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 firstname.lastname@example.org and I will send a PDF copy to you.
Photo from WPC with friends and Parky is featured in the blog post.
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.
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.
Hope makes you forget all the difficult hours
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.
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.
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.
It seems that once you think everything is under control, something happens to set you back. You are feeling so good about how you are doing, that you forget that you have limits and take on too much to do. (I admit that I am way too guilty of this). Parkinson’s lies in wait until you make that misstep and will suddenly torment you and increase the severity of your symptoms, or bring you a new set of symptoms to deal with.
On the other hand, maybe life is out of control. You have been doing too much and not taking care of yourself. You moved, your child got married, you suffered a loss. You may have felt organized at first, but at some point you realized you are in over your head. You just can’t do everything the way you used to without feeling it afterwards.
You find it hard to make plans because you just don’t know how you are going to feel any given day. One day you feel great, the next night you don’t sleep and fatigue keeps you down the next day.
Finally, You miss exercise for a couple of weeks because you are sick, on vacation or you just don’t have the time. At some point you realize that your tremor has been getting slightly worse every day, or you have become much stiffer. You feel as if you are on a downward spiral. Your meds are not working as well as they should, but you really don’t want to increase the dose. You just don’t feel good, and it is difficult to explain exactly what is troubling you.
What do you do to get out of a downward spiral?
1. Learn to say “no”. Get help where you need it. At home and/or at work. Don’t take on a new project that you know will be overwhelming. It’s ok to slow down a little. I know its hard – I am guilty of overdoing it, pretty much all the time. But remember, you are living with a chronic disease that won’t go away because you are too busy to acknowledge its presence.
2. Take a deep breath – practice breathing exercises, meditation. Parkies tend to be shallow breathers. Get some more oxygen to your brain and clear up the fuzziness between your ears.
3. Get back into your exercise routine. But don’t expect miracles immediately. It took time to get to where you are, so it is going to take some more time to get back in shape and feel the benefits of exercise on your brain again.
4. Get adequate sleep. 4 hours a night is not enough. 7-8 is ideal. However, the last time I think Mr. Twitchy and I ever slept that long was probably in college. We have forgotten how to sleep at night. I have tried sleepy time tea, meditation, yoga for sleep, no iPads, playing games on iPads in the middle of the night hoping to fall asleep, weighted blankets (which do help to some extent) various forms of CBD, etc. etc. It’s ok to take a sleeping pill for a few nights to break the pattern, or at least get a decent amount of sleep for a couple of nights so that you are not a zombie all of the time. Check with your doctor about sleep medications that may be right for you.
5. Get support from your family, friends and PD friends. Let them know how you are feeling and that you need some extra help for a little while. Don’t be a martyr.
6. Check your diet. Are you eating too much protein too close to taking your meds? Has the sugar monster has taken over your diet? If you are not sure what you should be eating, a Mediterranean diet is always a good place to start. Or check with a nutritionist. Dr. Laurie Mischley has done a lot of research on Parkinson’s and diet. Go to her website for more information
And if none of these things help, know that you are not alone. There are always Parkies on-line somewhere who are not sleeping either and are happy to chat in the middle of the night and commiserate with you.
I finally met Parky friends who I had met online, and it reinforced the fact that our common bond of Parkinson’s brings us together – and that we provide unconditional support for each other.
Twitchy Woman was featured today on Parkinson’s Life, a website for Parkies in Europe and beyond. Check out my WPC Diary here.