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!

Parkinson’s Awareness Month

April is Parkinson’s Awareness Month and there are lots of great articles on the internet.  Here are just a few.   If you want to tell your own story, please send it to me and I will be happy to share it.

7 Things I Wish I Knew When I was Diagnosed With Parkinson’s

by Gil Thelen, research advocate with the Parkinson’s Disease Foundation and a National Parkinson Foundation Moving Day® Walk for Parkinson’s participant

7 Things I Wish I Knew When I was Diagnosed With Parkinson’s

 

Lisa Cone writes:

Is sisterhood the secret for women with ?

http://bit.ly/1SsXIHG

Lisa attended the Women & PD Initiative conference sponsored by the Parkinson’s Disease Foundation with me.

From The Shoe Maven – a video about the #HeelsOnHeadUp campaign

There are many more articles, but too many to post.  When you can’t sleep, check out some of them on the internet.  And make your voice heard too.

 

 

 

Book Review: Livin’ La Levadopa

Your journey begins now in finding your rainbows behind the storm known as Parkinson’s Disease

Maria De Leon, MD

I met Maria de Leon last month at the Women & Parkinson’s Initiative Conference sponsored by Parkinson’s Diva was recently published and is a must read for every woman with Parkinson’s.

Maria de Leon, MD, was a neurologist treating Parkinson’s patients for more than 20 years when she started experiencing many of the same symptoms as her patients.  Because most of these were non-motor symptoms,  not the traditional PD tremor , she and her husband, also a doctor, thought she was just overworked.  But a consultation with a friend with whom she had gone through residency with confirmed that the problem was in her BRAIN, not her HEAD.  Maria was diagnosed with Young Onset PD, which changed her life forever.

Parkinson’s Diva is a result of much soul searching after her diagnosis and forced retirement from practicing medicine.  Her insightfulness, warmth and humor, along with a good dose of medical information, research and strategies for living with PD, make this book  a must read for all women with PD.  The  book is filled with anecdotes that will leave you laughing out loud, practical advice from treating Parkinson’s patients for so many years, and even some of her favorite recipes.  She is always seeking the rainbows behind the storm, gently nudging you to follow her on this journey to living well with Parkinson’s Disease.

As she states in the very first chapter, women with PD must be pro-active and educate themselves to ensure better quality health care for several reasons. Most importantly, Gender differences in symptoms, research and treatment have not seriously been looked at before.  Most research in the past has focused on men with PD, not women.  Dr. de Leon states that Estrogen may play a large role in how women present their symptoms and how they respond to medication.  Much more research needs to be done in this area to help identify PD earlier in women so that effective treatment can begin sooner.

Dr. de Leon describes herself as a Parkinson’s Diva, which she defines as a lady of distinction and good taste, with some chocolate thrown in for good measure.  She encourages you to “live la levadopa” to the fullest and do not sweat the small stuff.  As women, wives and mothers, our needs often come last, but we must remember to take care of ourselves first.  Put on your favorite red lipstick and show the world that you are still you and you have much more to contribute to the world, even with PD.  Take charge of your life and embrace your inner Diva.

Check out Maria de Leon’s website at http://parkinsonsdiva.org/

Women & Parkinson’s Initiative (Part 1)

Magic lies in telling stories

Robin Morgan, PDF Research Advocate and conference organizer

Roberta and Sharon fighting for their dinner


Greetings from New Jersey where I have been privileged to be part of the first Women and PD conference sponsored by the Parkinson’s Disease Foundation.  This first ever conference was organized by 4 amazing women from across the US who have all received previous training by the PDF to be Research Advocates.  All of them have PD and all are passionate about helping others fight the disease.

There are 25 participants who are all very accomplished in different ways.  One woman is a neurologist who had early onset PD.  Others include lawyers, physical therapists, teachers, researchers and even a pioneering feminist who has a weekly radio show.  Several have written books on PD, including “The Peripatetic Pursuit of Parkinson’s” which I highly recommend, Parkinson’s Creative Collective and “Parkinson’s Diva”  Parkinsons Diva  (I have not yet read this one).

The goal of the conference is to bring women together to learn in a small group setting about living with Parkinson’s Disease and issues that are unique to women with PD.   Each of us will then plan an event, retreat or other program to share what we have learned with other women with PD.  The better informed we are, the better equiped we are to deal with whatever PD brings us in the future.

Today I also met Roberta Marongiu, founder of Rock Steady Boxing NY/LA, the boxing program that I attend in LA.  Since she is located in NY, this was the first time we met.   Roberta is a researcher who focuses on the genetic causes of PD and the developement of new gene therapies for PD.

Sessions today included a very informative talk on Gender Differences in PD by Allison Willis, MD, a discussion on Sexuality and Women with Parkinson’s Disease with Sheila Silver PhD. and finally a lecture by Becky Farley, PT, PhD, who developed PWR! Parkinsons Wellness Recovery.  PWR! emphasizes doing exercies with amplitude, or large movements.  These movements can help with posture, balance and may even help repair the brain.   Today she led us in some basic movements.  Tomorrow we will spend an hour actually working out with her program.

I have also met several other bloggers here.  When talking about the proliferation of books and blogs about PD, one woman said that if you have PD,  you have to write a book.  Another one said she heard about a man who was working on finding at least 10,000 blogs on PD.  I guess the one thing we all have in common is that we want to tell our stories.
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