By Gary Sharpe, Co-Founder of Out-Thinking Parkinson's
The Out-Thinking Parkinson's Project may be based on a personal journey, but in this post I wanted to make the case that this is much more than just a set of anecdotes. We already know from our networks within the wellness communities that what we are discovering here does translate not only to other PwPs, but also to people affected by other conditions too.
I know that many people feel that anecdotal evidence is somehow not "worthwhile": that if information does not come from "experts" armed with clinical trial data, then it is not "useful". Here at Out-Thinking Parkinson's, we like to challenge this view. Deb, our Director of Wellness Research, has a saying: "You are the expert in You" and she's written an article about this:
You Are the Expert in You
Likewise, when it comes to living daily with Parkinson's "We are the experts in Us". Or, said another way, it is those of us who are affected directly by the disease everyday who truly understand it.
PwPs and their primary carers have an enormous collective wisdom about the disease. The sum total of this hard won knowledge is immense. Dismissing anecdotal evidence is fraught with peril, because it can often lead to people then being coy about sharing their own experiences if it is contrary to the dogma. When enough anecdotal stories are combined, they can become a more complete narrative. So we encourage PwP everywhere to share their acquired wisdoms and to understand that, together, we are the Experts in Ourselves.
I would like to close by providing some testimonials which do show that what you will find on our website has already impacted positively on other people's lives and hence why it really is indeed worth sharing.
Jeff Porterfield is a fellow traveller: a person with Parkinson's, yet with a supremely positive outlook on life and love. Jeff recently published a post "Her Face Glowed with Pure Joy" about our work. He has been finding the techniques which we have been developing and sharing here very useful for his own quality of life with PD. But in his post, Jeff describes how he shared onwards our techniques with a lady in a Parkinson's Disease Clinic and how he taught her to focus and exploit these for herself. He describes the pure unadulterated joy we, between us, gave to the lady. Deb and I have said that if what we are doing helps just one other person it would be worth it. It seems, therefore, that we already have won because we have already helped Jeff and his new friend.
But what we were always worried about was that it might not scale, that these results and techniques might be peculiar to myself or a few others only. As we have progressed and gained supporters like Jeff, we now know that these techniques are useful to the Parkinson's Community quite broadly. What Jeff has helped us to show is that they can also be translated - the word can spread - the knowledge can be passed on one to another.
By S.S. via email
I have late onset vascular Parkinsonism-diagnosed age 83, and came across Dr Catherine Hamilton’s blog redlightsonthebrain.blog. The author is a retired general practitioner who is involved in research in Australia. I have been using transcranial and intranasal lights for 5 months and have experienced relief from symptoms that has greatly improved my quality of life and am surprised not to see many (1 only) references to the benefits of this therapy.
By Facebook Group Member
I have been having great success with the Hope Shortcut programme. I have both Lilian Sjøberg and Gary Sharpe courses. The material really resonates with me and this approach together with John Coleman Rethinking Parkinson’s is really helping. The tremor I have been experiencing is much reduced and often gone completely. I notice how it ramps up when I am stressed or self conscious. My mood and energy levels are much improved.
What hasn’t improved is the slowness and stiffness in my right hand and leg. It is probably not noticeable to others but I notice when using static bike and when folding washing etc. any thoughts on root causes of this slowness? Left hand side fine.
Thank you all for your work
By S.A.
Thank you both for all the work you have done. Lilian Sjøberg for your knowledge and Gary for helping to make it accessible. My daughter who suffers from anxiety and panic attacks and myself with PD found it so enlightening. I can also see how when my father 93, who also has PD, gets stressed his cognition deteriorates dramatically
By Brad Maybury
Gary, I mainly want to thank you for this site and for your inspiring example. I was diagnosed with PD two months ago. On top of that, I'm in my sixth week of radiation therapy for Prostate Cancer with the accompanying hormone meds (fatigue). Your attitude and example are helping me to stay positive and feel that I can beat both of these! I've been doing the fast-walking per John Pepper, plus a bunch of other things. I'll get a mini-tramp soon. I already understood the trauma link, having discovered my own about six years ago, as well as being a fan of Gabor Mate (I see his book on your site). I had not made such a precise connection with PD until reading your story (thanks!). You are a huge inspiration and have already helped to improve my life!
By Frederick Lowe
Your understanding of the many important factors that contribute to Parkinson's and the many practical suggestions on how to address them runs parallel to my learning over the last 5+ years. You are a man after my own heart. Love the Polyvagal theory knowledge. I knew somewhat of the importance of improving vagal activity, but not to the depth you have shown. Thanks. Totally agree with knowing how the Cell Danger Response is involved with being stuck in the inflammatory and alarm state. And few others besides ourselves appreciate the amazing role the fascial system plays in this, from head to toe. This is besides nutrition, movement, social interaction, meditation, breathing, eye exercises, inflammation, etc, etc. Big thanks for mentioning the Eye Guide. That looks amazing. Hope it is available in the U.S. sometime soon.
Now suggestions of a couple of things: 1). More exploration on the ramifications of mitochondrial dysfunction, all the factors that affect that, and how it can be addressed (so far, all genetic abnormalities affect mitochondrial function). 2) Learn about Stephen Kaufman's Pain Neutralization Technique work on rapidly, effectively improving vagal function. I believe it works reflexively via its effect on the fascial system primarily, but also probably the nervous system.
By Milan Hoste
Dear Gary, I really enjoy and admire your educative posts. Thanks to you my lectures at University and my private coaching are better.
By Dennis S.
I am 45 years old and I was diagnosed with Parkinson’s in 2015, at an age of 39. I always thought about chronical stress as a possible reason for Parkinson’s and recently I discovered the Polyvagal Theory. I guess similar to you, the parallels between Trauma and Parkinson’s seemed to be quite obvious to me. I had the experience that Somatic Experiencing can be helpful. Later someone recommended your website to me and I feel excited that you see it like I do. Thank you for that. it is always good to know that someone is sharing your point of view. I will read through your articles.
By Jacob Kidney, Essential Movements Yoga for Parkinson’s/movement disorders (ET/Dystonia)
I really love reading everything that Gary Sharpe has to write about his experiences with Parkinson's. He is always spot on. I know this is true from my own experience as well. My symptoms are always worse when I don’t sleep well. I love what he says here about sleep being the foundation for symptom reduction and moving in a positive direction.
So what can we do to have better sleep? I would love to hear what everyone does to help them sleep better.
For me, doing some sort of intense exercise earlier in the day and followed by a few different deep relaxation techniques/routines in the evening have dramatically changed my sleep patterns.
My sleep patterns were always very inconsistent all throughout college. Between working full time and full time school I would often go for three or four days at a time with only sleeping three to five hours per night. This pattern persisted for more than four years. It resulted in my tremors and overall health getting worse.
It has taken me two years of persistence to correct these dysfunctional sleep patterns to the point where I can manage my symptoms much more effectively and have begun to move in a positive direction.
This has been done by doing intense exercise every day. This can include biking, running,, hiking, weightlifting, yoga, etc. you need to effectively use the adrenaline in your body or else it is going to exacerbate your symptoms.
Then in the evening I will try a number of different things to help my body wind down and prepare it for sleep. This could include deep breathing, meditation, Yin Yoga, Restorative Yoga, and Yoga Nidra. I always have an air mister defusing essential oils and gentle soothing music while falling asleep.
Also, scheduling daily free time to rest and take a nap if I need it has been invaluable. Especially, right after doing intense exercise.
By Darrell L.
REM sleep behaviour disorder (RBD) and the onset of PD
I stumbled on your site while probing the internet for info relating to a sleep disorder known as REM sleep behaviour disorder (RBD). This has been a fixture in my life since I was a child...and has continued into my middle-aged years (I'm 37 now). At times it's been a mere curiosity as it doesn't noticeably disrupt my life to any great extent; however, in the resent years I've been sharing a bed with a partner who is somewhat less of a deep sleeper...so I've been hearing more about my night-time adventures. The curiosity took a bit of a turn when my reading suggested that RBD is a very common marker for the onset of PD. Statistics range from 80-90% of those who develop RBD receiving a PD diagnosis within 10 years. Interesting. From there, I started to investigate possible therapies/treatments. Currently, the sleep disorder could be considered ideopathic. Very little is known about the origins. Aside from lifestyle changes (diet, exercise, caffiene/alcohol intake, sleep hygiene, etc.), Clonazepam is recommended. There's an aversion to this treatment for obvious reasons. Melatonin is another potential option, as is, full spectrum CBD. Beyond these suggestions, there's not much else; however, Clonazepam is used to treat anxiety, so it got me thinking about the potential emotional links that may be embedded in the disorder. This got me thinking about Gabor Mate and his book, ''When the body says No.'' So, with PD and Gabor, I found you!
Such a wealth of information. I've only just scratched the surface, but feel a wellspring of gratitude that it's here. Just delving into the Polyvagal theory...and trying to put together some ideas for a course of action. I don't know that I'll develop PD, but so much of the material here rings true for me...so it's got me thinking about what I can do now.
I'm wondering if you've got any material on this link that exists (PD and RBD)...or if within your network you've encountered those who have story that's similar to mine.
Thank you so much for sharing your own journey. Such a helpful resource.
By Theresa Conroy, C-IAYT (certified yoga therapist by the International Association of Yoga Therapists).
Gary Sharpe's website provides something invaluable to my Yoga Therapy clients with PD: informed, personal experience. My clients are engaged and knowledgeable about their disease, but they crave real-life input on treatments and wellness. Gary does that with clarity, style and humor. That's why his site is one I often use as a resource for my students.
By Babs Meade
Thank you Gary ! Your work is informing my work and life. As a healer-bodyworker, neuromuscular integrative movement therapist, Acupuncturist nerd, Esogetic Colorpuncture person with neuroimmune issues - addressing trauma awareness and recovery for people. Trauma-shock, shake, Reaction Patterns, Adaptations, Addiction. Sorting these out...sorting out strategies of recovery. Nourishment, laughter, music, art, emotions, Soul, Body, Spirit... thankyou Gary Sharpe for your excellent life’s work
By Olivia Streater Lavizzari
I spent the day reading your blog and videos -- SO profoundly MOVED AND AMAZED by what you are doing! It is incredible and wonderful. I wondered if you have the new(ish) book Clinical Applications of Polyvagal Theory. In the chapter on strokes by Deb Dana there is some great stuff that I think could also be applicable to PD. A lot of which you already cover in your blog; things like frozen facial expression etc. Very glad I came across and shared with my professor, who is researching use of Flamenco and Tango in dance movement therapy PD interventions.
By Rick Potvin
Your site was the very first thing I read the day I came home from the neurologist with my diagnosis of PD. It gave me so much hope and inspiration that I started the very same day on program of strenuous exercise, diet, etc. I actually picked up my guitar, my one true passion, and thought I can do this. Two years latter I'm still doing it thanks to your insight, research and sharing of knowledge.
By Cheryl Nicholson
I’ve been very inspired by these posts. I have a Parkinson’s client who was in a wheelchair and who would crawl to get places. He’s now able to get up and walk to the washroom on his own. He even went out and shoveled his driveway. We are using targeted nutrition, intentional movements, red light intranasal therapy and Natural Bioenergetics to improve his life. He still has days where he goes backwards, but overall things are headed in the right direction. Many thanks for reporting on your own progress and providing information that helps others!
By Kay Pyke
Did a quick search this morning and found the website which has so much info that I’ve been looking for. My husband has just been diagnosed and I’m researching how to help him. This is so inspirational and I’ve forwarded it onto our neuro physio. Oddly enough she came today armed with hand exercises which is what led me to this website. I’m in tears. So happy to have found you.
By Adam M.
Gary, I want to say a huge thank you for your website! It has been a big help. I’ve changed my diet to fit Dr. Mischley’s recommendations generated by her research. I also bought the smovey rings. Right now I’m doing a Feldenkrais style movement intensive which seems to be helping.
By Sue Watson, Sue Watson Craniosacral Therapy
Hi Gary,
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).
Kind regards, Sue Watson (Scotland)
By Consuela Harper
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! :)
By 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."
By Mildred Atanasio
Hello Dr. Sharpe, I am very glad I came across your videos and messages on facebook! I just want to say a huge thanks as all your info is very useful. My mum was diagnosed last year. In Malta, even medication is limited. But anyway, I have lately also started helping out with managing the page Malta Parkinson's Disease Association, which tries to bring Maltese people with PD (and others) together. I find your articles (and especially your improvement) very admirable and much more helpful! Thank you once again.
By Julie Brown Sheil
I really admire this man. Gary Sharpe is a Warrior in the fight against Parkinson’s Disease.
He has been tirelessly researching therapies and documenting their effects along the way so that others can witness how he is healing himself. He also shares them with the world so that others can benefit from them, too.
He has refused to let doctors convince him that there’s nothing that can be done to slow or reverse symptoms. He has refused to become a victim of, or defined by, his disease. The best part is, he’s winning. He’s improving his quality of life (and that of others).
I follow Gary because once I found out I had neurological disease from Post-Concussion Syndrome, I began researching ways to help myself. Even though I don’t have Parkinson’s, I do have a chronic disease and I have found all of Gary’s insights (listed below) to be true in my case as well. Doctors don’t know everything. Specialists only know their specialty. Doctors chase symptoms rather than chasing the cause of the symptoms. Patients who are intimately involved with their own healing do better. Patients who think outside the box can make some impactful discoveries, not only for themselves, but for others.
It’s a sad state of affairs that patients are left to navigate their own recovery and healing. But it can lead to some amazing discoveries.
Gary is the reason I started my Mind Matters Mondays posts. I want my journey to be able to help others, to make it a little less likely that someone will have to struggle to find answers or relief the way I have.
Thank you, Gary, for all that you do!
By D. Hutton
I experience chronic pain on a daily basis due to chronic disease. Chronic pain is mentally and physically exhausting. Part of my self care is co- regulating my nervous system with my husband everyday. We sit quietly, calmly together and observe how our bodies feel, just breathing/existing. We are in physical contact, sitting on the couch. We practice observing how our thoughts, conversation and emotions affect our nervous systems. Sometimes I get very anxious if he shows empathy when I don't want it. Sometimes we just sit quietly. I actually resisted the co regulation aspect of the poly vagal theory, but you were so persistent with this information that I finally tried it out. Life is so much better now!! Thank you for your persistence, dedication, and information Gary Sharpe!
By Brandon Knight
Outstanding information, you are very helpful as you explain what you are feeling in a clear way. Thanks for putting in the effort to make these. Disconnect between the brain and body feels about right to me and I will be making some devices for myself to test out. Just started with sinemet and I am 40 so far it has been a big help my right foot has been about like yours since I was 34. I am not even sure if I have Parkinson's maybe some other dopamine issue have dat scan scheduled seen multiple neurologist and they have not been able to pin it down they are going off medication response at this point thinking it might be a dopamine responsive dystonia. Any way just wanted to thank you for putting these together and explaining that the medication on its own will not be enough. The sinemet gave me to mobility to move with less pain so I can work out again as well as helped me think more clearly but I do believe that it is what you do with the room the medication buys you that will make the difference although I understand we are all different. Thank you again for posting these they do help.
By Simon Clarke
I came across your website at a very opportune time - much of your research, information and experience corroborate my own. Many of the PD symptoms (before and after life hacks) you demonstrate in your videos bought a smile to my face, seeing someone else taking a proactive role and showing real progress. Thank you!
I was diagnosed with idiopathic PD at the age of 48. As you know- getting that diagnoses and prognosis ruined my day... and the rest of my life (or so I thought). I went through the various stage of grief and went on Meds with resignation to my fate.
However about 2 years after diagnoses, I had an epiphany (of sorts) and realised I no longer needed to be a victim as there must be some way of alleviating and/or slowing down progression. This led me to shiatsu, yoga, yin tuinna, mindfulness, meditation and to Zhineng QiGOng which I have been doing for the least 2.5 years with great success. During this time, I have searched the web relentlessly (PD trait!!) and come across some useful info..
However I think your website is one of the most comprehensive resources I have seen of all the information and practical, holistic guidance collated in one place. It’s a very useful place to start when looking for a way through PD that encourages the understanding and healing of the entire BodyMind system.
The last week I have been reading Norman Doige's book-the brains way of healing. Full of good information
By Ken Howard
May I also add my humble gratitude for all you are doing to help us tackle Parkinson’s. In a recent “Live Loud” session organised by the Cardiff branch of Parkinson’s UK, we were asked to nominate someone who has inspired us to fight against this pernicious disease. I nominate you, Gary! You have shown me that we should not give in and accept the inevitable, but should keep on fighting! Rule 1 in any battle is “know your enemy”. You have been tireless in exploring all the potential causes - physical, chemical and psychological, and sharing your findings with us. Secondly, you have amazed us with your enthusiastic approach to trying any potential treatment, no matter how obscure it may seem. I am trying out many of these, principally the exercise, diet and mindfulness related therapies. These have helped me significantly, and I’m particularly interested in your research into the Vagus nerve issues. Please keep up the good work - I shall keep on fighting with you!
By Tina Gebhart:
Gary, I may have been researching before finding your page, but your consistent encouragement, posting of your supplement and exercise trials, and general can-do attitude have been super motivating for me. I would not have gone gangbusters on this fish oil and fasting thing if I had not seen your experimental models. I may not have built up the nerve to go against my first neurologist and then find a better, awesome one. Thank you a million times over. I consider you my big brother, as sappy as that may sound.
By Gregory Layer:
Gary, you are a gift to this world. Your effort to connect the dots of our daily life and daily choices to our long term health and how disease manifests in our bodies is making a huge difference in my life. I am inspired by your work but more importantly, I am inspired by the spirit with which you share your experience with others. Keep up the great work and know that you are loved and appreciated, just as you are!
By Ann Ostrander:
I am reading/gleaning invaluable information...PD is truly multi system...I have incorporated much of your data into my husband's care. We met with neuro this week and the doctor was surprised at the level of improvement!
By Liz Ivory:
Gary I totally agree👍 gaining Freedom to truly listen and connect to our body's wisdom and to move uninhibited whilst being present to the experience and the joy of being Enough and being alive👍
As I often say if being you and being alive aren't enough...nothing ever will be😘
Enjoying your future discoveries already
By Dave F.
Hi Gary, I just found your Parkinson's online information a week ago or so. Your perspectives on a potential root cause of PD being related to trauma, stress, inhibited parasympathetic system, etc. seems synergistic with my path to address my PD. Although I do not call it PD anymore. I call it being "stuck on pause". I have a list of over 150 things I could be doing (does not include pharmaceuticals), and the therapy I am primarily focused on is based on the books "Recovery from Parkinson's" and " Stuck on Pause" by Janet Hadlock (available as pdf's on pdrecovery.org). While I address symptoms with 2 hrs of exercise daily, meditation, clean vegan diet, etc... my approach to recovery is getting unstuck. Unstuck from a norepinephrine/adrenaline based nervous system back to a parasympathetic/sympathetic balanced nervous system. Are you familiar with Hadlock's work? If so, what might be your perspective in relation to your findings? If not, I created a 2 page overview I can send if interested... or you can download the books for free.