The Right Attitude

I think all of us are heroes

Barry Blaustein

Victoria Miller

In his book, The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined, Tim Hague, Sr. shows how we can all learn to persevere in the face of daily struggles – or even life-changing illness. Victoria Miller, one of this week’s Parkinson’s Heroes has that exact “Never give up, never give in” attitude. Her husband, Bob Miller, tells her amazing story. 

Victoria with her grandson David
courtesy of Bob Miller

Victoria has been on the Board of Directors of the Iowa Chapter of the APDA since 2013 and convinced Bob to be a part of it as well (he is now the President). Her primary function is to help Support Groups throughout the state (currently 53 groups). She has initiated leader gatherings, presented ideas on how to run better meetings, suggested speakers and even secured $300 worth of books and materials that were distributed to every support group. Victoria’s passion is to make sure every person with PD in the state — not just those in the larger metro areas — is represented. What is even more amazing is that she accomplished all of this while undergoing DBS surgery TWICE (infections complicated the first) over an 8-month period and breaking her ankle in two places after the second, without missing a single meeting (and even saw the musical Hamilton in Des Moines). She still has stiffness in her lower leg but she keeps moving, and participating in the local Delay the Disease classes and the local support group.

As Bob says, with some understatement, “What can I say, she’s a fighter.” And a hero.

Barry Blaustein

Barry with his daughter Kasey

Several months ago, I profiled Barry Blaustein, who is in my StoPD boxing class. In a conversation with Alex Montaldo, founder of StoPD, he named Barry as a Parkinson’s Hero because of his involvement with the greater Parkinson’s community. Barry, who has had a long career as a film writer and director, now teaches screen writing at a local university. His background has prepared him well to be an official spokesperson for the Parkinson’s Foundation. He now travels to speak at PD conferences around the country. His inspirational speeches help many with PD learn about the good things about having Parkinson’s. “It’s still awful having it, but if God gives you lemons, you got to make lemonade!”

Barry has spoken on behalf of the Parkinson’s Foundation to members of Congress to get sponsors for legislation that would cover mental health under Medicare. He is very proud of the fact that 2 of the 7 legislators that signed on as sponsors of the bill were people he personally spoke to. Now he is currently writing a one man show about having Parkinson’s. I can’t wait for the premier!

On Parkinsonsdisease.net this week

Keeping Your Sanity Under Quarantine

By Sharon Krischer · April 20, 2020

It is now Week 5 under quarantine for most of us.  Because we were exposed to COVID-19 two weeks earlier on a trip, Mr. Twitchy and I have actually been home for almost 7 weeks now.  And we are definitely getting cabin fever here.

One of the biggest problems we have had is keeping track of time.  When there is nothing to reference what day of the week it is or what time it is, everything becomes a blur.  To read the rest of the article, go to https://parkinsonsdisease.net/living/staying-productive-covid-19/

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.

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).

 

Parkinson’s Target Practice and other Things

Sometimes it seems like Parkinson’s Research is a bit like Target Practice.  If you try to come at it from a lot of different angles, eventually something is going to hit the bullseye.  It is almost impossible to keep up with all of the different research projects looking for a cure or even just a way to slow down and stop the progression of PD.

Some examples from this past week alone include fish that sense magnetic fields, effect of different frequencies of DBS on gait, and chaperone proteins. Huh?  Someone please interpret!!!!

  1.  This study from  Michigan State University (MSU) : A fish that can sense the Earth’s magnetic field while it swims could help scientists understand how the human brain works and eventually unlock strategies to help control movement impairments in patients with Parkinson’s disease and other neurological disorders, a study reports.
  2. Low-frequency subthalamic deep brain stimulation (STN-DBS), but not high-frequency STN-DBS, reduces freezing of gait in Parkinson’s patients while preserving their ability to simultaneously process motor and cognitive information, a recent study shows.   The study, “Decreasing subthalamic deep brain stimulation frequency reverses cognitive interference during gait initiation in Parkinson’s disease,” was published in the journal Clinical Neurosphysiology.
  3. Low levels of a specific chaperone  protein might be implicated in the development of Parkinson’s disease and Lewy body dementia, according to new research at   University of Alabama at Birmingham.   Researchers investigated the role of a protein  called 14-3-3θ — a type of protein that can assist other proteins to assume a proper shape. “The study suggests that 14-3-3θ may be a suitable target for efforts to slow the progression of neurodegenerative diseases, although more work is needed,”  according to  Talene Yacoubian, an MD and PhD, associate professor in the Department of Neurology at UAB.

Other interesting stuff:

  1. I just finished listening to
    Perseverance: The Seven Skills You Need to Survive, Thrive, and Accomplish More Than You Ever Imagined
    by fellow WPC blogger Tim Hague.  He tells his fascinating story of growing up as a bi-racial child in a large, warm adoptive family, his Parkinson’s disease, how he and his son, Tim, Jr. got into The Amazing Race Canada (Season 1) and finished in first place, and more.  I really enjoyed the book and finally met Tim last week at the Davis Phinney Victory Summit in LA.  Well done, Tim!
  2. And in the “what was I thinking department“, Mr. Twitchy and I went to the Fox Foundation’s Parkour 4 Parkinson’s event in LA a few weeks ago.  I am not sure what got into me, but I had to try the course.  According to PD Ninja, Jimmy Choi, there were only 4-5 of us Parkies there who actually tried it.  Mostly it was agile kids and teenagers having a great time. (watch for the young girl behind me on the ropes).  I should have known better, but once I was there, any brain cells that I still have left apparently forgot that I am not in Middle School.  Here is the video that Mr. Twitchy took of my attempt at being a Ninja Warrior!