Living Well with Parkinson’s Disease: the Patient’s Point of View

One of the great things about the World Parkinson’s Congress (WPC) is that People with Parkinson’s (Parkies) are encouraged to submit an abstract for the poster displays. If you are familiar with medical conferences, many do not include the patient’s point of view, just the scientists or researchers. So I decided to take advantage of the opportunity and submitted an abstract to the WPC on Living Well with Parkinson’s. The abstract was accepted and the next step was to actually do the research and produce a poster!

The following is a summary of my research methods and the results. There were not really any big surprises, but the important thing is that it opened up a conversation for People with Parkinson’s to give their point of view about what works for them day to day in their journey with PD, not what their doctors or their care partners say.

Objective:  As a blogger who writes about living well with Parkinson’s, I was curious about what other Parkies think contributes to their continuing to live well with Parkinson’s. 

Method:  I asked two groups to participate in the survey. The first was a Facebook group for Women with Parkinson’s Disease in November, 2018.  The second group were readers of my blog, Twitchy Woman, which is a mixed group. I posed the following question to both groups:

Please list the top 3 things that help YOU to live well with Parkinson’s. Then the flip side – the top 3 things that are obstacles for you:
For example: 
Positive: Exercise, Advocating for myself with my doctors, Friendships with other women with PD. 
Negative: Poor sleep, Tremor gets in the way of doing things, Daytime fatigue

Results:  There were 140 responses, 70 from each group.

ON THE POSITIVE SIDE:

EXERCISE IS THE SINGLE MOST IMPORTANT CONTRIBUTER TO LIVING WELL WITH PARKINSON’S – DWARFING ALL OTHERS. Medications, Emotional Support from family, friends, and especially friends with Parkinson’s, followed by a Positive Attitude were also important.

ON THE OBSTACLE SIDE:

DAYTIME FATIGUE AND INSOMNIA WERE THE BIGGEST OBSTACLES Many Parkies cited sleep challenges as their biggest problem, with 63% responding that lack of sleep and fatigue were a major obstacle for them.  Only 4 Parkies reported positively that they get enough sleep.

The effects of lack of sleep often cause other symptoms to flare up or become more severe. Balance and Gait problems, including falls, were the second most named obstacles, with Anxiety close behind.   Many other symptoms were mentioned such as constipation, dyskinesia, off times, as well as lack of PD resources in their area.

Conclusions: 

According to People with Parkinson’s: Getting enough sleep and exercise are the most important factors for living well with Parkinson’s Disease.  Lack of either will have a cascading effect on the severity of their symptoms day to day.

At the WPC, I was given a 2 hour time slot during lunch on Wednesday to stand in front of my poster and talk to people about it. I enjoyed seeing what other Parkie’s presented on their posters. And it was also a great way for me to meet other people, many of whom are followers of this blog. For those of you who came to my poster just to meet me, thank you. It was great to talk to you and I really appreciate your support.

The next World Parkinson’s Congress is in Barcelona in 2022. I don’t know if I will be submitting a poster again, but at least I can say that I did it!

I can check that off on the list of things I never thought I would do. That list keeps on growing, thanks to PD.

Warning: The results of this survey are from a compilation of comments from People living with Parkinson’s disease. The responders were self-selected, so they may not be representative of many others with PD. Please do not make changes in your medications or other therapies without speaking to your doctor first.

The Crane Dance Project for Parkinson’s

As the Soaring with Hope for PD Parkinson’s project took off, one of the team members for that project, Clara Kluge came up with yet another way to engage People with Parkinsons (PwPs) for the World Parkinson Congress(WPC). Because she loved to dance and was involved in dance classes for PwPs, she envisioned having PwPs and the community at large create dances using cranes as the theme. Her dream became the PD Crane Dance Project. David Leventhal, the co-founder of Mark Morris Dance Group’s Dance for PD® Program, became her mentor on this endeavour; he calls Clara “the force behind this project.”

And she truly was a force, inspiring so many to participate in the project. Clara invited People with Parkinson’s from around the world to submit a 2 minute video of an original dance inspired by the origami cranes that she folded and sent to those who requested them. Expecting to receive about 50 videos, she received 147 from 17 countries. This added up to a whopping total of 5 hours of video! Over 1800 dancers participated from around the world. The two videos were shown on a continuous loop at the WPC at the Soaring with Hope exhibit and the Dance for PD® Program Booth.

Some of the spin offs from the project are that it inspired dancers to:

  • Learn how to fold origami cranes
  • Write poems about the experience
  • Dance more, move more
  • Tap their inner creative spirit
  • Make stronger connections
  • Feel connected with other dancers from around the world
  • Collaborate with fellow dancers
  • Not feel alone
  • Get excited about doing something positive for themselves
  • Get a tattoo of an origami crane

This project was such a success that Clara is looking into making a documentary of the whole experience with the many dancers and dance groups who participated in the original creation of this project. 

Origami Dance
Japan Parkinson’s Disease Association Fukuoka
Invertigo Dance Theatre, Los Angeles, California

To view more of these inspiring dances, go To YouTube and search Crane Dances Parkinson’s and a number of dances will appear.  I will keep you posted when and where you can see all of the dances.

“Listen to your body!”

We are finally getting caught up from our trip to Japan. Since returning home, Twitchy Woman has gotten a lot of press. This is very exciting!!!

Just out in Doctor’s offices is a magazine published by Health Monitor. The “Guide to Living With Parkinson’s Disease” is distributed free to doctors offices in the US. The article: “We’re doing what we love!” features me along with two other women with Parkinson’s.

Unfortunately this guide is not available on-line, only in print. If you would like to see a copy of the entire magazine, please email me at twitchywoman18@gmail.com and I will send a PDF copy to you.

Parkinson’s Life, an online magazine based in London, published “World Parkinson Congress 2019: the travels of ‘Twitchy Woman” on June 20.

Photo from WPC with friends and Parky is featured in the blog post.

Farrel, Sharon, Elpidio, Naomi, Parky and Clara in front of Soaring with Hope for PD

The same photo of Twitchy Woman with friends at the WPC also showed up this week on Speakmedia’sImages of the Month” for June. Speakmedia is the parent company of Parkinson’s Life.

I want to thank all of you for being loyal readers. None of this would have happened with out you. Your support, comments, emails, etc., have encouraged me to continue writing Twitchy Woman over the last 4 years. Let’s keep the dialogue going.

!

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

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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