Here’s my trip report from the 3rd annual Parkinson’s Recovery summit held this past weekend in Santa Fe, New Mexico.

First, Santa Fe is an amazing and beautiful location, made even more magical by falling snow on the first day, Friday (magical meaning coming from California – is this really snow?!). As those of you know who experience stress and anxiety like me, it takes some effort to embark on a journey out of town (so many things could go wrong!) but once at the destination, it’s worth the effort. My wife and care-partner accompanied me and for her one of the highlights of any PD conference is getting to chit-chat and compare notes with other care-partners.
My approach to any conference is if I can come away with 2 or 3 new good ideas then I’m very happy and excited and this conference did not disappoint.
I’ll go into more detail later but a few of the conference highlights included:

1. Getting to listen to Marlene Lindstrom give an amazing and inspirational presentation for 90 mins. on the topic of LDN (Low Dose Naltrexone) and how it reduced her PD symptoms. She was vibrant, dazzling and full of energy and good health and looked awesome.

2. Getting to meet and compare notes with other PwPs who are open to explore tools and practices to improve quality of life and promote wellbeing.

3. Getting one on one time with some of the presenters – I chose to get a private coaching session with Kevin Lockette, a physical therapist from Hawaii who specializes in movement and exercises for Parkinson’s. He really knows his stuff and gave me some great exercises to improve my posture. He has a DVD “Move It!” for PD and is a mainstream guy who works with neurologists and the NPF.

I will attempt to describe why I think anyone with PD would have benefited from this event and should perhaps consider attending next year. BTW all presentations were videotaped and I believe may get posted online for free, although watching a 90 minute presentation on a computer screen never works well for me, I get distracted too easily at home.

There were 2 parallel tracks at the event with a total of 18 different presentations and so it was only possible to physically attend 9 – with my wife there we were able to split up and compare notes later if there were 2 competing talks. However some talks had a high “woo woo” factor for my cynical English thought pattern so I actually only attended a total of 6 talks – choosing the best ones relevant to me. Also getting up early on a Sunday for an 8am talk is not my idea of fun! Quality not quantity. Here’s what I attended and my key take-aways:

1.“Releasing Pain and Emotional Stress” – John O’Dwyer. He was a computer programmer for 37 years and his wife has PD. He talked about how emotional issues, stress and trauma are tied to our pain and Parkinson’s and presented some techniques to help with relief. One technique involves EFT tapping which is free to learn and do, but perhaps not for everyone (moderate woo factor score). I liked this guy and will look into some of his ideas.

2.“Neuro Feedback” – Jaclyn Gisburne. Her talk also discussed how the effects of traumatic events, perhaps even from early childhood, could influence the Parkinson’s condition. One interesting topic she discussed was the use of “Eagala horse therapy” – where a PwP was introduced to some horses and one of the horses picked up on the person’s tremor. The 2 connect and there’s some “healing” takes place. The 2 times I attempted to ride a horse long ago were not good so maybe I should look into this! You can google “Eagala” to learn more. Eagala is a non-profit organization in which horses are used in the treatment of mental health.

3. “Qigong for Parkinson’s” – Bianca Molle and Mingtong Gu. These were 2 separate presentations both covering the healing properties of a Qigong practice. Bianca is a former school teacher who claims to have healed her symptoms of Parkinson’s by a daily 3hour practice and guess what, I believe her! I’ve met her in person, taken a one-on-one class with her and she’s a delightful high energy former PwP and very credible. Her neurologist no longer wants to see her! Mingtong Gu is from China and this guy is “Mr. Qigong”. His whole session involved us doing a variety of qigong exercises and movements to awaken our minds and bodies – a good thing since his talk was the last of the day at 4pm. Now here’s the amazing part for me – for the past year I’ve had some pain in my right shoulder whenever I extend my arm backwards (putting on jackets, reaching up etc.) It’s been getting worse, so much so that I went to the Dr. a few weeks ago (a rare thing for me) and have scheduled a series of physical therapy appointments. Mingtong led us through some warm up exercises to “activate” our Qi (or Chi) and guess what – after doing this for 5 minutes or so, my shoulder felt much better for the next several hours. So much so that during the talk I stood up, went to the back of the room and played around with my arm to convince myself it was real, and it was. Well, that’s my success story and I’m hooked on Chi!

4. “Deciding Success with Parkinson’s” – John and Bernadette Baumann. John is a former Exxon trial lawyer, inspirational speaker and a PwYOPD – his focus is on diet and exercise beyond our comfort zone. His goal is to be the slowest progressing PwP in medical history and guess what, he looks great. His message is don’t exercise, but train – push yourself with higher intensity to get best results. Have a goal and decide success. He walks the talk.

5. “Heal PD with LDN” – Marlene (Lexie) Lindstrom. Lexie is the “Poster Child for LDN” – anyone who looks that good at that age (yes, during her talk she told us her age – wow!) and of course she’s well known to the PLM group. She shared with us her remarkable healing journey and handed out a packet of useful reference material. She also introduced us to a lady in the audience who shared her own LDN success story – this person similarly looked great and told us she is working with neurologists from Duke University to document her results.

What were my 4 key learning’s from the conference? –

1. We all must exercise and push hard at higher levels of intensity and get out of our comfort zone. I used to go to the gym and do the same 30min exercise program on a stationary bike. Now I set goals and aim higher. I’m no doctor, so please consult with your physician before starting this.

2. Qigong is easy and free to do (youtube it) and really gets your energy flowing. You can do this sitting down if you need to and the long term results are very beneficial for PD.

3. If I reach the stage where my quality of life demands drugs – I will start off with an LDN program.
4. This may stir up some people – but almost all the presenters that I heard expressed a belief in a higher power/universal consciousness or whatever you want to call it. So there!

Finally I must thank and acknowledge the work of the conference organizer, Robert Rodgers, Ph.D. He did an amazing job to pull together all the presentations. His mother had Parkinson’s and his passion is to help persons with Parkinson’s feel better using approaches that are natural and have no side effects. He has a free weekly internet radio show – sometimes the topics and presenters are “out there” and other times it’s just plain good useful stuff for us PwPs. You don’t have to listen to every show! Also each show is archived so you can download. He’s definitely not in this to make money!

So there you go – if you’re still reading this far – get up, run outside and do some stretching and breathing!

-Brian