic, doesn't touch the velcro, and has more energy to put into the fingertip, eliminating cross-finger vibrations. I'm hoping to do something similar with a 3D printed slim box that goes on the fingertip. I still feel like whatever we do is going to be awkward. For these to be practical, the patient needs to be able to put them on themselves. My mother-in-law has an aide that puts them on her. I'd like them to be as easy as regular gloves to put on.

[Gioc in reply to CBailey11]

Tass is also reviewing its gloves in this sense.



Incidentally, Tass explained why he used fingers, because they are little more sensitive to touch, but also with other parts of the body it might work.

[Gioc in reply to CBailey11]

Only you can know how good your work is, but the critical spirit with which you check it demonstrates intelligence and honesty. To make comparisons you have to imagine an “ideal model” to aim for and define its characteristics, otherwise you risk being excessively self-critical, which could ruin your artwork, so very well done.

My ideal model must give results and be easy to apply and use.

I assure you that the successes you have described are very valid and contextual, I am a PD patient and we PWPs immediately understand if there are "irons in the fire" as you can see from the answers.

Gretings from Italy to you and your mother-in-law .😀

[Gioc in reply to Gioc]

Ideal glove

youtu.be/uDxJkMrYjI0?si=GRz...(Not working as expected?)

Ideal glove

[WinnieThePoo in reply to CBailey11]

It's a fine ambition, but careful not to throw the baby out with the bathwater. I can (and do) put on and take off my gloves solo. It's not easy, and I doubt your mother-in-law would manage it.

And they are awkward to wear. Although I do a fair bit more wearing them now than I used to be able to do

I think it is a wonderful thing to want to innovate, but I would want to properly understand the subject, in the way that Dr Tass does, before branching out into new ideas.

We are working on a couple of enhancements - and now my wife has the bit between her teeth, having seen the results, and is talking about starting from scratch on a Mk5 glove (which won't involve me - the electronics and mechanics will remain the same, it's the haberdashery that may change)

What I want is a glove that works, for me, and anyone trying it. I don't want to show Stanford how it could be built better, and cheaper. Because it risks producing a slicker, more convenient, less expensive. .. and less effective gloves.

[MBAnderson]

Results as good as surgery.

[cgreg]

CBailey11, thank you so much for being so generous with your time, expertise, and personal experience with the gloves. It gives all of us PD patients the hope to carry on the fight.

[SAGoodman]

Awesome results! Look forward to the videos

[CBailey11]

Thanks for all the comments! Also, in the actuator side of things, I came across this:

youtube.com/watch?v=wrnBW0H...(Not working as expected?)

Using this type of construction allows cheap, professional, custom actuators. This might allow a non-technical person to simply order the custom actuators. I'm hoping to have time to experiment after the PCB and code are done.

[busters_dad in reply to CBailey11]

I saw this video while doing some searching. Very exciting! I think they are similar to the Tectonics but using PCB coils instead of plain wires. Also he seems to be targeting maximum displacement for certain use cases. We probably don't need that much displacement. I think the surface area of the actuator surface could be quite small. So maybe a PCB coil with a very small magnet sitting in a thin slice of plastic with a hole for the magnet to travel up and down in. Could be held in place with a thin sheet of rubber. We only need to make the magnet "jump" a small amount at 250hz.

[Pixelpixie]

As a non-mechanical engineer, I’m grateful you’re willing to guide us!

[Squash1]

Thank you very much for your work on these gloves, and for your willingness to publish both the process and results - I look forward to hearing more, and thanks again....

[Bluebell2022]

That sounds great! Looking forward to the utube videos as I am non tech!!

[Gratitude60]

Absolutely amazing!!! Please post updates.

[AGH_1966]

Very grateful to you for this (even if it doesn't work!)

[gurdeep11]

I am Glad to hear about progress of your mother-in-law. With your inspiring story, I feel one should go ahead and take matters in own hands rather than waiting for the gloves to be available in the market. I am young PD patient and atypical one and leading a horrible life, do not know why. So, I would appreciate if you share in great detail, how to make them as I am non technical normal person. I and my wife will be indebted to you for life if you should please guide as to how and where to get the stuff and put it all together... regards Gary

[CBailey11]

I am slowly, but actively working on creating and releasing any and all details needed to make them.

[Jezbo]

Hi CBailey 11, have you come across the work being done by Charco Neurotech. Their device emits a pulsating beta wave frequency ( between 12 and 30Hz) and is mounted, via medical sticky patches, on the sternum. Charconeurotech.com , i am on their waiting list but am not holding my breath as they want to sell to UK, USA, Korea, Canada and Australia first. I'm in South Africa.

[mk2002wi]

Hi, I'm new at this and this is the first time I've heard of PD Gloves. Gloves?

[CBailey11]

It's been a while. I had the PCB almost completed this week when I realized I made a mistake, which caused a LOT of problems to fix. I'm hoping to release the design for the FreedomWavePD controller by next weekend. As soon as I do that, I'll order the PCB and all the parts. When they arrive, I'll make a video of how to assemble it.

[CBailey11]

Also, as for my mother-in-law, she is finally using them regularly. However, we clearly noticed how she slowly declined when she wouldn't use them, and how she got better when she would. She's not dancing around, but clearly the gloves are giving her benefit. I'm hoping a better set of gloves will help more, as well as being able to change and tweak parameters. As soon as the hardware is complete, I'll go back to working on the software and add the ability to change parameters.

[Taranto98]

what a great story. I am trying to pull a few friends together to help ( I need a lot )me build gloves for my use.

[CBailey11]

As an update, I finally released the latest FreedomWave version. This includes the menu functionality, as well as the ability to set ERM or LRA actuators, drive voltage, open or closed loop. I've tried it with the DAEX actuator I had on hand and it works.