“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.

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The Crazy Hat Lady is Back!

It’s summer time. Here in Southern California, the June gloom is giving way to the glorious sunshine that California is known for. And all that sunshine brings us both the good and the bad.  It is also time for the return of the Crazy Hat Lady!  My big hats have been dusted off and ready to be worn.

The good: Vitamin D. Soak up some rays to get your vitamin D naturally. Now that winter is over, get outside and enjoy it.

The bad: lots of skin problems, specifically skin cancers caused by the sun. For people with Parkinson’s, our risk of melanoma is higher than that of the general population. It doesn’t matter if you are fair with lots of freckles, or dark skinned. You need to be vigilant and make sure that you see a dermatologist at least once a year, more often if something just doesn’t look right.

To combat the harmful UV rays, you need to use sunscreen, lots of sunscreen. And take a hint from all of those Japanese women we saw with umbrellas in Kyoto. They had the cutest umbrellas designed specifically to combat UV rays. I had to buy one before I left Japan. The only ones I have found at home are Sunbrella, which are utilitarian at best.

So now, in addition to wearing a big hat when walking around LA, I also have a cute umbrella in tow.

Why do I take such precautions? I have had numerous skin cancers over the years. The first one, 34 years ago, was a Melanoma. Why start with the easy stuff, right?  Mr. Twitchy detected that one and sent me to the dermatologist. Fortunately it was barely a stage 1 and only required a deeper cut to make sure everything was out.

Overall, patients with Parkinson’s were roughly four times likelier to have had a history of melanoma than those without Parkinson’s

I have an increased risk of Melanoma because I have had a previous Melanoma, Parkinson’s and the BRCA2 mutation for Breast Cancer.  A triple threat.   There is an interesting relationship between Melanoma and PD.  According to the Mayo Clinic  “Overall, patients with Parkinson’s were roughly four times likelier to have had a history of melanoma than those without Parkinson’s, and people with melanoma had a fourfold higher risk of developing Parkinson’s, the research found.”  *

A few weeks ago, I went to the dermatologist for my semi-annual skin check. I found a spot on my arm that looked new and had her look at it. It had the typical warning signs: two toned, irregular shaped.This image has an empty alt attribute; its file name is image.jpegShe removed it and sent it out for biopsy. Needless to say, I was not surprised when she called to tell me that it was indeed a Melanoma. Again, it was tiny, in situ, which means that it had not spread beyond the initial site into the deeper layers of the skin. I just need to go back and have some more tissue removed.

As I said to my dermatologist, it took 34 years to get a second Melanoma. I can live with waiting another 34 years before getting another one. But until then I will still wear my big hats and now I have that cute umbrella to carry around, too.

So the crazy hat lady will be roaming the streets of Beverly Hills again this summer, Watch out! I am armed!

* People with Parkinson’s should be monitored for melanoma, and vice versa, Mayo study finds

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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Continue reading “More thoughts on the WPC: Diet and Nutrition”

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

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.