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!

These Women are Real Life Parkinson’s Heroes in Their Community

When I asked you to send me the stories of real life PD heroes in your community, I received an email from Candace Mueller of Springfield, Illinois about her friend Eve Fischberg. Which was followed by an email from Eve praising Candace’s work in the Springfield Parkinson’s community. From their emails, I got the impression that they are really a power team in Springfield. Here are their stories as told by each other.

Eve Fischberg

From Candace Mueller

Eve and Candace

Eve is the founder and director of Joy of Movement: a unique nonprofit group providing adaptive dance classes at no charge to persons living with Parkinson’s Disease and other chronic neurological disorders along with their significant others or care partners.  My friend Susan White is my dancing partner and we’ve been under Eve’s direction for nearly a year.  We have truly experienced JOY of movement– even when not so graceful.

The Joy of Movement began in 2016 and now offers classes on Tuesdays, Wednesdays and Thursdays at First Presbyterian Church, in downtown Springfield.   Eve started this program in her, quote “retirement” from an impressive profession as an occupational therapist serving people in the greater Springfield community for over four decades. Eve loves music and dance.  She has used dance in her therapy work with children with special needs, people with dementia, and many others throughout her career. She also developed and currently leads a falls risk reduction program called Stepping Up for persons with dementia and their care partners under the auspice of SIU’s Center for Alzheimer’s Disease. 

Dozens of people living with Parkinson’s in the greater Springfield area have greatly benefited from Eve’s professional expertise and her training in Parkinson’s dance instruction by the Mark Morris Dance Group in New York City.  Eve has a special place in her heart for people with Parkinson’s which is evident by her enthusiasm in leading the Joy of Movement classes.

On Wednesday mornings I am blessed to experience an hour of exercise, scientifically proven to benefit me as I develop flexibility and gain confidence in movement, connecting my mind to my body.  As a social activity I also have fun. And I have met wonderful new friends dancing together.

Eve’s name describes her perfectly for me.  The traditional meaning of Eve is “living”—to live or give life–from the Hebrew.  When I watch Eve share with us her joy, it expands my world from a person living with Parkinson’s to a person living with joy. Springfield is fortunate to include Eve Fischberg.

Candace Mueller

From Eve Fischberg

Candace is a Parkinson’s hero herself, having mustered her amazing networking and organizational skills to create the Friends with Parkinson’s group, as well as to forge a relationship with the  Parkinson’s Foundation. (This event has been changed because of the Coronavirus) This will result in the first Care Partner Summit being offered in Springfield–an event which already has attracted a large number of registrants. Thank you,  Candace for your vision and for your generous support, as always.

 Candace was diagnosed with Parkinson’s 9 years ago. In addition to her carbidopa/levadopa medication, exercise has been her second medicine. The Joy of Movement dance class, yoga and chair yoga specifically for Parkinson’s,  Rock Steady Boxing, water aerobics and walking her 1 and half year old yellow lab Layla are a regular part of her exercise regimin.

Her third medicine is a wonderful support group of Friends Living with Parkinson’s who meet monthly in Springfield.  She says that “Eve was/is the key person to encourage me all along the way to establish the Friends group.” 

Springfield is lucky to have these two women who are doing so much for the people with Parkinson’s in their city. They are truly heroes to all who they have helped and inspired.

Superwomen by Jose Luis Garcia-Lopez : comicbooks
by Jose Luis Garcia-Lopez, DC Comics

Sundays with Twitchy Women

This coming Sunday brought to you in your own home through the magic of Zoom! Register today to reserve your space.

How I Learned to be a Fighter

Sunday, April 19 at 10 am PDT, Jennifer Parkinson Iljin, another PD Hero, will discuss her 15 year journey with Young Onset PD as a single mom, creating StrongHer Women & Neuroboxing, embarking on a 115 mile hike across Sicily for the upcoming documentary “Pilgrimage to Enlightenment” and a short Neuroboxing workout.  No boxing gloves required.

Registration required at  https://zoom.us/meeting/register/vJMrf-yrqDoo0Z8VOcPMBgXY4tpeqmFd6w

Jennifer Parkinson Gives Parkinson’s Patients a Fighting Chance through Boxing

Our last name is Parkinson’s, isn’t that why you have it?

Jen’s 5 year old son

This was originally published as “Yes, Wonder Woman really exists and she looks like Jen Parkinson”

Wonder Woman really exists and she looks like Jen Parkinson.

Jennifer Parkinson, yes, that is her real name, is a role model for everyone with Young Onset Parkinson’s Disease (YOPD) and for those of us who are older with PD.  Her story is inspiring,  She is tall, young, beautiful and athletic – Gal Gadot watch out!  And she is the perfect example of how to manage your life while living with Parkinson’s Disease.

We had a chance to meet on Friday morning before the Davis Phinney Foundation‘s Victory Summit in Pasadena, California, where she was scheduled to speak later that day about Women and Parkinson’s Disease.  We initially met almost 3 years ago at a conference sponsored by The Women & PD

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Sharon vs Jen

Initiative, which is a program of the Parkinson’s Disease Foundation (now the Parkinson’s Foundation).  Since I was taking boxing classes and Jen teaches boxing, we were asked to give a boxing demo to the other women who attended.  I am the short one in the photo!

On Friday, Jen looked great, no visible tremors or other signs of PD.   Listening to her story, it is hard to believe that this person sitting in front of me went through so much hardship with PD.  Diagnosed 13 years ago at 29, with symptoms that started soon after her son was born, life was not so good.  Jen had a difficult pregnancy, and 6 weeks after her son was born, she noticed a tremor in her right hand.   Even though she was trained as an RN, she never thought that it was PD.  When she went back to work, the shaking made it difficult to work with patients, her writing became illegible, her foot started to shake, making driving difficult, and then her blood pressure started dropping and her heart rate at times went from 30-180.  It was not long before she had to stop working.

“Here’s a prescription, I will see you in 6 months.  Oh, by the way, in 10 years you will be wheelchair bound and unable to take care of yourself or your kids.”

After 2 years of seeing numerous doctors in search of a diagnosis, a visit to an endocrinologist finally put her on the right path.  He sent her to a neurologist that she   worked with at the hospital, who finally diagnosed her with PD.  He put her on Amantadine to see if it would help and said to her:  “Here’s a prescription, I will see you in 6 months.  Oh, by the way, in 10 years you will be wheelchair bound and unable to take care of yourself or your kids.”  Not what she wanted to hear at age 32, with a 2 year old and 5 year old.  He gave her no information, no support groups, nothing about diet or exercise.

She stopped working, went on disability and then got divorced.  She was facing life as a single mother and her symptoms were getting worse, with freezing episodes 2-3 times a day.  She started using a rescue drug that was an injection, but could not administer it to herself since she was home alone.  She often had to wait out the freezing episodes.

That is when she heard about Rock Steady Boxing.  At the time it was only offered in Indiana, so she called a local boxing gym and started training there.  She was training in a regular class with the guys who were getting in the ring.  It was incredibly intense, especially since Jen was the type of person who signed up for the gym but never went until it was time to cancel the membership.  She felt immediate results from the boxing.  She felt good on the days she went to class, and terrible on the other days.

Jen eventually helped set up Rock Steady Boxing with a friend in Costa Mesa, a 2 hour drive from her house.  Soon after, a boxing gym opened up near her.  She went to a class which was taught by her now business partner, Josh.  They eventually opened up a Rock Steady Boxing, and went from 14 to 90 people in a short time.  But they soon realized that they needed more than just boxing classes.  It had become clear that a support resource for people with Parkinson’s and their families was needed, with other services besides boxing classes.  And they wanted to open it up to people with other neurologic diseases.  2 years ago, on September 12, 2016, Jen and Josh opened Neuroboxing.  Today they now have 5 locations and also train other trainers to teach neuroboxing.  All of this happened in 2 years.

I asked Jen how she feels.  There are times that are not great, but most of the time she is feeling good.  Her children don’t remember a time that she did not have Parkinson’s.  They remember when she could not get out of bed and when they used to have to help her.  When her son was 5, he once asked if he was going to have Parkinson’s too.  He said:  “our last name is Parkinson’s, isn’t that why you have it?”

When asked if she knew what caused her PD, Jen said that she was in a car accident several months before her symptoms started.  She started having some cognitive issues soon after.  Jen later discovered that 4 other nurses she had worked with at the same facility all have PD.   The nurses are wondering if there was something in the facility that  affected all of them.

Although I had to leave before Jen’s presentation later that afternoon, I heard that she was terrific, inspiring and a true role model.  Our Wonder Woman, Jen Parkinson continues to amaze.

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DC Comics Wonder Woman

 

Thank you to Medtronic, one of the sponsors of the Victory Summit, who arranged for me to meet with Jen at the Summit.  While Jennifer does not have DBS, it has been very beneficial to many other patients with Parkinson’s and Medtronic has a line of DBS systems.