16 comments

  • wavesplash 15 hours ago
    Having built a pulsed vibration wristband for someone with Parkinson's, just a few notes. For Parkinson's patients:

      - there's a small-ish window in the disease progression where pulsed vibration is able to help a person regain some intentional motor control
      - the device doesn't stop the tremors
      - the pulsed vibration does let the brain's control signal come through stronger, so drawing/typing/moving the mouse is more intentional.  
      - this is no more effective than the results of levidopa/carbidopa treatment, and the levidopa/carbidopa typically calms the overall tremors
      - as Parkinson's progresses, these devices become useless, and if the patient qualifies for deep brain stimulation, it's worth looking into (regain years of useful life if you're lucky).
    
    I haven't tested the device on people with essential tremor, so I don't have anything smart to say there.

    You can make a very unsophisticated version of this without a lot of hardware:

      - small microcontroller with 3v outputs (XIAO's are perfect)
      - 3v sealed eccentric mass motors (aliexpress $1/ea)
      - elastic wristband
      - usb battery
      - software to pulse the motors for about 200 miliseconds for an on off sequence of about 8 times, then rest for about a second and repeat.
    
    Hopefully these folks will price it affordably.

    Side note: the idea was published in 2016-2017 in a few promotional videos from Microsoft research: https://www.windowscentral.com/microsofts-emma-watch-and-pro...

    • giantg2 2 hours ago
      Odd, I saw a video of a pianist where the device did stop the tremors in their hands so they could play.

      Any experience in applying the device to tremors caused by other issues?

      • happyPersonR 1 hour ago
        this person above i think is saying over time as the disease progresses(gets worse) , it stops working as well ... which is sad... but at least maybe for folks in this stage of the disease there's a way to restore some amount of normal.
  • hobo123 1 hour ago
    I've had very slight hand tremors for as long as I can remember. I used to think it's impossible to stretch out your hand and hold it completely steady.

    A few months ago maybe I've started using more and more MSG (glutamate) on my food (maybe two teaspoons a day now), and it's pretty much gone, plus fine motor control in general (say guitar playing) is noticeably improved.

    I'm also taking care to limit my vitamin A and nickel intake, but this one seems to be mostly related to the glutamate.

  • lasky 26 minutes ago
    9 years!? What a tragic joke of a government agency responsible for making therapeutic treatments available.

    why not just sell the damn thing but don’t market it for parkinson’s.

    • rozap 9 minutes ago
      Then you can't bill insurers for it. That's where the real money is.
  • spike021 21 hours ago
    I have essential tremor. Hearing about new treatment options is exciting. At one time my pediatric neurologist basically said the only kind of treatment had real nasty side effects, and most recently the prescription pill I tried also presented side effects that weren't worth it.

    I'm going to look into this when I can. would love to try it if it's financially feasible.

    ETA: Looking at their website and all the models in the photos are older people...

    As someone diagnosed with ET since high school that's kind of funny.

    • Brybry 6 hours ago
      My elderly mom has (had?) familial essential tremor and did two ultrasound brain lesion treatments: one for each hand.

      The treatment was very effective. She went from not being able to eat soup without making a mess and barely being able to use touch screens (let alone write) to no visibly noticeable tremor. They had her draw a before and after spiral and it was an amazing improvement.

      But the side effects were rough. She had trouble walking for weeks after the first treatment, though it eventually resolved with time and physical therapy. She had speech (cadence, slurring, word-finding) issues after the second treatment that she's currently doing therapy for.

      It was a really big quality of life improvement for her but I don't know if she would have done it if she were not retired or didn't have a strong family support network.

    • jacquesm 20 hours ago
      The guy they describe as their pilot patient was much younger.
      • ghaff 19 hours ago
        Apparently (per neurologist) onset is basically bimodal—teens or so and around 60.
    • cluckindan 19 hours ago
      Has anyone told you to avoid beta-carbolines in your diet?
      • dmd 19 hours ago
        Please don't do this kind of thing. It is incredibly rude. For me it's migraines - anytime I mention them I am absolutely flooded by people saying "oh, have you tried X? have you tried Y? All you need is celery juice!" I've been having migraines for 30 years. Believe me, I know more about them than you do.
        • dingring4 18 hours ago
          Not everyone does research like you. And it is definitely not rude to ask have you heard about x and your thoughts about it, especially if you tried something and it didn't work it could spark a good discussion.
          • xdavidliu 15 hours ago
            i think what's going on here is similar to why celebrities are often curt with people that come up to them. Some celebrities are actual douchebags, but others are not necessarily so but just get so many people coming up to them and saying the same thing to them.

            It comes down to two mismatches: first being the famous person's own patience, which is just a normal amount, but instead of usual number of others going up to them now it's 100 or 1000x the number of others.

            The second mismatch is the information asymmetry: the famous person him/herself knows that they have gotten 100x people going up to them and saying / asking the same thing, and they know that they will continue getting this for the rest of their life, so they respond with annoyance, which is completely understandable. However, the average person going up to them isn't gonna think that many logical steps and realize this; they're just saying "oh cool, it's a celeb, I never see celebs. Let me try to talk to them!"

        • lsofzz 6 hours ago
          Sorry bud, feel bad for you. Ignore the f*ckin morons.
          • cluckindan 5 hours ago
            If you often feel that way, the problem may not be the ”f*ckin morons”.
        • moate 16 hours ago
          Seconding this (also migraines, also someone who works in the healthcare advertising space).

          No, I did not try "this one weird trick that doctors hate" and I'm not going to. I'm going to do my own research, I'm going to speak with medical professionals and specialists who understand the MOA of the treatments they're discussing (and what "MOA" even means) because I'm an adult, thanks.

          To anyone saying it's not rude: It is when it's just "have you tried X?" because, who the fuck are you? Are you a doctor specializing in my disease? Are you also a sufferer of my disease? Are you a caregiver for someone with my disease? No? Then go away "dude who read something one time".

          You want to wander in with unsolicited medical advice, you need to show me that you're not just the same losers I've dealt with my whole life saying "oh man, I have a migraine" when they mean an extremely bad stress headache. I assume everyone with chronic illness has had the same well-meaning gibberish.

          It's great that you want to connect with me, but weird that you want to do it about my disease. It might even be a good discussion. But it never is if the lead is "have you thought of this?"

          • cluckindan 16 hours ago
            > because, who the fuck are you? Are you a doctor specializing in my disease? Are you also a sufferer of my disease? Are you a caregiver for someone with my disease? No? Then go away "dude who read something one time".

            That’s a bit hostile. I happen to have been following research around beta-carbolines for almost two decades and am curious whether clinical practice follows that research. My replies may be curt simply because I am writing on a mobile device.

            It is interesting that you should decide to die on that hill, when the parent poster clearly did not have an issue with my question. It was neither directed at you, nor did it concern your disease.

            Are you certain of your own motivations?

            • Retric 8 hours ago
              > I happen to have been following research around beta-carbolines for almost two decades and am curious whether clinical practice follows that research.

              So you’re just clueless here, wow what a rude question.

              • cluckindan 8 hours ago
                Are you a bot?
                • Retric 6 hours ago
                  That’s a weak follow-up, the first question was a solid 9 on the asshole scale. I’d have trouble justifying a pity 3 on your second attempt.
          • guelo 15 hours ago
            As someone with a different chronic ailment I've come around more toward fuck the doctors than the forum posters. The only relief I've ever gotten after seeing literally dozens of doctors over the last 10 years has come from tips from forum posts and more recently LLM chats. Doctors tend to stick with whatever standards their insurance or the FDA has come up with and then just throw up their hands if that doesn't work. You do have to be careful of all the quack influencers and hucksters out there. But in my experience you have to become your own expert, read all the science papers, follow every lead, and force your will around the healthcare bureaucracy. I'm currently importing quality of life altering meds from Indian pharmacies that my doctor refuses to prescribe because it's off label. YMMV.
      • spike021 17 hours ago
        I've tried multiple things over the years with no improvement.

        Are there any studies with results showing this as a suitable way to reduce tremors?

        • cluckindan 16 hours ago
          There are some indications that specific beta-carbolines (harman/norharman) could be a causative factor in genetically predisposed people. Coffee, tobacco smoke and fried/grilled food are the most significant sources.

          See e.g. https://link.springer.com/article/10.1007/s12311-015-0751-z

          • spike021 14 hours ago
            OK but as a high school student I never drank coffee or smoked and I wasn't the type who eats out/unhealthy foods often.

            My grandfather on the other end of the spectrum and who also had it didn't do those things either.

            • saxonww 14 hours ago
              Well, one adjustment is that it looks like any high temperature process resulting in a maillard-type reaction can elevate these. So I suppose roasted vegetables are going to have elevated levels as well. Darker crusty breads more than lighter breads, etc. Smoking and coffee are higher risk factors than food, although idk if that's accounting for rate/volume of consumption.

              A (very) quick look at this says that the compounds are doing the damage, but the real problem is that some people don't metabolize them as quickly as others, and they build up. These are neurotoxic at higher concentrations and cross the blood-brain barrier, so if you aren't clearing them out then I guess you're exposing your cerebellum to more of them for a longer duration.

              Studies suggest that people with ET have higher levels of these beta-carbolines in their blood than control patients, in some cases (like familial tremor) even if their diet and lifestyle doesn't look it should be risk.

            • traviswingo 13 hours ago
              Do you see any meaningful change in symptoms while in a fasted state?

              As in, 36 hours+ without food (just water, electrolytes if you want), do the symptoms improve or worsen?

              • spike021 11 hours ago
                I've never tried a fasted state like that unfortunately so I couldn't say.

                My pediatric neurologist at the time actually suggested trying some wine (with adult supervision of course) because some people seemingly respond well to that. But I've of course tried all kinds of alcohol by now years later and none seem to do the trick.

                Another doctor more recently also suggested trying CBD (non THC) but no obvious improvement from that either, although I really only ever tried one type of CBD supplement and maybe it wasn't the right dosage.

                • cluckindan 5 hours ago
                  >My pediatric neurologist at the time actually suggested trying some wine

                  And people still believe anything doctors say.

                  Alcohol is not a good treatment for anything except acute methanol poisoning, and maybe as a topical disinfectant/antiseptic.

                  Long-term alcohol use will cause tremors, and many alcoholic beverages contain comparatively large amounts of beta-carbolines.

                  • spike021 1 hour ago
                    It's crazy how after this whole thread I think you are missing the point but that's the internet for you.
  • jacquesm 20 hours ago
    This is the kind of technology application that I can get behind. What a wonderful project and great to see the original person with the idea so skeptical that it could work, be outvoted and then see their idea come to life.
  • fridder 22 hours ago
    Really glad they mentioned essential tremors. It can be quite limiting and frustrating
  • trebligdivad 21 hours ago
    The original demo was with a parkinsons sufferer but this clearance is for essential tremors - why the change?
    • yieldcrv 21 hours ago
      Because that’s the only thing the syndicate ran trials on

      Demo wasn’t a trial

  • Palomides 22 hours ago
    why did it take 9 years to not even come to market?

    ah, "Today, Encora is focused on building a national sales force and working to secure coverage from insurers."

  • iqbal1980 2 hours ago
    This is why I'm very optimistic about the future!
  • yalogin 18 hours ago
    Very interesting, I worked on something very similar for tremors, just didn’t take it to a product or a startup for reasons. Glad to see someone did it
  • tagawa 16 hours ago
    There’s an open source project for a glove which seem to aim for similar relief. I wonder how they compare in effectiveness.

    https://github.com/edison-vs-tesla/Parkinsons_Therapy_Glove

    • wavesplash 8 hours ago
      Right concept (vibrating stimulation) wild design choices. You don't need to stimulate the fingers for this type of treatment to be effective (wrist is enough).
  • timlimfimbim 20 hours ago
    See also from the UK https://www.beechband.com/ I've tried out both that and this https://www.amazon.com/Rockhouse-Metronome-Wearable-Vibratin... and both feel similar (NB. I don't have tremor but have a family member with Parkinsons)
    • proee 11 hours ago
      did they help?
      • timlimfimbim 35 minutes ago
        My mother has Parkinson's nd won't leave the house without the Beechband, but obviously that's not exactly a controlled study...
  • ck2 22 hours ago
    note that "FDA Cleared" only means it's (extremely) similar to another approved device

    not that they tested or approved it

    it's an often marketed phrase that's meaningless

    • jdgiese 8 hours ago
      CK2, what makes you think that FDA cleared only means it’s “extremely similar to other approved devices”?

      I think you may be confused, or are repeating something you heard in a Netflix documentary.

      First, “fda cleared” means your device is “substantially equivalent” to another cleared or granted device. You can’t be cleared based on another approved device, since approval means the other device received a PMA. Second, substantial equivalence is actually quite lenient. I know, because I’ve helped clear over 50 devices.

      Finally, a cleared device still can require a lot of testing. Frequently FDA requires our clients to run multimillion dollar studies to validate their devices.

    • treis 16 hours ago
      Maybe I'm just cynical but this seems suspiciously like snake oil. Seems impossible to exclude the placebo effect and the improvements are self reported (more or less).
    • Hnrobert42 21 hours ago
      Is that true with the 501(k) approval?
  • reinsbr 11 hours ago
    as a fellow MIT alum and parkinson's in the family, i applaud this effort!
  • gazpachotron 17 hours ago
    [dead]
  • Lucasoato 21 hours ago
    > Wristband device from Encora Therapeutics started as a project in 2.009, MIT’s iconic product-design class.

    Ok, maybe you're not reviewing the entire article, but at least the subtitle.

    • mandevil 16 hours ago
      MIT uses a weird class numbering system. Instead of CS101, they call it 6.0002.

      The first digit is the school that offers it, then after the decimal point they have their number of classes. (EECS is unusual in that it has four digits after the decimal point, most every other course has just three.) In general, classes that are required start with 001 and increment up, such that 001 is the intro course, 002 follows from that, etc. Then electives start around 015 or so.

      Course 1 is Civil Engineering, Course 2 is Mechanical engineering, Course 3 is materials science, etc. 6 is Electrical and Computer engineering.

      So 2.009 is a mechanical engineering course, in this case one for students towards the end of their time. It's called Product Engineering Processes, where you create a new product from beginning to production.

      • jcheng 16 hours ago
        Whoa, I thought that was a typo... when did EECS go to four digits?

        So 6.0002 is pronounced "six triple oh two"?

        • mandevil 12 hours ago
          https://www.eecs.mit.edu/academics/subject-numbering/ says that they changed things from when I understood it, again. Looks like they completely renumbered every single class so they could create a simple validator because no number was reused between old and new.

          6.0002 is now 6.100B (the B is deconflict) but most everything else went to four digits, with the last digit a 0 for undergrad and a 2 for graduate school taking the same class. e.g. 6.6830 is the undergraduate Computer Vision class and 6.6832 is the graduate Computer Vision class.

    • diggernet 19 hours ago
      2.009 appears to be some kind of class id. The actual class discussed was in 2017.