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Ken Ware - Neurophysics therapy

Discussion in 'Other treatments' started by unicorn7, Feb 26, 2021.

  1. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    Sorry, I thought you were Dutch :D

    I agree with you, I am totally put of by secretive stuff, I think if you have something that works well, you should give if to the world to use. But maybe that's just my Dutch social healthcare attitude speaking ;)
    It's definitely nothing like the lightning proces, as that is a four day course and they claim your are then suddenly healed :D. This is more of a: "if you make a tiny change every day, maybe somethings has changed in a year from now". I think there is actually still a lot of BPS talk around it (by Ken Ware), but for me the exercises are completely physical, nothing BPS about it.

    The exercises are light and everyone I know (that was mild or moderate) could do them. Your are not supposed to strain yourself, feel pain or have any negative reaction to them.
    I have the feeling especially people with OI respond very well to this, I think those people are the "extreme" cases I talked to.

    What it does for me: I think I train my body now to do everything with the least bit of muscle involvement. Because of this, I got really aware that my body (it's not something I consciously do) uses a lot of muscles tension/muscle involvement in every movement that I make. And that goes on even hours after I made some exertion, when I lay in bed or sit on the couch. I learned to slowly turn those responses off under controlled circumstances. It means I use less energy with things like sitting, standing and walking, so I can do much more.
    So I don't know yet if it goes further than that, but what that means for me is that I can a lot more without getting PEM. The other thing is that my heart rate variability is going up after I have done the exercises, so more parasympathetic activity?
     
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  2. Hawki77

    Hawki77 New Member

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    Hi @unicorn7 thank you for your response. Sorry I've been in a bad patch so haven't got round to checking on here for a while. So would you summarise the Ken Ware stuff as becoming aware of your body more while you are making any movement and trying to relax your body and use the most minimal effort so learning to do things in a less strained and more minimal way? I think it's good if it has helped you have less PEM but it doesn't really sound like it's something that complicated based in a lot of theory? It sounds similar to Alexsnder Technique in respect to how its all about being aware of how you are moving and holding your body For? I just don't understand really how it can help. For example I have mild fatigue and can do small walks most days without always getting PEM but it hasn't helped improve my ME I've had it for 10 years. Anyway thanks for trying to explain it to me and sorry if I sound negative about it. I just wanted to try and understand exactly what it was before throwing more money down the drain!!
     
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  3. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    I am being really cautious with the explanation, because I’m still working on it and have no idea what the long term will be.
    Plus I have had a lot of other treatment with medication, so no idea what’s doing what.

    I have tried a lot of physical therapies, like yoga, feldenkrais, neuromovement, all kinds of therapies, but it never made a difference. So I don’t know if it’s the method, or just the right time and motivation? I do notice that there is a enormous difference when you make small differences in posture and movement.

    Do you notice symptoms being worse with certain movements? I have always felt that upper body movement was harder and arms above my head was killing and anything with my neck as well.
     
  4. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    Just a little update!
    I’m doing amazingly well, I can hardly believe it:nailbiting::nailbiting: I am beginning to think this might be remission. I have the feeling I actually have my life back since 2 months now:angel::angel::angel:

    I think I finally hit the right combination of medication and exercises. I’m going to Australia in September to train for 4 weeks with the wife of Ken Ware. This beginning of a basic training has helped so much, I want to get better as soon as possible now. So I will do a intensive 4 week therapy (and intensive is nothing aerobic or something, it’s getting rid of as much muscle tension as possible in that short time).
     
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  5. Sasha

    Sasha Senior Member (Voting Rights)

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    Glad you were feeling so much better, @unicorn7!

    Has your improvement maintained?
     
  6. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    Yes, it going really well! With all the practice I’m putting in, it’s getting easier and easier to turn of all that excessive muscle activity, that I really don’t need:banghead:

    it’s really insane how my body wants to involuntary use muscles when lying on the couch after exertion for hours and hours! I do spend time practising and when I do a real exertion (I rode my horse yesterday:angel:), I do half an hour of getting all those muscles to release again. But I do find that the payback is so much less, so it’s definitely worth the time I put in:thumbup:
     
  7. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    I had to give some kind of update:)
    I’m in Australia at the moment, this is so cool. They are definitely the real deal, pretty much building my body up from the ground up. It’s super interesting and I’m gaining muscle power very slowly still, but the inprovement is there:thumbup::thumbup:
    Whohoooo!!!
     
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  8. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    Hi guys,

    I don’t know if anyone is interested in a little update, but here it is:)

    I am back from Australia since about a month. I actually had a holiday there, hardly any symptoms and walked 10.000-15.000 steps A DAY:nailbiting::thumbup::thumbup:

    The tremors they teach you are a game changer. Now it doesn’t feel so special anymore, because I do them the whole day long:laugh:
    But the first day I was doing them already.
    I can remember, I sat on a fitness machine, no weight on it, she had to help me lift the weight:laugh:. Could not for the life of me get it up. I do the tremors and for a moment the muscles work again and I push the weight up, no problem:nailbiting: Of course, just once and that’s it.
    But that feeling of sudden strength, and not feeling like a sopping wet tea towel (I don’t know if that is a proper translation into English:laugh:), I will never forget.

    I can really only highly recommend this therapy, especially when you are mild/moderate and you want to be able to build anything up without getting worse.
     
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  9. Trish

    Trish Moderator Staff Member

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    Thanks for reporting back, @unicorn7. I hope this improvement is maintained for you.
    I don't understand what you mean by tremors. It's a while since I read through this thread, so I may have missed your explanation.
     
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  10. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    I don’t know if I talked about that. Because they only use that in the intensive sessions in Australia. It’s some sort of temporary reset to the nervous system. To me, it feels like I can have my own chirorpactor/masseuse with me at all times:laugh: You can just loosen all your muscles up in a minute, it’s really a skill to have, especially if you have a lot of chronic pain:thumbup:
    I am not really comfortable putting my own tremors up, maybe there will be some in a clip, as I did one of those testimonials for them. I will look for a clip from someone else.
     
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  11. unicorn7

    unicorn7 Senior Member (Voting Rights)

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  12. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    @unicorn7 is posting all this in good faith and I hope they carry on updating this thread without feeling mocked. And it’s great that they feel better.

    But those convulsions look very much like those associated with charismatic religious practice, alongside glossolalia and similar “gifts of the holy spirit”. Alongside the pseudobiological explanations, this is all suggestive of faith healing.
     
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  13. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    :):):):)
    Hihi, I haven’t looked at it like that:laugh::laugh:

    It’s more like very good physiotherapy:thumbup::laugh: In practice there was not much mind/body talk at all.

    Do you have shaking muscles with every movement? That’s it:)
     
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  14. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    “Shaky” is a reasonable term for the feeling I get when trying to move after exhausting my energy supplies, but I have only ever moved like the chap in the video when under amphetamine duress at early 90s raves.
     
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  15. Trish

    Trish Moderator Staff Member

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    Thanks, @unicorn7 for the video. I can't tell from it whether it is the person or the machine causing the shaking. Can you clarify whether a machine is needed, or whether you need to be someone who shakes like this spontaneously when you try to move, or is it something people are trained to do as a deliberate exercise?
     
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  16. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    :laugh::laugh: You can pretty easily build it up from there.
    I do it everyday in the gym now, I wanted to make a t-shirt that says: “don’t worry, I don’t have epilepsy” but everyone is so absorbed in their own thing, no-one cares:laugh::laugh:
     
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  17. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    This reminds me of something I got from a private physio (after I saw a private knee surgeon who suggested rehab before doing the suggested surgery) for an injury I have had to my left knee from kickboxing as a teenager. The initial physio was all about switching muscles on and off and having control, I couldn't fire my left glute muscle and a bunch of leg muscles properly and learning to just flex them and then basic strengthening them was a big improvement. The second stage was all based on range of motion, by rolling the joint through its maximum pain free range I could find repetitions and gradually rebuild up control of the muscle structures together for precise movement. Its sort of the polar opposite approach to shaking but I think they try to achieve the same goal, moving the joints and muscles through their range of motion to train the nervous system to control the muscles better. Starting initially almost entirely unloaded and moving up to doing so under some stress and going from really slow too athletic speeds. Anecdotally for me it worked well, considering the NHS in trying to fix this put me in a wheelchair for 5 months I would say it worked a lot better than the nonsense exercises the NHS had me do anyway! Its based on a particular youtuber/trainer who produces a bunch of videos on this but I am drawing an utterly blank right now on the channel name and I can't find it but I'll be back once my brain fogged brain chews it over and spits out an answer.
     
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  18. Florence

    Florence Senior Member (Voting Rights)

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    Are these similar to the exercises outlined in David Berceli's book? He calls them 'Trauma Release Exercises' and there are YouTube instruction videos on how to do them. I did the 'lying down' ones for a while and found them relaxing, if not transformative. The idea is to put the body into a mildly stressful pose which then causes the muscles to shake.
     
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  19. CRG

    CRG Senior Member (Voting Rights)

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    This stuff has been around since at least the mid 70s with various practitioners giving them an 'own brand' gloss. I think the original idea came from the very dubious practices of so called Kundalini Yoga. My pre illness 40+ years memory of adding some of these to a daily routine is that they were quite good for 'body shaping' - working muscles that were otherwise not engaged plus they produce a significant endorphin hit. I can't imagine these being anything but problematic for anyone more than mildly affected by ME/CFS and certainly not in anyway 'curative'.
     
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  20. BrightCandle

    BrightCandle Senior Member (Voting Rights)

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    I found the channel, ZHealthPerformance they finally posted a new video!

    This is what I mean about range of motion (circling the knee) training. Its a really interesting technique, I have no idea if they have any better science underpinning the neurology aspect (doubtful) but the technique of range of motion especially helps me keep my knee functioning.

    https://www.youtube.com/watch?v=ORpLt10Dz44


     

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