Pragmatic and practical insights, tips & tricks and research for people with Parkinson's Disease and caregivers, from the insiders' perspective.
Includes Gary Sharpe's inspirational video diary, demonstrating and discussing how he is progressively reducing his symptoms and improving his quality of life.
I am so excited to come across such a refreshing approach/understanding of Parkinson's sisease. I am a craniosacral and physiotherapist doing a bit of digging for useful info about gut health and P.d. for a client when I came across your website. I don't know if you have had any experience of craniosacral therapy, but big into the effects of whole systems harmony, polyvagal theory and impact on neurophysiology/psychoneuroendocrinoimmunological etc.
I have recently taken a career break from the NHS to follow my passion for cranial work and develop how I integrate the understanding that comes from cranial teachings with movement based practice. Your findings sit so in harmony with my experience. I have to say that I haven't gone out of my way to look further into similar approaches to P.d. - from what I see on you website, you appear to be pioneering a way forward - is this all your own research, or can you point me to other sources too?
I have worked with a number of Parkinson's clients very effectively, but - as is often the case with 'complementary' approach, the challenge is in embracing quite a different way of thinking - and the medication/grip of disease/anxiety and stress are powerful and seductive hooks. The gentlemen I am looking into gut health for has found after a couple of our sessions, but not all the time, he is able to play piano after 9 years of his tremor being too disruptive. Our next work is with me carrying out cranial work while he is playing and exploring the sensory experience/interoceptive experience of doing so - then looking at ways he can find balance and access that 'place' for himself.
We (therapists) do a lot of work with trauma recovery, establishing resources with - building stronger neural pathways to grounded/balanced CNS states etc., as well as the benefits of the hands on work itself. Familiar with Gabor Mate/Lavine/Roschild etc, all sitting comfortably with how trauma affects movement and inhibition of such.
My experience as a physio in the community has involved lots of work with Parkinson's and increasingly I see the effects of stress and the social engagement system being critical to understanding and improving movement, and in the last 3 years have done much more work with body awareness during activity, whether it be gaining flexibility or strength or balance. The toughest part is engagement especially when the general physio community is not promoting the same message. As you're website implies, it requires such a commitment to your well-being. I totally admire your perseverance and have empathy for how challenging it must be for you at times.
Is your approach being embraced by the professionals researching the rehab/recovery work? I would be really interested to hear more. You may be interested in the work of Body Intelligence/biodynamic craniosacral therapy, Pain is Really Strange (FB and blog site) - although name implies about pain, it's that full mix of what you have been exploring yourself (Steve Haines, craniosacral therapist). Would love a reply!
Kind regards, Sue Watson (Scotland)
Gary, I love your approach, and the way you describe and illustrate it so well in this article. Watching the music and dancing video was a true delight. I also read your post about digital music as medicine, and wanted to comment on that because I felt so moved by it. I love this post so much!!! I can relate fully. I've said for a long time that music is medicine for my body. And it's a delight to see the videos of the effects of your music medicine on your body and spirit! :)
Marva Lee Weigelt
What a revolutionary week this has been for me to integrate new understanding, launched by Gary Sharpe’s post about how trauma and chronic dysregulation affects other people’s perceptions of us in social situations. I had a giant aha that helped me understand and have compassion for my own mysterious social isolation as a child and well into adulthood.
Integrating that with my increased awareness after taking a class a year and a half ago and staying in touch through groups like this, I am able to understand that honing my interoception skills allows me to recognize virtually instantly when I am in the presence of a dysregulated person. I’m sure I’ve always done this, but without the comprehension of what’s happening.
I am using this raised awareness to great advantage in my peer support practice, and also observing how I am assisting others with cor-egulation.
Then, last night, in a community ukulele group I lead, I could understand why I was reacting as I was to a young woman who is a beginning player. It is quite clear that the rest of the group is having a similar reaction to her. In fact, one player stayed afterwards to talk to me privately about how the awkward young woman made her feel unaccountably “nervous.” I was so happy to have the language and concepts to help her understand what I thought was happening at the nervous system level. Then she said, “I used to be that way myself,” and I knew I had a new ally in building compassion instead of following the natural, but heartbreaking impulse to avoid and exclude this young person."