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!

PD Heroes For Parkinson’s Awareness Month

A hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles.

Christopher Reeve

This month, April, 2020, I will be sharing the stories of some People with Parkinson’s (PwP’s) who are heroes for many of us. In February I wrote about A Different Kind of Parkinson’s Hero, highlighting several women with PD who have Parkinson’s who are making a difference for others in their communitites.

Since then, I have received the stories of other “PD Heroes” who will be featured this month for Parkinson’s Awareness Month. As I said in February, I think there are two types of PD Heroes. The Parkinson’s Super Heroes who have gone above and beyond anyone’s expectations to accomplish things that would be extraordinary for someone without PD and the Real Life Parkinson’s Heroes who make an impact on others in their local communities in quite wonderful ways. We need both types of heroes in our lives to combat the old image of PD – the drawing of the hunched over old man, shuffling his feet and shaking. I won’t even reproduce that drawing here because we really want to forget that it exists. You will meet people here in the coming weeks who project a totally different image people with Parkinson’s. They are terrific people living terrific lives.

What I find interesting is that for all of our heroes is that their journey started much like everyone else. Many were misdiagnosed at first, often spending the first few months or even years after hearing those 3 dreaded words “You have Parkinson’s” in a state of shock. Some, like Jimmy Choi, it took several years and a wake up call in their lives, (he fell down the stairs carrying his son), to actually get out and start doing something to improve their own quality of life. Eventually, their passion for doing something that they enjoyed, led them down the path to doing something amazing. Today’s hero, Jon Pawelkop, who I would put in the Super Hero category, took his love of exercise and Rock Steady Boxing and turned it into an incredible journey that took him to every state in the US. This is his story, as shared by his wife, Pat Pawelkop.

Jon Pawelkop – Parkinson’s Super Hero

Jon Pawelkop, from Tampa, Florida, was misdiagnosed with essential tremor in 2014, and correctly diagnosed with Parkinson’s Disease in February of 2016.  The first year was one of coming to terms with what it could mean for him, a difficult time as he was always very active, athletic, and loved to live life to the fullest. He was very afraid of losing all that. 

Exercise and Rock Steady Boxing were the beginning of finding his way back. Jon pushes himself every day, to work hard, be active, and be a role model for others.

Jon’s Journey

In May 2018, Jon decided to promote Rock Steady Boxing and share its benefits with others by creating a personal challenge. Jon’s Boxing Grand Tour Fighting Parkinson’s was started. His goal was to visit a RSB affiliate class in every state, work out with the fighters there, and share a word of encouragement wherever possible. In the 13 months that followed, Jon completed his goal and visited more than 60 RSB affiliates, traveling to every state, and working out with the Fighters at a RSB class.  He did most of this while flying standby, not always an easy task! 

Stop #50 Hawaii
Jon is on the left wearing the orange lei

The last state was Hawaii, where Jon visited a class in Hilo, on the Big Island of Hawaii. He combined this trip with the World Parkinson’s Congress in Kyoto, Japan, which he and Pat attended together. He had the great privilege to help represent RSB while at the WPC in Japan, where he helped RSB coaches from Japan, Norway, Italy and the USA as they demonstrated their lessons for the WPC attendees. It was a great opportunity and a highlight of their journey.

Along the way, Jon also visited a RSB class in Ede, Netherlands, in conjunction with a previously planned vacation to Germany. He plans to continue to visit classes as wherever his travels take him. 

Make It Mean Something, MIMS

Jon was recently appointed as an Ambassador for the World Parkinson’s Congress 2022 in Barcelona Spain. He is excited to see where this new stage of his advocacy journey will take him. He loves meeting people who share his fight, and encouraging others to Make It Mean Something, MIMS, which he has certainly done.

For more of Jon’s story, and background you can reach Jon at jonpawelkop@gmail.com or Pat at patpawelkop@gmail.com Jon also has a short Ambassador bio on the World Parkinson’s Congress 2022 website.    
Facebook –   Jon Pawelkop (personal page), Jon’s Boxing Grand Tour Fighting Parkinson’s (group page)

Real heroes are all around us and uncelebrated.

Peter Capaldi

Who are your Parkinson’s Heroes?

Do you know someone who is a Parkinson’s Hero? I would love to share their stories here. Send stories and contact information to me at twitchywoman18@gmail.com.

Sundays with Twitchy Women

Don’t forget to sign up for our next Zoom meeting taking place on Sunday, April 5 at 10 am Pacific time.

Our guest will be the hilarious Dr. Maria de Leon, author of The Parkinson’s Diva. Wear your Diva bling and break out the Prosecco for our Diva Party. We will talk about maintaining our “Diva-ness during this time of social isolation, oops, I mean social distancing.

You will need to register from now on when we use Zoom for these meetings.  Click here to register for the Diva Party. 

Some good reads for Parkies

 I won’t sit back and allow Parkinson’s to destroy my world. I’ll learn the language, understand the context of my new reality, and then encourage others to thrive with me in this battle.   Tim Hague

Over the years, I have read a number of books about Parkinson’s Disease. Some written by the “experts”, some by people with Parkinson’s telling their stories and even a few written by people trying to sell a “cure” to unsuspecting people who are desperately looking for an easy way to “get well.”

There are many books written by People with Parkinson’s, many of whom also write PD blogs.  Some are good, some are dreadful. There is a saying about PD bloggers, that if you write a blog, you will write a book. I don’t necessarily agree with this because in today’s world of sound bites and short attention spans, many of us write about whatever interests us at the time we are writing a blog post. There is no narrative, just a collection of short essays (do they even qualify as essays anymore?) that don’t always fit together.

For those of you who were diagnosed a while ago, there may be nothing new here, but I would love to hear any suggestions for books that I have missed. For those of you who are newly diagnosed, I hope that this will be give you a good place to start learning about how you can live well with PD.

I have listened to a number of these books on Audible, especially when they have been narrated by the author. Hearing it in their own voice often lends subtleties to the narrative that you don’t get just by reading the book. I also like to listen while I am out walking. Sometimes you have to keep going just to finish listening to a good chapter, so it can help you get closer to your exercise goal at the same time!

By the way, these make great gifts for People with Parkinson’s and/or their Care Partners.

New in 2018

Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined by Tim Hague –  Hague was diagnosed with  YOPD at age 46 and wonPerseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined Canada’s Amazing Race race with his son, Tim Jr., 3 years later.  The highlight of the book is his blow by blow account of the Race, which he (and his opponents) never expected to win.  Hague is truly inspirational in talking about how he lives his life to the fullest with PD. Listen to it if you can.  Whether or not you have Parkinson’s,  you will be inspired to live your best.

Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis!

Parkinson’s? You’re kidding me, right?: One woman’s unshakeable belief in overcoming a shaky diagnosis!  by Sheryl Jedlinski.  Jedlinski was one of the firstbloggers that I followed.  Always informative, humorous and a good read.  A great book for the newly diagnosed.

The Best from Previous Years:

Brain Storms: The Race to Unlock the Mysteries of Parkinson’s Disease by Jon Palfreman.

Brain Storms: The Race to Unlock the Mysteries of Parkinson's DiseaseStill my all time favorite.  After his own diagnosis with PD, Palfreman, an awardscience journalist, wrote this insightful book about the doctors, researchers, and patients  who continue to hunt for a cure for Parkinson’s Disease.  A must read for anyone with PD and their families.

Always Looking Up: The Adventures of an Incurable Optimist         Always Looking Up: The Adventures of an Incurable Optimist by [Fox, Michael J.]        by Michael J Fox.  I recommend listening to this book if you can.  Fox is always inspirational and you can almost see the twinkle in his eye as he narrates the book.

 

Parkinson’s Diva by Dr. Maria de Leon.  Fun, informative book for womenParkinson's Diva with PD by Dr. Maria who was a Movement Disorders Specialist before she was diagnosed with YOPD.  We met three years ago at the Women & PD Initiative conference sponsored by the Parkinson’s Foundation and have become good friends.  Maria tells it like it is, with lots of humor along the way.  I challenge you to not laugh when you read about her experience after a massage.

Parkinson’s Treatment: 10 Secrets to a Happier Life: English Edition and  10 Breakthrough Therapies for Parkinson’s Disease: English Edition by Dr. Michael S. Okun.  Two very good informative books written by the National Medical Director of the Parkinson’s Foundation.

I am looking forward to meeting more Parkinson’s authors at the World Parkinson’s Congress in June.  I hope to find some new favorites to add to my list.  The 7 books listed here should keep you busy reading until then. There are more listed under the heading  My Books and Things I Like   If you have a favorite that is not on my list, please let me know (preferably in the Comments so that others can see it).

 

A Need to Help Others:  One Woman’s Story

Sunday I had the pleasure of meeting with a group of women with Parkinson’s in Glendale, a suburb of Los Angeles.  Tricia Low had pulled together the group to discuss issues related to Women with PD.  Tricia is amazing.  Her father had Young Onset Parkinson’s so she knew when she started having symptoms at a young age, that she, too, had PD.

The first thing Trish noticed was that her handwriting started to look like her father’s.  She was a labor and delivery nurse and about a year before she was diagnosed she realized that couldn’t read her own handwriting in patients charts.  Her father was diagnosed in the 70’s and the one thing she remembers from that time is that it affected men more than women.  So she never thought that she would get PD.  Looking back, she thinks her symptoms probably started a year earlier, but she ignored them.

First she went to a local neurologist.  He ordered bloodwork and her results were “wacky”. They realized that she probably had Leukemia in addition to Parkinson’s.  The first doctor was not very positive.  He talked to her husband, not to her, in spite of the fact that she was a nurse.  He did not give her any information, so she began to look elsewhere.

She first went to Huntington Hospital, which was filled with “old people with white hair”.  There was no one there her age. She went to hear a doctor there who was speaking about Parkinson’s  and she went up to him and explained that the first doctor put her on Requip and she was havinga bad reaction to it.  The first doctor said she would get used to it.  The second doctor disagreed, so she changed doctors.  He took her off the Requip and made some other changes.

In 2007 she retired from nursing after 25 years. She then became a coordinator for the Parkinson’s Association in the Valley.  The doctor who was working with her found it difficult to maintain a personal relationship with her and be her doctor.  So again she looked for another doctor.   She eventually got an appointment to see Dr. Jeff Bronstein at UCLA and has been happy ever since.

It took about 5 long years to finally get to the right doctor, which has made a huge difference.  

Trish says there are  4 things we must do to cope with PD:

  1. Keep a positive attitude
  2. Exercise every day
  3. Advocate for yourself
  4. Always check for the latest information on the internet

She is always trying new things.  She goes dancing, she boxes to get out the aggression.  She has been inspired by Dr. Maria de Leon’s book to become a Parkinson’s Diva. She prays.  She is a religious person and prayer is very important for her.  Also, her grandfather told her that if you get dressed every day, put your make up on and look your best you will feel better.  Its a great way to keep going.  “I always tell people that I am a pretty package, but a mess inside.”

What makes her story so unique?  She did not expect to be fighting two different diseases at the same time.  She has had 4 DBS implants because she broke the first set!  She fell off a step-ladder and snapped the wires in half.  She set a precident for patients after her because the doctors changed where they anchored the wires so that it won’t happen to other people.

Her advice to the newly diagnosed:  each time you lose something that you can’t reverse, take the time to grieve about it to get the negative out of you.  Exercise every day 30 minutes.  If you believe in God, or some other higher power, get close to them.

Finally, Trish says “what  keeps me fighting is I still have a  purpose to my life. One of my passions is  ‘Caring for people and helping  them along the way.’  So I went from Nursing Moms’& Babies to Parents & Preemies to helping adults with PD.  I want to help them. But having a PURPOSE is high on my list of surviving both my diseases. This truly the end of my
story.” 

   DJ Crawford (Trish’s Mom), Maryanne Moses, Trish Low, Zahra Ehssani, Sharon Krischer and Deanna Ahmed