More thoughts on the WPC: Diet and Nutrition

One of the best sessions I attended was Microbiome and the Diet in PD. There were many sessions this year that focused on Microbiomes and the theory that alpha-synuclein actually starts its devastating journey in the gut and eventually travels upward to the brain in PD.

The first speaker, Dr. Viviane Labrie, of the Van Andel Institute, addressed this issue. She says that constipation or GI tract problems can occur up to 20 years before motor symptoms. Alpha synuclein aggregates may be stored in the Appendix, and you can actually see it go up the GI tract to the Vagal nerve and into the brain. Studies show that everyone has this aggregate in the Appendix, but there is 3 times more in people with PD.

The second speaker, Dr. Pascal Derkinderen stated that Parkinsons is a GI disorder, with many slides to prove his point.

But the highlight of the program for me was Laurie K Mischley, ND, MPD, Phd, from Bastyr University.   She says that nutritional needs are different for each person. According to Dr. Mischley, diet is what you put in your body, including toxicants. Unfortunately, in addition to other issues,  malnutrition is a huge problem in PD, with a much higher incidence than in the general population

Dr. Mischley’s goal in her ongoing study is to look for things in your diet that influence your progression on the PRO-PD score. The average person starts at about 580 and progresses about 50 points per year. This usually correlates with patient perceived quality of life.  You can find out your PRO-PD score here.

What can you do to improve your outlook with PD? She cited one simple example to illustrate her point: she found that PwPs eating 4 cups of vegetables a day do better than those eating just 2 cups.

If you are 20 years into your disease, you can still change the rate of progression if you change your diet. The earlier you start the more impact a change in diet will have. She says that organic food does significantly decrease the pro-Pd score. Look at the next slide to see which foods will have a negative impact on your progression of PD.

Finally, Dr. Mischley says that social health is a nutrient. Someone who gets out and socializes usually does better. Isolation is a major problem.  Studies have shown that loneliness is single biggest cause of Pd progression.  People with friends do much better on the Pro-PD scale.  Those who are lonely, fail to thrive.

See my photos of the slides below for more information.  Or go to Dr. Mischley’s website to learn about her research.

More tomorrow…..

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It Began with a Crane

Hope makes you forget all the difficult hours

Soichiro Honda

The 5th World Parkinson’s Congress opened tonight in Kyoto, Japan. With about 3000 in attendance, from 55 countries, the opening session was joyous and tearful. The opening video began with a Crane swooping down into Kyoto. The Crane, in Japanese culture, represents hope. And much of the evening centered around hope.

The winning video was titled “Keep Hope Alive” and featured the late Tom Isaacs being interviewed by filmmaker Anders Leines.

Day 2

After last night’s wonderful conference opening, I looked forward to today’s activities.  The day started with a plenary session on Alpha-synuclean, the protein in our brains that gives us the gift of Parkinson’s.  The session was very technical, and my knowledge and understanding of cell biology was limited to what I studied way back in the dark ages, coupled with the damage done to my brain by that very protein.  

The next session for me was a 2 hour stint talking about my poster to anyone who seemed even mildly interested.  This was the first time I had submitted an abstract to any conference, and the first time I had to actually talk about my own research.  The poster is titled “What are the Most Important Factors for Living Well with Parkinson’s Disease?  An informal survey from a women’s Parkinson’s Facebook Group”.(P41.11)   I enjoyed talking to the people who stopped by, some of whom are readers of my blog and made the effort to come meet me.  I stressed that my results were based on what the People with Parkinson’s said works best for them, and then what are their biggest obstacles for living well with PD.  This is the patients point of view, not what their doctors or others say is best for them.  The high point was being interviewed on video by a v-logger.  The poster will be up until Friday so stop by to find out what the results of the survey.

The best part of being here is meeting up with friends from around the world and meeting people in person who have been following this blog. Here are a few photos from the day.

Lunch!

Barrie Cleveland, v logger

With Andy Butler, Parkinson’s People

More thoughts on the WPC in Kyoto

There were many inspirational moments at the WPC.  I have already written about some of them, and will highlight a few more today.

The most inspiring speaker of the WPC was Dr. Linda K. Olsen, who gave the keynote speech at the opening.  Dr. Olsen lost both of her legs and and arm in a car and train accident over 30 years ago.   Many years later she was diagnosed with Parkinson’s.  Her indomitable spirit is amazing.  Enjoy the video of her speech from Tuesday night.  Turn up the volume, because it is a bit muted.

Thursday, June 6

Thursday at the WPC started early.  Ronnie Todaro, from the Parkinson’s Foundation was presenting at Hot Topics at 8:00 am.  Her presentation “A Closer look at the unmet needs, research and care priorities for Women with Parkinson’s” was about the Women and PD Study that I had been a co-chair of for the last two years.

Getting a shout-out from Ronnie Todaro at her Hot Topics presentation was the highlight of my day!

I then went to the PD Movement Lab with Pamela Quinn, which was terrific.  Here is the description of the session from the program catalogue:

“Using a wide range of dance moves, great music, and practical cueing strategies, we use a wide range of dance movements, wonderful music and practical cueing strategies, we challenge the body, defy our expectations, and  Challenges the body, violates our expectations, and enhances our spirit.”

Mr. Twitchy and I went to a showing of the film “Kinetics” (https://www.kineticsfilm.com/) by Sue Wylie.  Then went to get our Bento box lunches for the day, only to find out that there was a glitch with the caterer, who did not provide enough and they ran out of food!  After scrambling to find something to eat, I missed almost all of the noon talk by Nobel laureate Shinya Yamanaka on  “Current status of iPS cells and efforts for medical application”.  I will have to watch the video later.

My final session of the conference was a round table discussion on “Staying positive and engaged after a Parkinson’s diagnosis, advice from a PwP and care partner.”  I decided to check it out because one of my Parky friends was leading the discussion.  Since there was a Japanese interpreter at the session, most of the participants were Japanese and much of the time was spent translating.    I think everyone got something out of the session, but it was hard to tell because of the language barrier.  I had to leave a few minutes early to catch a train to Tokyo.

One thing I learned today is that I apparently missed some very good sessions throughout the three days for various reasons.  Will have to catch up by watching what is available on Youtube. Right now, you can view some highlights by Sarah King at by clicking here. At the end of the conference it was announce that the next WPC will be in Barcelona from June 7-10, 2022.

Game of Parkinson’s

With apologies to Game of Thrones

Image: HBO’s Game of Thrones

The back-to-back surgeries in the Twitchy household created an activity void that needed to be filled. And so, start-from-scratch binge-watching of Game of Thrones (GOT) filled the void. And that created two addicts; and the addicted need their fix. And so, when we arrived in S. Korea for a pre-World Parkinson’s Congress cruise, with the last episode having aired while we were flying, the FIRST THING we did on waking up at 5:00 am our first morning was to watch the episode we had arranged for our daughter’s friend to record, post and send us the link.

But the addiction has had other effects. I am now imagining/dreaming our collective battle against Parkinson In GOT terms. The ruler who kept the neurons in the brain functioning has died, and the battle is on to restore order. Who will win the right to sit on the Iron (Twitchy???) Throne? Ramsey Greyjoy makes us shake. The even more evil Cersei Lannister makes us writhe with diskinesias. Arya Stark fights the frozen faces. And Sansa Stark has the inner strength to endure the hidden symptoms that plague us. The sleepless night walkers are threatening to take over. Is Daenerys Targeryan making us hallucinate about dragons? And what is with Bran Stark and the third eye? Where is Jon Snow when we need him?

Ok, ok, we are not living in Westeros. There are not 7 Kingdoms in our brains fighting for the right to sit on the Iron Throne. However, there are so many different facets to PD that unfortunately cannot be controlled with just one treatment. So, like GOT, we need to find multiple solutions to make our lives better with Parkinson’s. Melisandre (the red priestess) is not going to bring back to life all our dead neurons. We need to make sure that our medications and treatments are working together to make us feel better. If they are not, then we need to find other options that do the job.

Are you a GOT fan? How does your experience with PD relate to GOT? I know its a stretch, but let’s have fun with it. Get a conversation going by replying in the comments. Who knows where it will lead…….

*If you are going to the WPC next week, come by my poster display (#649) on Wednesday from 11:30-1:30. I would love to meet you.

Exercise Really is Medicine for Parkinson’s

Even before I was diagnosed with Parkinson’s, I have always been a regular exerciser.  I played tennis, went to aerobics classes at the gym, worked with a personal trainer and then found yoga classes.  For the past 10 years, since my diagnosis, I have been more vigilant than ever about exercise, and several years ago, added boxing for PD to my regimin.

And it worked pretty well.  My PD has progressed very slowly.  Off times were rarely a problem.  Life was good.

And then I had surgery on my hand two weeks ago.  Which meant NO exercise at all for the next 3 weeks until the stitches come out.  I can’t get the dressing on my hand wet or sweaty.  So the only thing I can do is walk, which is not enough for me.

About a week after the surgery, I noticed the tremors in my hand and foot were much more noticeable.  Other non-motor symptoms re-appeared.   As the days go by, the symptoms are becoming more apparent.  The only thing I can attribute it to is lack of exercise.

I was talking to my friend, Susan, and she had a similar story. Like me, she had always exercised. After her PD diagnosis, she stepped it up and felt that the exercise really helped. And then life happened. She moved, went back east to take care of an ailing parent, and wasn’t able to exercise for more than a month. One day it all caught up with her and she “hit the wall!” Her tremors were back, other symptoms returned, and one day, she literally could not get out of bed.

Susan started exercising again and her symptoms are improving. She is not quite back to where she had been, but is confident that she will get there soon. We talked about all of the other meds that we take, and how effective they are (or not), but the one thing that we both feel is the most helpful is exercise. If we look at it as medicine, it becomes essential to our treatment for PD.

Dr. Giselle Petzinger, Associate Professor of Neurology at the Keck School of Medicine of USC, has been doing extensive research into the effects of exercise on Parkinson’s Disease and Cognition.  She is a strong believer that exercise will help those of us with Parkinson’s (and the general population as well).  She is currently running a clinical trial that I participated in 2 months ago.  For information on that study, go to my post from March 31, Clinical Trials for Parkinson’s Need You!

I am looking forward to getting the stitches out next week and getting back to exercise.  It will be interesting to see if the tremors and other symptoms calm down as a result.  I feel like I have missed doses of my medicine.  Now I need to take it again and hope for the best.

Kyoto

If you are going to the WPC in Kyoto in a few weeks, please look for me.  I will be at my poster in space #649 during lunch on Wednesday,  June 5 from 11:30-1:30.  I would love to meet you.

Also at the WPC:

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If you have some free time on Monday, June 3 before the WPC starts,  and would like to help set up the Soaring with Hope exhibit, please complete the VOLUNTEER FORM (click HERE) by Friday, May 17, 2019.

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