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.
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.
you help me so much, dad and many people I know have Parkinson's - your advice helps give hope when feeling helpless.
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?
Good afternoon Dr. Sharpe, I just want to introduce myself. I live in Flint Michigan in the colonies. I'm 68 was diagnosed with PD in February of this year after a 6 month testig period. I am a chiropractor still in practice. I have learned a lot from your video's and book. Hope to stay in touch from time to time. Merry Christmas.
Ian Weinberg: Developer and facilitator of neuro-coaching program. Neurosurgeon in practice • NeuroSurge - neuromodulation
Deb Helfrich In so many ways the story of you and Gary is a great inspiration for me personally. A convergence of all the elements which define the best of our humanity and our intrinsic potential to transcend mediocrity and inherit that sublime place of unconditional sensitivity, clarity and awe. A blessed connection!
Not quite Bowen related posts are going to be the theme of my posts over the next few days, they will be Holistic/Functional medicine related.
As many of you will know, my journey into this arena was sparked with keen interest to find alternative ways in which to help my Dad, who has Parkinson's disease, since 'traditional' methods offered (to put it bluntly) - no hope.
What I have discovered along the way has been illuminating to say the least and it has become my passion.
I do not believe that one way is better than another. What I do believe is that we must work towards an integrated system which offers the very best of all forms of therapy and medicine for all. Because they are all valid, and each of us deserve it.
Today's post is from Dr Gary Sharpe whom I had the pleasure of meeting earlier this year. Having lived with Parkinson's disease for quite a number of years, and finding (like my dad) that traditional medicine was not serving his highest good, he embarked upon a journey, thinking outside the box, to find ways in which to help him get the better of this disease. His journey so far has been a true inspiration and I hope it will inspire others to do the same.
Gary, I am so grateful to you for this particular article. I cannot tell you how enlightening and encouraged I am by your explanation about the effects of stress on PwP. I am in my mid 50's and after 32 years working in various HR and Ops roles at a fairly senior level, I have had my share of stress and always coped with strategies that I even used to train others on. Nearly 6 years living with Parkinsons I react like a sponge to all the things you so clearly listed and somehow it made me feel "normal"! What I mean is that it is just part of the changes or as many refer to 'the journey'. Thank you so much for providing as article that I feel will help me, my husband, family and friends to understand a little more about the changes I am making to de stress my life as much as possible! Not easy with lively twin girls aged 11. I find when they go to school, my husband work, I love the solitude and peaceful time on my own. Trying hard not to become reclusive but it is when I have less and sometimes no symptoms. Sorry for the length of my reply but I just wanted you to know how much your article has impacted on me in a positive and very supportive way. Best wishes.
For me, it was Gary Sharpe's posts on Facebook that first sparked my searching for non-medical answers to help me slow the progression of my Parkinson's symptoms. Looks like the holistic wellness coach and the change of food regime has started me on that path. Thanks Out-Thinking Parkinson's and Dr Gary Sharpe for the continuing information and inspiration.
A shout out to @Deb Helfrich and @Gary Sharpe. Two individuals who have dared to be brave, dared to do the difficult, dared to make a difference and have epitomized the essence of being bigger than they are. And by doing so, they underscore the good in humanity and serve as beacons of hope and inspiration to us all. Thank you for all that your dare to do. Keep making a difference.
Gary I would like to send you a personal message but I can say this at least - exceptionally well done effort - the whole thing - your effort. Diagnosed in 2012 at 56. Doing well. Love your page.
Kudos to Gary Sharpe and Deb Helfrich who stand for something, and spend their time trying to help others, as opposed to those who spend their time bitching, complaining about LinkedIn, or their favorite whipping boys. Let's congratulate those that help others accomplish things, and let the negative complainers know they are....er...kind of a waste of bits and bytes?
Some very good information that perhaps will help to teach people how to treat those with Parkinson's. Very harmful are the following: criticism about things the person with Parkinson's would like to do, or take care of, but can't any more, to be spoken to in a put down kind of voice, to cause them stress over something on purpose because you know it will cause stress, and to show impatience with them when they have to take time to speak and to try to make their voices loud enough to be heard.
And most of all -to be forgotten, because you don't feel comfortable around someone who has a progressive disease. So you don't call, write, stop by, or check on them. Their world becomes even more isolated and they feel as though they don't matter to others any more. If you care for- or care about -someone who has Parkinson's, please read the article. It might help you to understand why their primary caregiver gets a bit put out with others. We're the 24/7 care, and we're the ones who love them the most, and give them the most encouragement possible. We laugh and cry with them, we struggle when they do, we celebrate their successes and work hard on the tough times, and we live on hope for a cure. We watch for any signs of change, when time is of the essence to get to the neurologist. We listen for sounds in the mornings-are they sleeping, are they breathing, we listen for the shuffle of the feet across the floor, and know that we made it through another night. Then we start another day filled with the challenges just like the day before and the day before that. We know that we won't be going on a trip, a vacation, shopping, a ride, to an event, to see friends, or to just get out of the house.
But, we have the best son possible-he comes to get his dad and helps, he takes him home with him to spend 5 weeks of specialized therapy for Parkinson's. He gives up his vacation days to come home. So Parkinson's has a hold on him, too. Together, the three of us hold each other up, and give it our best effort to make the day a good one. This has been a long comment, but I write from the heart-and my heart has been filled with years of Parkinson's being a part of our daily lives. It can't be said in a few words.