I had a remarkable first session with a local craniosacral therapist, trained in the originial structural Upledger approach (as opposed to the Biodynamic approach). He has worked a lot with PD and says that while 'of course there is no cure' his patients' neurologists comment that they're not progressing as expected.
He said my neck was incredibly tight, and that nerve and blood flow to the brain was restricted. Amongst other things, he did something called a 'neck unwind' and I am now able to turn my head to the left and right without great pain (makes parking much easier!). I felt incredibly relaxed afterwards and my early morning tremors are greatly reduced. I am very early PD (undiagnosed) and he thinks many of my symptoms will have been coming from this.
I know many people on this forum feel they've tried everything, but I really would encourage looking into this. He is elderly (sadly retiring soon) and a stickler for the original Upledger training and less enamoured with the Biodynamic version of craniosacral therapy which is popular now (which once helped me with sitting bone pain before a flight home from Bali, in a way that I found near-miraculous at the time). Biodynamic people don't do the same structural work; they work via deep rhythms and energy.
Here is a case report by an Upledger trained craniosacral therapist on a PD patient to give you an idea of the kind of detail in their approach and what they can do.
Personally I would travel to see someone who could work this way (people travel a long way for him, but he rarely takes people on these days - however he has mentored two people in Sussex who he refers to, for any UK people interested).
I'd like to know the cost as well. I have been to a biodynamic therapist very near where I live and she worked wonders with me the first session, but the second was many months later, and not as effective. My tremors do relax after a while on the table. I also saw another biodynamic therapist out in Woodstock NY who was hailed as an amazing one, and it was very early after my diagnosis. I fell asleep. I have a feeling it might be a good idea to find someone who does the original form. They usually charge around 150 per session here in NYC. Thank you for posting this detailed account. Very useful.
Yes I have a feeling the original version is more relevant to PD. Good luck with finding someone. That said I wouldn't see falling asleep as anything other than a positive :). And I think more regular appointments are helpful, if possible, as it's an ongoing process and I think they lose the thread if there are long gaps.
I was lying down, and he was behind me taking the weight of my head in his hands; I relaxed fully and my head then moved around all over the place, very vigorously - he said he wasn't 'doing' anything and all the movement came from my neck tension unwinding.
Thank you for sharing this. I gave cervical dystonia and PD. I was diagnosed in 2020. My neurologist was giving me botox injections which worked great for 2 years but has not worked at all for the last year. I gave a very tight neck and can barely turn to the left. My Sinemet does not seem to be working as well either. I have just started using Neupro which is a daily patch. It seems to help with restless legs but nothing else. Are there therapists in the US that do this treatment?
Yes, it actually came out of the USA. The lastest wave has been Biodynamic but I think if you look you'll find people who still use the original Craniosacral approach (which I'm guessing is called 'structural'.) The woman who wrote the PD case study I shared a link to is in Florida.
There is also Biomechanical Craniosacral therapy which sounds very precise and good, and the Stanley Rosenberg Institute also trained craniosacral therapists in this approach.
"Biomechanical Craniosacral Therapy is specific; it helped me find the exact places in the cranial joints tha tneeded releasing and provide me with more than 150 specific techniques to release these tensions. This powerful approach often effectively restores the function of the cranial nerves in a short period of time." Stanley Rosenberg, 'Accessing the Healing Power of the Vagus Nerve'
Thank you so very much!!! I'll let you know what I find out. I live in Missouri and go to Columbia and St Louis to see neurologists. My neck pain is so bad that I'm constantly using ice or heat and trying to find those pressure points to hit so am excited to get this info. Thank you agai for sharing.
That sounds awful. I can't tell you how much pain relief I've had from (European style) osteopaths over the years - it sounds like Upledger & Biomechanical Craniosacral therapy could be really, really helpful for you.
If you don't find anyone and are stumped, then please look into the Eden Method (formerly known as Eden Energy Medicine); they also have good ways of working with pain, and with the 'freeze' response. The meridian that governs fight/flight/freeze (Triple Warmer) runs down through the neck, and they could both help it relax, and teach you some self-care you could do to support that process.
The advanced practitioners also work remotely (don't ask! It does work - but obviously hands-on is best).
I just had my first session with a massage therapist that lives 30 minutes from me. I was very impressed with her approach and have been able to turn my neck and have no headache . I know it will take more than 1 session and plan to see her weekly to start. She did all manipulation on my head and neck but it affected my hips,ribcage and shoulder alignment. She trained with an Osteopathic Dr and looks at the body from a holistic viewpoint. Thank you again for sharing this info! If it will help me control the dystonia, it will be a huge relief!
A Naturopath recommended this for my husband to help his balance. Any idea if it would help? He's already had some cranial work done by a chiropractor but it has not helped with his balance issues.
Yes, I'm sure it would - the craniosacral practitioner commented that my balance had improved and said he'd worked on it in the first session. I nearly fell but didn't recently - the kind of fall where I would have gone down normally - so I'm sure this is true. I am responding quickly and well and of course every patient is different.
Do seek out an Upledger trained practitioner if possible ; they're the ones who work structurally and are almost like European osteopaths in their skill level.
I also just read that T'ai Chi Juan, a simplified form of Tai Chi, is great for balance (obviously regular tai chi is too!)
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