Eight little things you can do to improve your life with Parkinson’s

Living with Covid-19 quarantines has challenged our daily routines, and with that, our individual and collective health. And sanity. One of the goals of beginning Sunday Mornings with Twitchy Women three months ago was to help us find ways, frequently little ways, to better meet the challenges of living with Parkinson’s disease. Thanks to our presenters we have been able to do just that. Each of them has shown us that we are resiliant and can adapt to the challenges that confront us. Almost all of these tips can be useful for everyone.

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  • Find new ways to exercise. We all know the importance of daily exercise to fight the disease, and we got to experience several different types of exercise. Many of our favorite exercise classes, such as Jen Parkinson Iljin’s Neuroboxing and Lisa and SteF’s PD-Connect are now available online, either through live Zoom classes or Youtube videos. Not being able to go to the gym is not an excuse to sit around and do nothing. Two useful tips: you don’t have hand weights? Use filled water bottles instead. No yoga strap? Use the sash from your bathrobe.
  • Worried about going back to the gym when it reopens? The Youtube exercise/meditation/mindfullnes videos you have been watching will still be there, as will the recorded exercise classes on many different websites. There is a lot to choose from and this option will not go away soon.
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  • Maximize your Levadopa. Lemon juice helps your body absorb Levadopa better. According to Dr. Laurie K. Mischley, studies have shown that people with PD do not make as much stomach acid as needed for proper digestion and absorption of nutrition from food and meds. Adding either 500 ml powdered Vitamin C or 30 ml Lemon Juice will help make more Levodopa bio-available, making it 25-35% more absorption and a smoother delivery of the Levodopa.
Should You Stop Taking Fish Oil?
  • Work on your Omega 3s. Can’t take Fish Oil? Look at Algae oil — not Flax oil — as a substitute. Better yet, get your blood levels of Omega 3 Fatty Acids checked. If normal, you won’t need to take either. As Dr. Mischley pointed out, many people who are vegetarians have normal levels without taking Fish Oil.
  • New ways to mindfulness. Have you tried mindfullness and meditation with no luck? According to Kat Hill, who brought us Sketchbook Journaling, sketching what you see is a mindfullness practice, which reduces the stress response. Gratitude Journaling can also form new neural pathways. And Life Coach Kristie Scott told us about Evolution Cards. These give you a “focusing word” with an insightful lesson and a challenge to inspire positive action followed by words of encouragement. The point is to use your chosen word to start a new evolutionary journey every day.
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  • Taiko Drumming! This is a great way for a person with PD to exercise. It includes large amplitude movements, full extensions, trunk rotation, variation of volume and tempo, sequencing, memory and cognition and vocalizations. Special thanks to Sydney Shiroyama and Naomi Estolas for this fun presentation.
  • Know where to go for PD resources. Kristie Scott also gave us a comprehensive list of resources for people with Parkinson’s.
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  • Be silly; have fun. According to (self-described) “Parkinson’s Diva,” Dr. Maria de Leon, do just about anything that will put a smile on your face; a Tiara and Red High Heel shoes will make you feel a lot better, even if you can’t walk in those shoes!

Sunday Mornings with Twitchy Women are webinars on Zoom for Women with Parkinson’s Disease, held every other Sunday morning at 10 am Pacific Time. To maintain privacy for this group, we ask that care-partners and family members not attend unless an event states that registration is open to all. If you have any questions, please contact twitchywoman18@gmail.com.

Next up: Sunday, June 28 Living well with PD in Covid-19 era 

Movement Disorders Specialist Indu Subramanian, MD, UCLA and the VA, (my wonderful doctor and PMD Alliance superstar!) will talk about living well with PD in the Covid-19 era including the importance of social connections, mindfulness and yoga to alleviate some of the stress we are all feeling during this unsettling time. Watch her recent talk on PMD Alliance with Dr. Ray Chaudhuri about pain and PD. Register here for this program.

To see what else is scheduled, click on Sunday Mornings with Twitchy Women at the top of this page.

Have a great week!

Stay Safe, Stay Well and please Stay Sane!

A Different Kind of Parkinson’s Hero

I think a hero is an ordinary individual who finds strength to persevere and endure in spite of overwhelming obstacles.

Christopher Reeve

In the last few years, several amazing Parkinson’s heroes have become the face of the Parkinson’s community world-wide. Super heroes like American Ninja Warrior Jimmy Choi, Matt Eagles, diagnosed at 8 years old, who has created Parky Life and has filled some of the void in the UK left by the passing of Tom Isaacs. Linda K Olsen, a triple amputee with Parkinson’s, lives an unimaginably full life in spite of her disabilities. Carol Clupny, has hiked on The Camino in France and Spain, covering a 1000 miles in 4 different treks and cycled on a tandem bike with hubby Charlie in the annual RAGBRAI bicycle race across Iowa 3 times. Tim Hague won the Amazing Race Canada with his son, overcoming many PD induced obstacles to win.

We can’t all aspire to what they have accomplished. They are definitely the outliers. However, there are many people in our community who we can look up to and are our everyday Parkinson’s Heroes. Here are a few that I know personally. I hope to follow up with several more in the coming weeks.

Dancing Through Parkinson’s

Linda Berghoff was a dancer who began to have difficulty doing turns and other dance moves. Once she was diagnosed with Parkinson’s Disease, she started looking for solutions. Because her children live in NY and she is in LA, she searched in both cities for ways to improve her life. She heard about David Leventhal and his groundbreaking work creating a dance program for People with Parkinson’s and immediately contacted him. She trained with him so that she could teach the program once she was back in LA. Her closest friend’s daughter had started a dance company in LA, so Linda proposed that they take on this program. Today, with Linda’s guidance, Invertigo Dance Theater offers 6 classes weekly in different locations in Los Angeles, reaching hundreds of people .

Soaring With Hope for PD

Naomi Estolas, Clara Kluge* and Amy Carlson* are the forces behind SOARING WITH HOPE FOR PD, which really was the centerpiece of the WPC in Kyoto. Their stories are intertwined beginning with the WPC in Portland (more about that later).

Naomi was diagnosed April 2015, however her symptoms go back to 2010, when she started experiencing slowness and movement that was not as fluid as it should have been. She learned that she had Parkinson’s during her work lunch hour. She and her husband were in shock and didn’t know much about Parkinson’s. Naomi decided immediately to start her personal fight against PD. Within the first month of being diagnosed, she attended 2 PD conferences and found the support group that she still goes to.

The three women were introduced to each other by Trish Lowe*, a woman with Parkinson’s who is a support group facilitator. They met at Lineage, a facility run by Amy for PwP’s, at a screening of the documentary film SAVING GRACE with David Levanthal.  The three of them went to Portland together for the World Parkinson Congress in September 2016. I was fortunate to be able to spend a lot of time with them in Portland and saw how quickly they mobilized others when they decided to do something. Naomi approached Anders Leines, a photographer with PD whose work was on display, to take a photo of a group of people with PD in front of one of his photo-murals. She and Clara spent the next two days recruiting people to participate at the designated time. The photo below was featured as a highlight of the WPC by Parkinson’s Life, a UK-European website.

WPC highlights lead
Photo by Anders Leines
Naomi and Clara, bottom left, Twitchy Woman, center

Soon after the WPC ended, Naomi thought about doing a project for the next WPC in Kyoto. SOARING WITH HOPE FOR PD came into being with the goal of making 10,000 origami cranes representing HOPE. Naomi, whose mother is Japanese, had 1000 origami cranes representing Hope on display at her wedding. So 10,000 should be attainable for the WPC, right? Naomi recruited Clara and Amy to help get the project going. Naomi worked nearly fully time on this project for the next 2+ years, again quickly reaching out to others, including school groups, to make many of the cranes, educating them about PD. They also reached out to PwP’s living in many other countries to send cranes with messages of hope written on them. The end result was many more than 18,000 cranes hanging from umbrellas, with messages from around the world in many different languages. The display at the WPC was magical, to say the least.

In a separate, but related project, Clara, who loves to dance, sent out a request for videos of original crane dances by PwP’s. She received so many that she has over 50 hours of videos. Many were shown at the Soaring with Hope for PD display at the WPC. She is currently working on a documentary about the project.

Naomi’s Parkinson’s journey consists of ups and downs day-by-day and even hour-by-hour, even with the challenges she always tries to do the best she can and LIVES LIFE in the present. Her hope is for each of you to do the same. 

Who are your Parkinson’s Heroes?

Do you know someone who should be recognized as a Parkinson’s Hero? Please email me at twitchywoman18@gmail.com with their name and why you think that person is a hero. I would love to share what they are doing with all of you.

*Clara Kluge, Amy Carlson and Trish Lowe will be featured in a future blog post. They are all remarkable women who are Parkinson’s Heroes.