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.

“Listen to your body!”

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 twitchywoman18@gmail.com and I will send a PDF copy to you.

Parkinson’s Life, an online magazine based in London, published “World Parkinson Congress 2019: the travels of ‘Twitchy Woman” on June 20.

Photo from WPC with friends and Parky is featured in the blog post.

Farrel, Sharon, Elpidio, Naomi, Parky and Clara in front of Soaring with Hope for PD

The same photo of Twitchy Woman with friends at the WPC also showed up this week on Speakmedia’sImages 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.

!

My Non-support Support Group

 

Three years ago, I had the privilege to attend the Parkinson’s Foundation’s Women & PD Initiative.  At the end of the conference, we were asked to reach out to other women with PD in our communities.  Some of the women chose to hold a conference in their city for women with Parkinson’s.  Others formed support groups or other activities for women with PD.

From the beginning, the women who came said that they did not want this to become a monthly “gripe” session.

I decided to reach out to other women to get together on a regular basis for what eventually became what we lovingly call a “non-support support group”.   Instead of a traditional support group format, where there is an occasional speaker, but more often a facilitator led discussion, we have no format.  From the beginning, the women who came said that they did not want this to become a monthly “gripe” session.  They wanted to get to know other women with PD in a non-threatening environment.

We often have a speaker or activities to help us live better with Parkinson’s.  So we have had sessions where we boxed, we danced, did yoga, made art and drummed.  We have had a sex therapist speak to us.  A PD psychologist, a speech therapist and more.  Sometimes, we invite spouses or the men from my boxing group, depending on the topic of the day.   When American Ninja Warrior, Jimmy Choi, came to Los Angeles, we had him join us for an interview about his journey with PD, followed by an obstacle course and a potluck BBQ.

This past week, we had a holiday celebration, with both women and men, with a private docent led tour of  The Notorious RBG:  The Life and Times of Ruth Bader Ginsberg exhibit at the Skirball Cultural Center, followed by a tea.  When I tried to facilitate a short discussion at the tea, no one was interested.  After all, that is for support groups.  They were just happy to do something stimulating and informative and get together with friends.

The bottom line is that sometimes, we just like to get together and have fun or learn something new.  Many of us know each other through this group or from other activities in the PD community of LA.  So when we do meet, it is more often because of a special opportunity that has come to us that is different than what most support groups or PD conferences can offer.  And of course, there is always food.  We don’t meet as often as we did at first because, well, we are just busy women with full lives.

But something magical has happened.  Many of us have formed close friendships with others in the PD community.    Because LA is so spread out, women have come from places an hour or more away just to see the friends that they have made through this group.  Women who understand what they are feeling without even talking about it.  Women who were newly diagnosed and afraid to meet others with PD have joined us and discovered that there is a welcoming community for them that is there to help them on their own personal journey with Parkinson’s.  Most importantly, they have gained confidence from seeing that their diagnosis is an opportunity for them to do new things, not an end.  Many have discovered ways that they can live better with PD.   And others have created their own ways to reach out to others in the PD community.

Because of this group, I spent a lot of time at the World Parkinson Congress in Portland with two of the women who eventually created Soaring with Hope for PD.  We have all become very close friends.  Although I do not live close to them, we try to get together regularly for lunch or at other local PD events.  They reached out to me to help spread the word about Soaring with Hope from the beginning, and I am thrilled that this has become a global project that will be one of the highlights of the upcoming WPC in Kyoto.

So I want to thank all of you who have joined me on this fun ride for the past three years.  We will continue to get together to learn, to share and just have fun.  We may not meet as often, but when we do, I can guarantee that it will be time well spent.

Happy Holidays to all of you!

The World Parkinson Congress is just a little over a year away

At the WPC you can meet advocates from around the world.  Learn from them.  Be inspired by them.  Come away with life long friends.

Jean Burns

It is time to start thinking about going to the next World Parkinson Congress in June 2019.  As an official blogger for the WPC, I have been involved in meetings and planning for over a year now and have much to share with you.

First, if you have never attended the WPC, I can guarantee that you have never attended a meeting like this.  People with Parkinson’s (PwPs) can attend any session they are interested in,, from the most technical scientific presentations, to chair yoga, meditation, sessions on nutrition, sex and PD, the latest Marijuana research and more.  Everyone has an opportunity to contribute something to the WPC, there are song competitions, video competitions for pros and amateurs.  You can even submit an abstract or poster for consideration in the Poster Display as a PwP.

There are also opportunities to volunteer at the Congress.   You can spend a few hours volunteering on-site, or apply to become a Delegate Leader to work with the thumb_20170228_124918_21962.jpgWPC to coordinate a group of people interested in attending the Congress from your area.  There are travel funds available for those who need them, to go to Japan.  Sales of Parkie the Raccoon and other items benefit the travel grant program.  For more information on the WPC 2019 click here

I like to call Soaring with Hope for PD our “Ice Bucket Challenge” for PD awareness

So what can you do now to get involved?  Participate in a world-wide effort to bring together People with Parkinson’s, their care partners, health care professionals, etc., to create an art installation for the WPC titled Soaring With Hope for PD.  Three friends of mine from Southern California, Naomi, Clara and Amy, have created an amazing project, which I like to call our “ice-bucket challenge” for Parkinson’s Awareness.

To spread the word about Parkinson’s Awareness, the official WPC Bloggers are in a challenge to collect your messages of hope for the WPC.  We want to collect a total 10,000 messages, each of which will be printed onto a hand-folded origami crane. The 10,000 cranes with messages will be displayed as a magnificent art installation at the June 2019 WPC in Kyoto, Japan. All you need to do is click this link and enter your country and message.  If you have multiple messages, you can click and enter each message separately.   And make sure to select me as your BLOGGER.  The deadline for the challenge is July 31, 2018.

 Thank you for your messages of HOPE, raising awareness for PD globally, and for helping me with this wonderful challenge.

 

I will be sending out more information about the World Parkinson Congress as it becomes available.  I hope to see you next year in Kyoto!  Arigato!

 

WPC2019_SaveTheDate_1125x360px_Mars2017_2.jpg

 

Tripping into the new year

Did you just fall? No, I was checking if gravity still works.   Anonymous

Somehow, when things seem to be going well, something happens to bring you back to reality.  I fell twice this past week, after having gone months without a fall.  Once when I stepped on the edge of the sidewalk and my foot gave way, and the second time in someone’s home, when I was too busy talking to someone to see a one inch step in front of me.  Both times, I fell hard, with no chance of recovering my balance.  The second time, I actually injured my self.   I landed on one knee and the opposite hand, which was holding my cell phone ( I think).  The cell phone apparently dug into my hand, resulting in immediately swelling and pain.  Fortunately, x-rays showed no broken bones, so I am left with a sore hand and wounded pride, both of which should subside quickly.

But these incidents serve as a reminder that when living with Parkinson’s, we must always pay attention to our surroundings, more than usual.  You never know what dangers are lurking ahead to take you down.  A person without PD and good balance, will usually manage to stay upright when tripping on an uneven sidewalk.  They will start to fall, but catch themselves.  But with PD, it is a different story.  My wonderful husband, Mr. Twitchy, said that I fell like a tree off that sidewalk.  I never had a chance against gravity, as I would have before PD.

Image result for trippingWhat can a Parkie to do to minimize the chance of falling?  Walking poles can help, but only if you remember to use them. I really make an effort when walking up and down steps to use the handrail, and that has helped a lot.  Uneven steps have been a challenge for a long time.  Unfortunately there isn’t always a handrail when you are out on a sidewalk.  You need to look down at the sidewalk and look ahead at the same time so you don’t walk into anything in your way.  Sounds easy, right?  Not always, especially on a crowded sidewalk.

And then there is the cellphone, which is a major distraction and probably dangerous to use while walking (as much as when driving), but we all do it anyway.   Mr. Twitchy keeps telling me to put it away while walking.  He is concerned that I am really going to hurt myself one of these days.  He is probably right, but don’t tell him I said that.

Image result for quotes about tripping and fallingFinally, I can’t help wondering if the recent falls are signs of changes in my Parkinson’s symptoms.  And that scares me more than anything else.   Mr. Twitchy keeps reassuring me that I am ok, that I just need to pay attention to my surroundings more.   And I really hope he is right about that.

 

On a totally different subject, please check out Soaring with Hope for PD – Parkinson’s on Facebook.  This is a project created by 3 friends of mine who are all living with PD.  Their goal is to reach out to the Parkinson’s Community worldwide and bring at least 10,000 origami paper Cranes, each bearing a message of hope, to the WPC in Kyoto, 2019, to be displayed in a beautiful art installation.