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.
Don’t forget to follow my Facebook Page for the latest news on PD research.

A possible breakthrough in PD treatment, Boxing and more

A few posts from the Parkinson’s Action Network.

Did you know that there is a Congressional Caucus on Parkinson’s?  The Congressional Caucus on Parkinson’s Disease was created to educate Members of Congress about Parkinson’s disease issues and to inform them and their staff about the latest developments in Parkinson’s research and care.  Led by its Co-Chairs, more than 150 members of the Congressional Caucus on Parkinson’s Disease work together to support the needs of our community in the hopes of finding better treatments and a cure for Parkinson’s.  They are our champions, and we are grateful for their commitment and dedication.    To find out if your Congressperson is on the list, go to http://parkinsonsaction.org/our-work/congressional-caucus/caucus-list-2/

Contact your Members of Congress today and ask them to show support for the Parkinson’s community by joining the Congressional Caucus on Parkinson’s Disease – or just take a minute to say thank you! Take action!

Exciting News!!!!!

Researchers in Singapore, working with Harvard University, have found that anti-Malaria drugs may have the ability to improve the lives of those of us with PD.  Read on:  http://www.cnbc.com/2015/07/15/potential-parkinsons-cure-unveiled.html

And finally, a video from Rock Steady Boxing in San Francisco.  For those of you who have not tried Boxing yet, what are you waiting for?  And to the women in Los Angeles, why aren’t you joining me at boxing at BoxNBurn in Santa Monica?  It is fun and an incredible workout.  (http://abcnews.go.com/WNT/video/parkinsons-disease-sufferers-fight-reclaim-lives-boxing-therapy-32405175)

Full Speed Ahead

One day in my boxing for PD class at Rock Steady Boxing, I noticed how many of us were moving at full speed, even when asked to slow down. Maybe it is because of the same medication that causes us to gamble, shop non-stop or exhibit other compulsive behaviors.  For  those of us who are not slowed down by PD, it seems that we  are always trying to win a race.  Even if there is no race.

Our boxing instructors tell us to slow down, that we take too many punches when at the punching bags, but those words seem to fall on deaf ears.  Even those who can barely move when they walked into class are trying to beat the bag to pulp.  Those 3 minute rounds are exhausting, but apparently if we stepped back from the bag once in a while like we are supposed to, we would not expend so much energy.  Think about watching a title fight – the boxers do not constantly throw punches as each other.  They dance around each other, throwing well placed jabs at the right moments.3d rendering of wavy piano keys

And the race is on for other activities as well.  I have been taking piano lessons for several years as therapy for PD.  Music is wonderful for the brain and playing the piano actually works both sides of the brain at the same time.  Each hand is playing something different, which means that your neurons on both sides of the brain must pay attention to get it right.  But somehow, my neurons don’t get the message that I should play a new piece slowly to learn it and master it.  So once again, it is full speed ahead.  My piano teacher just sits and shakes his head at me when I can”t slow down.

Yoga seems to be the only activity where I actuallly can relax and slow down.  But I havefound that I can’t do slower forms of yoga.  Vinyasa flow classes are best for me because I need to keep moving.  But fortunately, there is a pattern to yoga classes that actually forces you to slow down at the end and relax…….Shavasana has actually become my favorite yoga pose.  For those of you who don’t know yoga terms, Vinyasa flow classes begin with fairly vigorous poses and movements, which get your heart rate up as well as work on balance and strength.  Shavasana, or Corpse pose, is the reward for all of that work, when you get to lie on your back totally relaxed for a few minutes in a darkened room with quiet music in the background.

c001ee3d1a84aecc6d24a255dcb871afMaybe our boxing classes need to end with shavasana.  Wouldn’t that be a great reward for all of that hard work.

Parkinson’s Awareness Month

We have all been inundated with emails from different websites stating that it is Parkinson’s Awareness Month and encouraged to share our experiences on Facebook and other social media sites.  For me, it took a long time to come to terms with the diagnosis before I could even tell a few of my friends and family about it.  And even longer to get the word out to a broader audience.  Only when it became obvious that something was wrong and people started asking did I begin to open up.  Six years later, it is still difficult.

When I started writing this blog, it was a big step forward for me.  As my therapist reminded me, it wasn’t too long ago when I could not share with anyone.  Somehow, sharing my thoughts with others with PD is comfortable.  That is what Support Groups are for.  But I still can’t go the Facebook route, other than in closed PD groups, such as the one for Rock Steady Boxing NY/LA.

How do you handle this issue?  Please share what works for you.  Were you comfortable enough with your diagnosis to share with others immediately?  Or are you like me, still hesitant after many years.  It is a difficult issue, especially when your symptoms are under control and not very visible, like mine are at the present time.

The APDA wants us to post this on our Facebook photo.  Did you do it?  I still can’t.  Maybe next year.