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:
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.
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.
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.
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!
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.
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.
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)
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."
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.
Julie Brown Sheil
I really admire this man. Gary Sharpe is a Warrior in the fight against Parkinson’s Dusease.
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!
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!
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.
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
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!
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.
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!
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!
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
Margaret Yo My journey truly began with the good news I read in Gary Sharpe and that led me to David Spry and PDFU. Which led me to Wahls and Mischley. I read Glen Pettibone's eBook and was hooked on the idea of healing, of doing it for ourselves. It is a far more attractive prospect than the conventional approach. I am grateful for having stumbled onto this path. While I would wish for a complete and permanent cure, who wouldn't, decreases in symptom expression and reliance on medication, with an increase in functioning, etc, are well worth the effort.
Jackie Potter I have twin girls aged 12, a husband who works long hours, limited family support but so fortunate to have amazing girlfriends who make me laugh (so very important as you have covered in previous articles Gary).
I could not agree with your more about stress affecting medication, movement and pain, i.e. increases the latter and makes the other two ineffective. I have had Parkinson's for 7 years and I have spent a considerable time getting rid of as much stress as I can control (I won't go into detail on the control aspects as we are all very different).
What has helped me and still does on a daily basis:
Doing the things I love, gardening, painting, craftwork - makes me happy;
For relaxation I use calming zen music, yoga, meditation, breathing exercises;
For exercise I cycle, walk and use a weighted hoop for stretching and hooping.
When I am in a stressful situation, I use Faster EFT and I get am immediate response which allows me to move normally again.
Nutrition is an area I am working on and I appreciate all the information you are sharing Gary, it really is keeping me motivated. I see a Neurological Consultant only once a year and a Parkinsons Nurse twice (to increase my meds) so fairly minimal support.
This forum is so helpful to so many. Sharing individual experiences allows us all to tap into information and as individuals we can choose to try various foods, exercise, stress tools etc. etc.
I hope that maybe one day we could organise a gathering of like minded people for a day or even better - a weekend where we could support each other in an environment open to sharing freely experiences and demonstrate many of the tools you have tested and commented on.
If I could turn the clock back Gary 2 years when I raised a lot of money on a charity walk, I would pledge the money to you because you are doing something Now, Today, this Minute and being brave enough to share your research, opinions, videos and be so inspiring.
Thank you, again and please don't give up! I too want to come off meds and I too strongly believe we can heal our bodies with the right ingredients of exercise, foods, practicing calming techniques and definitely surrounding yourself with positive, supportive and happy people. Thank you.
Jahred Boyd Gary, I know many doubt these techniques as helpful but they are a Godsend for me. Hard for me to verbalize and write but I am able to accomplish physical acts that were out of reach for me years ago. About a week ago I delivered a foal from one of my mares in distress all the while my nephew live streaming it to FACEBOOK. When I watched it minutes later i realized I was moving quite normally, movement was fluid and I was successful. Check-out Tim McCormicks video of colt being born. Mom and baby doing great! Really helped my self esteem and confidence in ability to continue to care for my precious animals that keep me going!
Gilbert Paniagua: I'm sure I speak for many, Gary, of how much your posts are appreciated, helpful, and very insightful. I'm especially appreciative that you use yourself as a "human guinea pig" and pass along both the good and bad results. I hope you feel better and I'm glad you're fighting not just for yourself, but for all those afflicted with this terrible disease. I'm honored to fight along with you.
Poldi Dell Thank you so much, I've been treating Parkinson's patients for over thirty years through my dental office. I've seen them through the initial diagnosis until the end, and until my own husband was diagnosed 6 years ago with a very fast progressing type; I had no idea what these folks had to go through just to get to my office. And until I read your post today I did not have an understanding from my Husband's point of view of how he is feeling.I do now and boy let me tell you your expressiveness is overwhelming . Thank you again from the bottom of my heart, we've been married 27 years and because of you I have hope for many more. God Bless.
Alison Hindhaugh: You are an utter giant - keep on moving Gary! We have this challenge in the family so it's totally inspiring to see your research. I basically go along with everything you are discovering - way beyond traditional approaches with mega emphasis on music for neurological stimulation. I totally concur. Keep moving
I find Gary Sharpe's recent posts to be compelling and it caused me to reflect upon my own inflammation history:
2010 - I developed sudden severe discomfort in my urinary tract, basically the constant sensation of needing to pee which was eventually diagnosed as chronic inflammation of the prostate gland, known as prostatitis.
2012 - I started to develop sudden severe abdominal pain after eating certain foods, which has since been identified as IBS.
2014 - my right index finger started twitching and was eventually diagnosed with Parkinson's in December that year.
To me it now seems apparent this is a pattern of progressive inflammation and fits exactly the pattern described by Gary.
I honestly think that this is game changing thinking for at least my sub type of PD.
As a footnote since starting Sinemet in January I've noticed only minimal benefit.
Penny Mitchell Gary! I love this post. Your writing is getting better and better too. This post is very compelling for me. I have been in a very dead and hopeless place lately, and feeling like there was no way out. But this new phase of Out Thinking Parkinson's that you are embarking on here is striking a chord deep inside me. Thank you for your life affirming leadership
Thanks for your insight Gary. My lovely wife Lynn has Parkinson's but like every other experience we have shared over the last 39 years-We are in this thing together! You sharing your personal experience with me helps me better understand what's going on with Lynn. And sometimes helps us stay centered and somewhat calm when those tough days occur. Thank you my friend.
Marc M Monroe The message of hope through action you convey is absolutely the gold standard of living with Parkinson's. This will also reiterate the core concern of what so many have expressed. Simply move it or lose it. More importantly it is not too late to start.
I believe this concept repeats itself in every successful way each of us has described in our lives. It hurts to begin. It's definitely difficult to follow through.
The impact is as individual as the cocktail of present maladies associated with our branding of this Asinine Ailment. You are a Unique individual Gary Sharpe. You have been the voice of your return from the abyss.
My dear friend David Spry made a similar trek. Others have followed suit. The best resource of information comes from the interactive experience of those who are aware that medical treatment is not the end game.
With this being said. I propose a coalition of advanced support groups with intent on communication between those of us directly with the medical community. I'm not sure where to start. Even if this exists I don't believe it is inclusive of the informed content found within these groups.
What say you?