Category: World Parkinson Congress 2019

Gratitude for a very full, successful year

On By skrischerIn Inspiration, Living Well, Parkinsons Disease, World Parkinson Congress 20193 Comments

Acknowledging the good that you already have in your life is the foundation for all abundance.

“Eckhart Tolle

I have a dear friend who is always cheerful and upbeat. What is her secret? Her ritual every morning when she wakes up is to express gratitude for the things in her life. It’s that simple. Apparently she is not alone. When looking for quotes about gratitude, there were many like this one from Oprah Winfrey: “Be thankful for what you have; you’ll end up having more. If you concentrate on what you don’t have, you will never, ever have enough.” 

As the year comes to a close it is often a time of reflection. We look at what we have accomplished in the last year. What we did not get done, in spite of our best efforts. But most of all, it is a time to express gratitude to those who have come into our lives, and gratitude for the things that we have in our lives. Yes, even if you are living with a progressive disease like Parkinson’s, there are some things that you can be grateful for. If you don’t think so, I challenge you to look around and you will find someone or something that you can be grateful for. And if you can, write it down so that you can look at it again next December. Hopefully, like Oprah, you will have more things to be thankful for.

Here are some of my reflections about the past year and what I am thankful for.

First, I want to express gratitude to my family and friends for always being there for me, supporting my in my endeavors, coming to Parkinson’s events with me and not letting me be a “sick person”. You insist that my life has not changed because of PD, so there is no reason to make accommodations. You encourage me to be independant. And I thank you for that.

This fall marked 11 years since the start of my Parkinson’s symptoms. My diagnosis was confirmed a year later by my wonderful Movement Disorders Specialist at UCLA. At the time, she told me that because I was tremor dominant, she thought I had a very slowly progressing type of PD. And she was right. My meds have calmed my tremor, and most people are surprised to learn that I have Parkinson’s. For this I am very grateful.

I have been fortunate to be able to take advantage of many learning opportunities for People with Parkinson’s. 5 years ago I attended my first Fox Foundation event in Pasadena, CA, which opened doors for me. I learned about boxing for PD that day and started a class a month later in Santa Monica, with what is now called Stop-PD. I have been going to boxing ever since. Unfortunately, in the past 5 years, there have been many times when I am the only woman in the class. Those women who attended quickly became friends. And the guys….well, they have been great. Thank you for all of your support. I love being with all of you. You are an important part of my week.

This year marked the 4th anniversary of a group that I started for women with PD in Los Angeles, which is now called Twitchy Women. We are not a traditional support group. We are more activity based, whether it is exercise, a talk by a psychologist, speech therapist, sex therapist or just exploring our creativity and just having fun. The friendships that have been made through this group are wonderful. And the most exciting news in the last few months is that several major Parkinson’s organizations like our concept so much that they have asked us to encourage other women to start similar type groups in other areas. If you want to start a group where you live, please contact me. I am not only grateful for what this group has given back to me and the other women, but am looking forward to expanding the concept and reaching a wider audience. Thank you to all of those special women who have come into my life because we share the common bond of Parkinson’s.

In June, I attended the World Parkinson’s Congress for the second time. This time the WPC was in Kyoto, Japan, so Mr. Twitchy and I, along with good friends that we travel with every year, took a cruise from S. Korea to Osaka, Japan and then spent 3 days touring Kyoto prior to the conference. Our trip was wonderful. Our friends went on to Tokyo and we attended the WPC. There I got to meet many other bloggers who I have only known on the internet, as well as quite a few followers of my blog. I submitted an abstract which was accepted and created a poster for the poster display. That was a lot more work than I expected. I probably won’t do it again, but I am glad that I was able to do it. But the most exciting part of the WPC for me was that Roni Todaro, VP at the Parkinson’s Foundation, was asked to give an early morning talk about the study she had asked me to co-chair, titled Women & PD TALK. Not only did Roni mention me, but highlighted me in her powerpoint presentation. Roni, I can’t thank you enough for the amazing shout-out!

Because of the new relationships with other bloggers that were nurtured at the WPC, I have had the opportunity to participate in several podcasts, conferences, webinars and more. It seems that the more involved you get in the PD community, the more it opens your world up. We are a small but mighty international group of people with Parkinson’s. We support each other, problem solve together, and reach out to others who are new to our community to ease their path on this journey with Parkinson’s. We are living proof that no one needs to go through this alone. And for that, I am extremely grateful.

It has been a busy year, with many gratifying experiences for me. This is not the future I could have imagined 10 years ago, when getting a diagnosis of Parkinson’s Disease meant losing the ability to live a normal life very quickly. With all of the latest developments in research, people are living better and living longer with PD. Maybe this will be the year that the cure is finally found. And for that, we will ALL be grateful.

This a wonderful day. I’ve never seen this one before.

Maya Angelou

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

On By skrischerIn Education & Advocacy, Inspiration, Living Well, World Parkinson Congress 2019Leave a comment

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

On By skrischerIn Exercise, Inspiration, Living Well, World Parkinson Congress 20191 Comment

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!”

On By skrischerIn Inspiration, Living Well, Parkinsons Disease, World Parkinson Congress 2019Leave a comment

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’s “Images 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

On By skrischerIn Living Well, Parkinsons Disease, World Parkinson Congress 20192 Comments

 

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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