Stuck on Pause

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.

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Photobiomodulation or Red Light Therapy

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.

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Accessible Knowledge

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

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Staying Positive

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!

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Parallels with Trauma

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.

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Making Changes

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.

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Outstanding Information

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.

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Slowing Down Progression

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

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Exploring All the Potential Causes

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!

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Can-Do Attitude

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.

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Connecting the Dots

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!

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Doing it for Ourselves

By 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.

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Getting Rid of Stress

By 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.

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Precious Animals

By 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!

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Inflammation History

By Martin Taylor:

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.

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