Question for those using Stanford/Tass-like gloves - including DIYers, Stanford or Synergic trial participants. What do you typically do while wearing the gloves? The Tass and Synergic protocols call for 2 x 2 hour sessions. What are you able to do while wearing the gloves? I assume watch TV, read, etc. What else?
I ask because I've built a pair for my wife, but she is typically only able to find about an hour of free time each day to sit with them on. The rest of the time she is either exercising at RSB, or at home, eating, on the computer, or in the bathroom. Her main PD symptom is Bradykinesia which slows down her eating to about 2 hours per meal. Anybody able to wear them while eating? Any hacks to make that work for you?
I know I need to ruggedize the actual glove to let her be able to do more with them while wearing them - they're pretty delicate at the moment. Seems like eating would be the perfect time allotment for her to wear them but would need to make them so she could use utensils and not slow down her eating any more than it already is.
Thanks for any tips or suggestions.
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Neurosmith
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I watch tv in the evening with my wife. I can just about handle a stemmed wine glass. In the morning I can use a computer typing with my thumbs or using voice control. I generally try to watch recorded webinars or read technical pdf documents. So minimise mouse and keyboard usage
Yup. It's a bit of a balance between meds and gloves. I tolerate my meds well, and it's a lot easier to take a tablet than spend 4 hours on the gloves, so I am maintaining my meds level, and reducing glove time. When I get down to 2-3 2 hour sessions a week, I will, if necessary, cut back on the meds
It's more a case of "what goes wrong if you stop / miss sessions". With the gloves and my medication, I am pretty normal - as I was before early 2023. No tremor (very brief, irritating tremor sessions - maybe 2 minutes a day), greatly reduced rigidity, lightening touch typing and better guitar playing, and critically no dystonia - not just the excrutiating pain I was getting in my neck arm and shoulder, but no wrist numbness, no stooping when walking, no lower back pain, no feeling of exhaustion. I can do the full long dog-walk and march up the drive. When I have lapsed the gloves, by the time I get home, it takes me several minutes of very slow steps to get up the drive. One of the most obvious effects is turning over in bed - if I struggle, I know I need to get a glove session in - and I'm always astonished at the improvement.
1) yes. it's mostly like building a model with lego. Get the bits online and then connect them together. It would help to have a friend who can solder, a friend who can use a sewing machine, and a friend with a 3d printer. You dont need to understand electronics or anything else. The hardest part is probably the sewing machine work. You can learn to solder as badly as i do from Youtube videos - and that's good enough for making gloves. I may try to add a video about how to fault test. any teenager with a multimeter has all the electronics skills you need
2) I have information about the build here. curepd2.com/. It's very scruffy and unprofessional (rambling) but I am happy to assist builders who ask questions. It is incomplete. i still need to do a video of the resistor box assembly - and test it. I will try to do it today. Meantime i'll include a description
ok - i see i have already posted instructions for building the resistor box. If you know how to use veroboard they are adequate. The video will show how to cut the board to size and how to cut tracks to build a circuit. its very straightforward.
3d printing is not a problem. You may have a friend with one, but there are commercial printers - you just send them the stl file and they will print from that. In Europe I used Xometry xometry.eu/en/sla-3d-printing/
Watching way too much television. Also trying to fit in some webinars. Turning pages is ok while wearing the gloves, but much of my reading material is in electronic format and I have not yet found a really good solution for using an iPad with the gloves.
Being able to type would be great -- perhaps that will come with using vCR socks rather than gloves. (But so far my socks experiences are too limited to report anything useful.)
Speech recognition is a big help with the typing - although it takes a while to get the hang of it. I was going to say "master it" but I am some way off that
Agreed -- actually I have more of a problem with opening the right apps, positioning a cursor, etc. (when I am not using a mouse, and speech control apart from dictating is not yet working very well)
Ditto. I slide a stylus into the elastic around the tactor housing and wife says it helps with using the laptop trackpad as well as typing. I'm going to make some new housings that can incorporate a stylus nib right on the housing itself.
my wife watches tv or reads. She has mastered the right thumb tap on the iPad screen (kindle app). She can eat with normal utensils (longer handle so no salad fork).
You may want to try a vertical mouse. Movements are more wrist/forearm than a standard mouse. The adaptive keyboards facilitate typing.
I mainly watch TV or read. I can easily flip out my fingers to pick up a glass for drinking or to go to the bathroom. we made the wires long enough and I can thread them through my shirt and they’re not noticeable. My plan is to with the gloves, but I have not started doing that yet.
yes four hours is a long time and I watch mostly documentaries. But the benefits are worth it.
1. smell. The first thing I noticed that was clearly different was that I could smell. I'm pretty Sure that I lost partial smell over 10 years ago. We have a new kitten and I am responsible for cleaning out the litter box. Up until now I never smelt anything when I cleaned out the box. Now it's now it stinks to high heaven. Our garbage can also stinks and I never knew it. As I go through them many of the other improvements are more subtle but the sensor smell is brand new and Clearly tied to the use of these gloves
2. I have more energy and I'm stronger. I lift weights at the local ymca On these cool Electronic machines called ENG. After using gloves for two weeks I increased the weights on all the machines despite the fact that I had not been using them for a while
3. When I walk from the car to a store or other establishment I often stumble or drag my foot. I also avoided stepping over curbs or in the dividing area. Now it's much easier to walk a straight line to the store entrance without stumbling or walking around to find it an Easier path.
4. While I can't see it my wife says my face has more expression and she has seen me smile which hasn't happened in a long time.
5. I cut the lawn today and cut the entire lawn in one day like I used to. For the last year or so I would cut half of it one day and half the next. Now I have the energy to do it all in one day
6. It got to the point where I could hardly move around in bed. It was as if I was stuck to the sheets. Now it's back to normal.
7. Used to be that I could clearly tell when I was heading into an off. With my medicines. Now I go an hour or two before I even notice that they're wearing off.
Simply put there are actually times when I feel normal!
Those are fantastic improvements Ken! Thanks for sharing. I hope the improvements continue. And, for the benefit of others, you're using the Buzzah! ( github.com/kriswilk/buzzah ) DIY glove design with LRAs.
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