I'm interested in anecdotal information from those who are using a DIY version of a vibrotactile glove specifically on how you have adjusted (or not adjusted) your medication over the course of your glove testing.
I'm trying to see if there are any trends that would imply that this is replacing or amplifying dopamine, acting as an agonist or some other outcome.
Myself, the glove has been great during ON times, but my OFF times have been increasing in severity. My hypothesis is that it is acting as an agonist or amplifying my ER agonists to the point where they are out of balance with levodopa. (I'm agonist sensitive, too much hits me with crushing dystonia).
Thanks for sharing your experiences!
Jack's Mom
#glove #vibrotactile
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JacksMomTX
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Not mixed results really. Just the novelty wears off endlessly repeating essentially the same information
I am pretty sure I also exerience dystonia when my total medication (including glove time) is excessive, and I manage it by varying the C/L I take. I am now down to 2 hours a day - I couldn't do 4 hours - I would be "overmedicated". I suspect at some stage I need to get brave and drop the conventional meds further, and rely more on the gloves, but right now - my busiest time at work - is not the time to experiment. And I need to get at least one of the neuro's properly up to speed and onside before I try it
For now - I am happy with using 2 hours a day - probably dropping that to every other day or a couple of times a week, and "fine tuning" with C/L.
On that regime, compared to my current no glove state - I have no crippling dystonia, my arms swing when I walk, I am touch typing this as fast as I have ever typed, I am still skiing black runs, not stooping , not taking ever smaller steps, not stiff in the neck and shoulders, singing when I make the breakfast (horribly out of tune) and giggling at tv programs, bad jokes, and silly events (The latter points being the ones my wife is keen to emphasise).
I can turn over easily in bed, get out of low chairs without using my arms, and play guitar
It's not perfect. Without having regular "on" and "off" time, there are days and parts of days that are better than others. I still get very cold and shivering sometimes (its been minus 8 down here) , still sometimes have a brief, very irritating tremor, and have a disrupted nights sleep (mostly due to bloat, combined with a racing mind - busy at work) and by consequence get tired during the day and take naps
My prescription is 2x 10/100 4times a day (25/100 isn't available in France)Depending on how I feel I take 0, 1, or 2 tablets each time. Currently, on 2 hours a day of gloves, maybe 5 times a week, I probably average 4 or 5 tablets a day
I also take 1.05mg pramipexol extended release once a day
Yes, I'm in test and learn mode with my gloves. I"ve been using versions of system since February 2023 - 4 hours most days/ 7 days most weeks. I was feeling nuanced improvements like improved tremor, improved flexion through previously rigid areas - opening up shoulders etc. My balance has been off since 10/2021, so I have relied on a walker most of the time in order to prevent falls. (I am alone most of the time, so falling is no good).
During this time, my best "off" periods were in the wee hours of morning as if i had some dopamine production overnight that allowed me to get out of bed & move around a bit before taking my first dose of CL.
On 12/21, I started with a new tactor holder design that delivered better displacement and focus of the z-axis stimulation. By 12/28, family noticed much better movement and by 1/3/24, i was walking unassisted around the house. By Jan 15, I was comfortable walking with only a balancing touch for an afternoon at a theme park. (I skipped the rollercoasters). My walking asymmetry has dropped from an average of 75% in March 2023 to an average of 25% in January 2024. This is BEYOND fantastic and worth every buzz.
At the same time, hallucinations kicked in - linked to Gocovri. Separately, when low on dopamine, my dystonia has gone off the charts. This is characterized by not only inability to move for extended periods, but also an involuntary pressure exertion through my upper back & neck that has to be related to medication. This isn't normal physiology.
My Neuro is supportive, but we agree that we need to know more about how the gloves are interacting with the medication. First order of business, adjust Gocovri to get rid of hallucinations. Second, tweak Neupro to see if the gloves are causing over medication in. the agonist category. Third, back off the gloves until things are evened out . I'm sure I'm not the only one trying to figure out dosing.
Thank you WinnieThePoo for continuing to provide insights about your experiences. It's very helpful!
Similar results to Winnie, just not as dramatic – I can't ski black runs (but then, I never could).
I have been regularly using bHaptics TactGloves since early summer 2023, and Tass-like gloves (with 250 Hz LRAs) since early November, averaging 3+ hours a day. The positive effects started with the TactGloves and continue with the TassGloves: overall improved mobility, greater ease of movements, reduced dystonia in the foot and leg. Better concentration and overall frame of mind. For what it's worth, my UPDRS-III was scored 20% lower in late November than at the start of July.
I mostly do the glove sessions in the evening/at night and the positive effects continue into the next morning. I used to take the first C/L at 8.30-10am, now closer to lunchtime, which also means that I can stretch out the medication and better cover the afternoon, which tends to be the low period for me. The overall reduction in C/L is moderate, but noticeable, from 6-7 25/100 C/L to 5 C/L a day.
I have the feeling that the improvements are still ongoing, so I'llcontinue with the current regime of 3- 4 hrs of glove time /day for the time being. What I find a bit frustrating though, is how bad I feel when I miss proper glove sessions for a day or two. I was hoping that a bit more consolidation would have kicked in by now, but maybe that's still coming. Apart from that, I can't say that the results have been 'mixed', raher they have been very positive overall.
Ohhhhh, Winnie, that’s WONDERFUL news, I am SO very happily for you and your wife!!! And Tilly, what a BEAUTIFUL Name!!! I can tell you are SO very thrilled and proud!!! Your wife is too, I am certain. Congratulations WTP!!! 👏 What a GREAT BLESSING!!!🥰 Melodi
I find it interesting that, if I have correctly understood, both Ethin and JacksMomTX found that, like my experience, they got proper glove benefits when they switched to a design using a proper focussed z axis stimulation - whereas using a tactglove / buzzboard arrangement, they got some nice feelings but not the real deal. (I paraphrase)
That's interesting in the context of the debates we were having last year on this subject. I had started on my own "esoteric" path before the tactglove came along, and have not tried them. But my own "proper" finger-pod designs have evolved to be better focused and more stable and more precise - and they got better in use every time. I am quite excited about the prospect of Mk5. The last 2024 tax return is just 5 days away...!
Hi Winnie, in my experience it's more a gradual difference between the TactGloves and the TassGloves -- I don't think that the TactGloves only have an acute effect and no longer lasting impact, but it may be weaker than for the proper TassGloves gloves. I haven't made an effort to quantify the difference.
In any case, I am completely with you on the point that one should try to get hold of proper TassGloves or DIY versions thereof, as their positive effects are much better documented. Only if that is not possible, I would recommend going with the TactGloves, which I think are still better than nothing.
There are some aspects of the TactGloves, though, that I would love to see in next-generation TassGloves: mobility and ease of use (you simply put them on and take them off just like normal gloves), 5-finger-stimulation-option, easy control through a mobile phone app -- perhaps in Mk5? 😀
It's silly things I want to tidy up on mine. Like starting them. I have a very small touch screen monitor on the Pi3. I need to move the pointer over the audio file and double click to launch. To do that I have a spare wireless mouse and a dongle in one of the USB ports. It's fairly easy stood vertically over the screen with no gloves on. It's bloody-near impossible to do with the gloves on - even with the index finger loose. So I have to start the program and then put the gloves on. It doesn't really matter, but I'm sure it must be possible to come up with something simpler. Maybe in February
Meantime, miniaturise, tidy cabling, stop velcro-snagging, no poppers on finger-straps and revised "step-down" box. The new exciters are only rated at 1W, so I am putting the left hand in series with the right, and adding 2 5W resistors in series for each finger, to keep the power dissipation within component tolerances.
As your Pi3 only has a single function, you may want to consider scripting the startup so that the audio file begins to play at boot up. Once in place, you could put on the gloves and hit the power switch to initiate. You will still be able to stop the process or make changes via the UI should it be required.
Brilliant thanks. I am brand spanking new to Linux as of last year, so need a nice clear head after 31 January to take a look at script files. On that basis I guess it doesn't really need the small touchscreen. In theory it would be handy for debugging, but in practice its so small I always plug into a bigger monitor to do anything.
I have a series of videos on a fairly crude website, and I am just testing the stl files which I will add together with a diskimage for the Pi3. I need to make the video(s) for the resistor box - and I'll try to do that today, or at least this week. I have a couple of urgent day-job tasks I must focus on
I'll add another vote for the gloves. I made the buzz board ones last year, had just started using them when I was diagnosed with leukemia and air ambulanced to a cancer center in the next state. That was last May and we just came home (in remission!) at the end of December. I stopped using the gloves during that time. At one point I was so stupid from the chemo on top of the PD that I literally couldn't figure out how to put on the gloves. In an actual answer, definite improvements, probably the most noticeable was my RSB, my wife said I was much calmer sleeping. Now I'm trying to decide on the next ones to build between Winnie the Pooh's and the Freedom Waves. The minimal soldering on the WTPs is a definite appeal, as soldering with PD is "entertaining". Any inputs?
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