I built a buzz board using an Arduino controller. I have been using it every day for about three weeks for about 1-2 hours a day. I have noticed some positive effects but don’t know where to start cutting my med (Sinemet). It seems I get more “Time on”, and even mental clarity, but it has been difficult to quantify. Basically, I don’t know where one should end and the other should start. SO, I am caught in the in-between, now suffering my worst dyskenesia and panic attacks, while trying to figure it all out. On top of that food has become impossible to figure out too. I feel hypoglycemic and get all of it’s symptoms, however I am not diagnosed a diabetic. I do take alot of Sinemet (on the order, but less than Mr. Bhutani (the wonderful story & marathon runner).
To me, this might be a good sign that the Dr. Tass vibratory therapy is working, but it’s hard pinning the tail on the donkey do-to-speak. Any thoughts appreciated!
Thanks!
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Tryguy
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An increase in dyskinesia may be a sign that you are improving. In any case it is a reason to try cutting back on your Sinemet dosage. Only make changes In small steps.
We discussed this a bit this evening on Marc Andersons group. There appears to be a couple of alternative approaches.Some,like me are trying to replicate the therapy that Peter Tass is trialling in his clinic as closely as possible, on the basis that it needs more than a ride in a bouncy train carriage to get the sort of benefits seen in the news report on stanfords website.
Others are focused on small, inexpensive and simple as long as there is a pattern of some sort.
I guess it all comes down to the placebo he needs in his clinical trials. The first approach assumes you need to get a lot of things right or it won't work, or even makes things worse.
The second assumes anything with a pattern of buzzes will work, and stanford need to go to elaborate lengths to specially create the only vibration pattern which does nothing.
This is an app which measures the number of times that you can type q followed by p followed by q etc, using first just your left index finger for 30 seconds, and second just the right index finger for 30 seconds. The higher the score the better. Scores between 10 and 30 are typical.
A practical problem is to reduce as far as possible the "noise", particularly any drugs that you have in the system. For me doing the test on getting up in the morning is good, but not perfect.
Having participated in the SPARK trial I can find plenty of tests. My problem is, that unlike when on the trial, when I was unmedicated and could only tap beats with my left foot at about 20 beats per minute,now, on medication, I am completely normal {say 120 bpm). So the measure is likely to be medication reduction.
The other complication is the distinction between acute relief and sustained relief. The initial phase of treatment supplied by Stanford involves 4 hours treatment a day. I doubt I've managed 4 hours yet. My best was probably 3 consecutive days of more than 3 hours without the original gloves moving around too much
I'm hoping to get a couple of weeks of 4 hours a day in with the mk2 gloves now
But the point is, 4 hours a day is huge. The goal has to be to achieve progressive sustainable relief, and move to a maintenance treatment. I think stanford look to 2 hours, 3 times a week. That's much more sustainable
I made my own gloves following the youtube videos, with archery gloves, cell phone buzzers and Arduino nanos. As others have said the benefits can be subtle and subjective. So far I think my wife most appreciates that the gloves seem to be reducing the frequency and force of my RBD. This is huge, because the potential for hurting her is high. One other thing that affected the RBD (negatively) was trying Pramipexole. I was still on partial dose to make sure no side effects and my wife told me I had to stop taking it as I was hitting harder and more often. I believe tremor is improving (It almost seems like more of an essential tremor than PD sometimes now. I do seem more fatigued lately- I wonder if that could be changes in my brain using a lot of energy?
I'm using the 3V 167. trying to decide if I want to try a different one. Been using them for about two weeks now. Some days I get in 4 hours, usually at least two.
Is that the frequency of the cell phone buzzer? I meant the pattern of vibration.3 on, 2 off, 100 ms bursts, 667ms cycle, random selection of each of 24 sequence patterns, with 23% jitter. That sort of pattern
Thank you for your feedback on Jim's honeymoon thread. The placebo is the key to all this. To be valid you need to be unaware of the difference. Or rather unable to tell which of the 2 is genuine. Assuming you've seen a bit of what's going on the pattern can't be a simple 1234, the tone can't vary much from 250hz. Will they issue a new pair of gloves? If not, they can't change tip size or height and they can't change intensity obviouslyThe more I study this the more I think what a good job it is that we only have soldering irons for toys, and not chemistry sets. Imagine knocking up a home brew of ikt-148009 or buntanetap and having mostly the same letters in the chemical formula, but not necessarily in the same order (with apologies to Eric Morecambe)
naturally I’ve observed the pattern and I can follow it to some extent,even predict it a little after just 3 two hour sessions. It makes me wonder if this is the placebo. Doesn’t matter because I’ve been promised 2 months of the real protocol.
Clearly the idea of a placebo is you don't know the difference between it and the real thing. It will be interesting to learn more as the trial progresses. Meantime , I have had 2 major breakthroughs
1) encoding Dolby digital files
2) the Mk2.5 glove, which Mrs WTP very kindly spent last night sewing. The Mk3 will be better but this is usable and much more robust 😀
So, my arduino-based buzzboard needed repair, and it was getting harder to keep hat kind of time when a couple of the motors were shot. So, my partner in all of this used the YouTube video as a guide to create a pair of gloves, each with its independent power supply, nano and uploaded sketch as well. Although the video claims success with it, I found no such relief. In fact, over the course of a week, I went from 3 hours of giddy hope to having my kids remove them from my stiff hands after 20 minutes. Anyone else out there with this experience? To me, it makes sense to use a glove version closest to the one on all the videos - 2 gloves coordinated to one controller/battery. Easy for me to say, but harder for me to be as the PD warrior. Onward and Upward! Any and all comments and questions welcome.
Are you saying that your buzzboard was providing relief but your gloves are not?I would be really surprised if it matters whether the 2 hands are mirrored or independent. What else has changed?
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