Encouraging news: My friend as had PD for eight years. He recently bought a THERACYCLE (theracycle.com/). He reports that after a few sessions he was able to RUN. The beneficial effects wore off after a few hours. He is hoping that eventually the duration of the beneficial effects will greatly increase, as has been reported to be the case with the Parkinson's gloves. I will follow his progress and report anything significant here.
THERACYCLE: Encouraging news: My friend as... - Cure Parkinson's
THERACYCLE
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Glovemaker
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Hi there! Just curious to know if your friend has noticed that the duration of the beneficial effects of the Theracycle has increased over the last six months? Also, are there any positive effects in addition to the running that he has noticed? Thanks in advance!
Sadly, the results don't seem to have been have been significant over the long run.
I’m very sorry to hear that it hasn’t continued to help him. I hope he can find something that will. I’m considering getting a TheraCycle for my father who has Parkinson’s, but I’m still researching it and looking for real-life experiences with it. Thank you for your response.
Do you think he’ll use the Theracycle 4 - 6 times a week? A lot of times people buy exercise equipment and after a few weeks they don’t use it as much or at all. Something you might talk to him about before you buy one. 🥊
Good point! He seems excited about it and is pretty good about creating healthy habits, so I hope he will do so with this type of exercise. I did, however, go ahead and purchase a new Prevention brand arm and leg cycler (that was much more affordable but still goes up to 80 rpm) off of Facebook Marketplace, just to see if he will like it and stick with it.😊
mellebrewer did u ever purchase the Theracycle for ur dad? If so, did he see any improvements in his condition?
It seems an obvious question given your forum name. Has he not been tempted to try some vCR gloves?
I took 4 1/2 months to build the gloves with the help of family members. I started using them in mid-April. They work well. The biggest benefit was in serious mental health issues (anxiety, depression, paranoia, memory loss, lack of motivation, nightmares, sleep disturbance).
Mine also took about that time to build in their current form. And I am also getting good results, including motor symptoms. But I was referring to your friend for whom the theracycle failed to deliver lasting benefit. Has he not been tempted to try some gloves?
What software are you using? ie. 167 on 100 off? What improvements have you seen?
Why 167 on 100 off? I'm using the RVS pattern with jitter used by Peter Tass in his tiny clinical trial. So 100ms burst at 250Hz sine wave. 23% jitter, so the "quiet" intervals will vary and not be a constant 67ms. However the TCR remains 667 ms. 3 on 2 off. Aiming at a guestimated -30db ref 1mm deflection (peak to peak) at an initial 0.5mm skin deflection. Guestimated, but I reckon I'm real close.
Improvements have been complicated by disease progression & variation. My wife and I have just finished a thorough review of the last 6 months, to fix as best we can dates of glove use and symptom changes. I have been using my new mk4 glove pretty regularly for a month now, 2x2hours a day. Prior to that, with Mk1,2, and 3 it was much more erratic and probably less. We want to be objective when a doctor asks "are you sure the gloves didnt cause that". I'll put my initial observations (cut and pasted from a private chat) in a separate post
cut & pasted from a private chat
It's obviously hard (impossible) to tell whether anything is a placebo effect or not, short term in a population of 1. I'm also traditionally wary of anything that it supposed to build over time. But I can only go with what I experience. I was chatting with my wife about this - because she had noticed some dyskenesia creeping in - so I've cut back my sinemet.
I think all of the gloves I tried provided a bit of symptomatic relief. Even the original pair with holes cut in rigger gloves and the exciters fixed in place with insulating tape, provided a bit of relief in use.
But the latest pair, in final trim, are spectacular. Mostly we were discussing my right arm shoulder, neck bicep, forearm , thumb problem. I am waiting for an MRI scan on this (in 2 weeks time). I think there probably is something (torn rotator cuff?) which makes that "system" tense up and be painful and numb. But I now realise it is aggravated by an off- period. For the last month or two (maybe more) when I am "off" I get a tight band round the biceps and chest. On my left side, this is uncomfortable. On my right side, if I have also "strained the system" - by using a computer mouse all day, its bloody agony, and I can't work, and have to get up and walk around.
It got worse and worse during the 3 weeks I wasn't using the gloves, but I still didn't make the connection, and blamed a lousy golf practice session. As soon as I restarted the gloves, about 10 days ago now, it rapidly reduced, and has effectively vanished. I am also taking anti-inflammatories, but that misses the point. This morning, I got up in some discomfort (not really pain) with tight arms both sides. After about 20 minutes with the gloves, it was gone. And that relief lasts longer and longer. It's like the gloves move up the threshold for need for drug relief. So, I have gone from very painful, to no pain, no problems, no "overdose side effect", to no pain, and dyskenesia (mild) and a need to cut back the sinemet.
Also, the weather has finally improved, and we were playing in the pool last night. I might as well not have PD. I could throw and catch our little rugby ball with my left hand, as easily as my right. And the thing I noticed afterwards, was that I was getting on and off the low sunbeds, and turning over whilst on them like an 18 year old. Just a couple of months ago on our holiday in Soustons, I really struggled, and was acutely aware of the PD .
I walk with 2 free swinging arms, no foot drag etc. Mostly I don't feel like I have PD - except ironically the drug overdose elements, when I was conscious of my foot "gyrating" a bit on the sunbed due to very mild dyskenesia
It will be interesting to see whether dyskenesia is a side effect which has to be tolerated in the benefit / side effect mix, or whether adjusting down my medication will allow me the benefits of no PD symptoms, without the bother of side effects.
No - right now, I am looking at these as "the fix" for me. I just hope it sustains
PS - it's changed a bit. I've now had the MRI - GP appointment tuesday. Fiddling with meds, although dyskenesias not currently a problem. The dystonia is the problem. Sinemet relieves sometimes, but sometimes I think aggravates. Not sure how much that is to do with combining with gloves. Short term, acute, I can sit down with tight dystonia (never as bad as during the 3 weeks which scored a 10/10 on the pain scale - worst is about 5 or 6 now, but rarely more than 3). I can sit down in pain, and within 20 minutes its cleared , and stays clear for 2-3 hours afterwards. I am hoping that effect will extend to give me 24/7 after a few months use. I still don't rule out either an old karate injury or a newer injury being part of the mix. May know more on Tuesday.
Also, whilst I didnt really have any of the depression / anxiety sort of issues, I sleep better at night, have more energy during the day, giggle watching tv comedy repeats (Mrs WTP observation) and sing whilst making breakfast
I used the EAI C-2 vibrotactile units. My brother in law programmed the computer so that there are 2 algorithms--regular and noisy. I go back and forth between them. I wrote a description of the algorithms, which you can see here:
drive.google.com/drive/fold...
He wrote the software from that description. The box is connected to the internet, so I can run it from my computer. I can also revise the software.
My neurologist was very surprised when my Parkinson's neurological tests significantly improved, which he said completely ruled out the placebo effect.
Does anyone know of any new algorithms?
You can try SVS, but you need 8 channels for that. At the moment I'm using 4 mirrored for the RVS with jitter
Re 'new algorithms' : I've dabbled with random intensity settings as suggested as beneficial by theoretical work of the Tass lab: frontiersin.org/articles/10...
Very subjectively, the results were mixed. While using this approach, I thought the added randomization gave an extra boost of relaxation. However, after a couple of days of going with this, I actually felt worse (when not wearing the gloves) than using the previous fixed intensity setting (for whatever reason), so I returned to the fixed intesity for the time being. But it should also be say that this was on the bHaptics, so I'll give it another shot when I have the proper C-MFs working, which should not be long now.
So many abbs.
What are the C-MFs? I presume some form of perpendicular action tactor
images.hu-production.be/res...
That ought to do it. I thought they wouldn't supply consumers. Would it be rude to ask what they cost?
The C-2 vibrotactile units cost about $200 each with attached cables and and miniature plugs, but without the controller unit. I wore EAI down, but with elaborate tact and also some humor, until they agreed to sell them to me.
Gosh. That's a lot of bucks, and they are the "stock" item. Ethin's link was to the custom unit (same mechanism, custom shell) that Dr Tass uses. It's caused me to revise my estimate of expected retail price for a glove from Synergic to more like $10,000 than $5,000. Which in turn has pleased Mrs WTP who had been thinking my project quite expensive. However much she approves of the results. I haven't done a costing yet , (remiss for a professional accountant) , but I guess if I were to try to build a pair for a friend today, components are likely to be between $500 and $1000 - probably nearer the upper figure. It's cost me a bit more than that, due to "experience" , "prototyping" "screw ups" - whatever the term is. Still, I got a 3D printer out of it. 😄
There must be a DIY way to make the vibrotactile units. I'm going to bestow some thoughts on that issue.
I am wondering if a website could produce the patterns, thereby eliminating the computer and replacing it with inexpensive amplifiers.
What did you print with the 3D printer?
My attempt to post a reply with a picture has ended up down the bottom. I'm not sure how the website thing would work. But I'm sure if someone were looking to make a few they could produce something more compact than my 3 boxes
.. which brings me back to the bHaptics TactGloves (bhaptics.com/shop/tactglove ) they just need an iphone app for control, plus they are completely mobile and easy to handle, commercially available and quite affordable ($299 + taxes and shipping)
MINUS: they use LRAs operating at a suboptimal frequency (170Hz rather than the 250Hz which optimally excite the PCs, in fact their freq is even lower under loading). Perhaps one could simply swap out the LRAs for some better elements, although that's probably too naive (as such tactors would have to have a natural resonance freq of 250Hz or higher and ideally provide only z axis vibration, not in all directions like LRAs)?
I think those darn abs are getting a bit muddled. LRA is "linear resonant actuator". Your C-MFs are LRAs.It is in the nature of an LRA that it has a very dominant resonant frequency. It's more of a tuning fork, rather than a loudspeaker. Happily your C-MF's are tuned to play 250Hz
The exciters I use are loudspeakers. They can play any tune. As such, they are best suited for this task if the resonant frequency is comfortably north of 250hz. (it is 950hz on the Dayton I use)
The LRA and the exciter are similar devices - variations on a theme. They have a suspension, coil of copper wire, and a magnet, and create a movement perpendicular to their reference plane (the middle bit moves in and out like a piston in a cylinder). The audio exciter (or any loudspeaker) has a fixed magnet and moving coil of wire, whereas the LRA has a fixed coil of wire and a moving magnet.
The haptic devices are "ERM's" which stands for "Eccentric Rotating Mass". These do not move in and out perpendicular to their reference plane, but round and round on that reference plane. It is a conventional electric motor with an eccentric (unbalanced) mass (weight) on the motor shaft. Motors spin round and round, they do not push in and out.
They too have a very dominant resonant frequency. Well, they can play different notes, but the note they play is tied to how loud they play it. LRA's and exciters are driven by an AC current. (but it's easier to think of this in terms of alternating voltage - after all current is Volts / resistance(impedance) and again, its easiest here to treat the impedance as fixed or constant - as a simplification. The voltage swings from minus to plus, and the device pushes in and out in synch with it - and that is what creates the vibration. LRA's prefer that voltage swing to be a smooth regular one (known as a sine wave ∿ see picture). Exciters are less fussed (but I feed mine a sine wave)
ERM's are driven by a DC current. I haven't put up an image but its a straight line parallel to the zero volt line. The higher the voltage, the faster the motor spins, and the higher the frequency AND amplitude of the output. They are therefore much simpler to design control circuits. The problem is their response time. The LRA and the exciter go from 0Hz to 250Hz in a handfull of milliseconds (ms). The Vybronics VW0625AB001G cited by PDBuzzboard as (meet Stanford spec) has a rise time of 70ms and a fall time of 90ms. It is hard to think of anything which misses the spec more!! in his data sheet Dr Tass specifies "and a rise time of less than 2ms". The bloody thing is only supposed to be playing at 250Hz for 100ms (thats 1/10th of a second). The ERM spends the first 70ms whirring up from 0HZ -60db to 250hz 0db, 30ms at 250Hz and then another 90ms (when it is supposed to be silent while the other fingers have a go) whirring down from 250Hz 0db to 0Hz -60db. It is completely missing the point. Not only is it making a noise during the part of the pattern where it is supposed to be silent, it is making a noise at varying frequency and amplitude. i'll look at this, and resonance in a seperate post
a sine wave
OK. Resonance. The exciter an LRA are mechanical systems with a mass (weight) and a compliance (springiness - the inverse of stiffness). They will have a resonant frequency. This is the frequency at which movement can be sustained with the least energy input. Best demonstrated, then explained
Take a flexible plastic ruler, a large pencil eraser (or similar weight object) and a rubber band. Fix the eraser with the rubber band to one end of the ruler. Hold the other end of the ruler and wobble the eraser up and down. it will naturally settle to a frequency of about 2Hz (Hz = hertz = cycles per second). At 2 Hz there will be 2 wobbles per second.
OK - now try for 4Hz. Try to wobble it twice as fast (Parkies with a typical resting tremor have an advantage here 😂) . You CAN wobble it twice as fast but its hard work. It needs much more energy input than at the resonant frequency.
So - now try holding the ruler half way along. It's easy to wobble at 4 Hz and much harder to wobble at 2 Hz.
Try doubling the mass (add a 2nd eraser). Increasing the mass lowers the resonant frequency. Increasing the compliance (decreasing the stiffness) lowers the resonant frequency
Just to complicate matters the glove has 2 interlinked mass-compliance systems. The tactor has a mass and a compliance. And your skin has a mass and a compliance. So, we have a "coupled oscillator". We're not going there!
In this diagram the blue blocks are the vCR pattern with no jitter executed correctly. Orange blocks are an approximation of the VW0625AB001G . The y axis is frequency : max = 250Hz. x axis is time in milliseconds. This is not to scale, and rise and fall slopes are fake logarithmic. But it shows the point. ERM's may create a therapeutic vibration like Jean Charcot's trains, but they are very unlikely to be able to provide vCR because they are at the wrong frequency (s), spread across the wrong zone, and also stimulating other neurons, with different response times. It's all too confusing - too many inputs, vague timings, wrong groups of neurons.
illustration of vibrotactile patterns
Oh wow, thank you for the very detailed explanation! So let's just forget about my naive idea above.. 🥲
Don't worry. You'll love your new gloves once you finish building them
Very interesting! Thank you for writing all that up. Also, congratulations on the improvements that you're seeing. It sounds promising. I hope you find the combination that eliminates the injury (If that's what it is) pain.
Thank you. I forgot to mention sense of smell. I was reminded as I am standing here smelling the toast cooking. Last night I could really smell the limes I was cutting for a gin and tonic. Tbh I hadn't realised limes smelt before that
I offered him the use of my gloves several times, but he has inexplicably declined thus far. I have a second unit, with him in mind, that turns out to have a mysterious glitch.
Odd. My Irish mate Jim, who I am convinced could benefit heaps, is lukewarm, to the point of total disinterest. I was going to lend him the gloves for a few days - because I think the immediate effect is enough to pique his interest. You can lead a horse to water...
I liked the video showing a man on a theracycle with his dog on a treadmill next to the theracycle.
Yes. I made my own vibrotactile drivers using a dayton exciter and my custom design housing. Obviously I now print them myself for the cost of the electricity and PLA, but I had 2 sets printed before that by exometry. For the box, lid, plastic disc and screw it's about 15 euros a set. So about 120 euros total. I also printed a box to house my step down resistors and the cable brackets on the gloves.
Vibrotactile bit from a 3d printer
@glovemaker WinnieThePoo I don’t understand w hat you were talking about in this thread. But, I assume it has something to do with a version of the Peter Tass glove. It sounds as though the glove u have made works well for you. Do u know if there is anything commercially made that I could buy? I live in NY
Yes it was a version of the peter tass glove. I discuss it in more detail on other threads. I am not aware of anywhere that you can buy a glove. It will probably be at least 2 years before the glove is available from tass /Stanford.
That’s unfortunate. chalk up another promising therapy that won’t be available to many of us before pd annihilates our quality of life
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