WPC Day 2

Well, I made it on time this morning and headed straight for a session called Synchronizing Breath & Movement for Body Alignment and Posture Integrity, a long name for what it calls in parentheses (IMG_0001.JPGChair Yoga).  I did not expect much after seeing “Chair Yoga” and was pleasantly surprised.  We learned a lot of breathing techniques, including one called “Box Breathing” which the yoga instructor, Aminta Romero St. Onge, said is great for helping with sleep problems.  I will try it and let you know if it works.  And we did some yoga too.  It was a well spent hour.

The morning plenary was was titled Genes and Mechanisms of Sporadic PD.  I missed the beginning, so I have no idea what Sporadic PD is.  Beate Ritz, of UCLA spoke about the effects of pesticides on Central Valley farmworkers (in California) and the increased risk for PD among this population.  Alice Lazzarini told about her transformation from PD researcher to PD patient, an ironic situation that is more common than one would think.  I know of several others.  Finally, Jason Karlawish talked about what you can do with the information that you get from genetic testing for PD, and for other diseases.  He raised many difficult questions about what to do with the knowledge that we will suffer from PD, dementia, Alzheimer’s or other degenerative diseases.  What are our options?  What are our responsibilites to ourselves and our families.

After the session ended, I proceeded to check out the many posters displayed in the exhibit hall.  I needed something more uplifting after that last talk.  There are hundreds of posters on display about research projects from around the world, foundations for PD, exercise programs, nutrition.  It was amazing.  Some of the pimg_0006eople were there to talk about their posters and explain what they are doing.  I have never seen anything like this before.  They actually have tours of the posters that you can sign up for.  Each tour has a different theme.  I did not sign up for a tour, but wandered through, talking to people about their work.   Here is the poster from the Parkinson’s Disease Foundation about the Women and PD Initiative that I participated in last September.  It describes the program and its goals, and the outcome one year later.  I am proud to say that I am represented in 2 sections of the pie chart, both in Media and Repeating events.

In the afternoon, I  bailed out on Sleep Difficulties and headed to Becky Farley’s PWR! Nexus program.  Becky is fabulous!  The room was packed with people eager to move after sitting all day.  And move we did.  Sitting, standing, getting on the floor.  Everyone had a great time.  Here is a 5 second short video of one of the moves.

I went to one last session on Speech and Swallowing and then back to the posters to see several friends do their presentations.  More on both tomorrow.

PT or not PT?

On Sunday, our Inspired Women with Parkinson’s in Los Angeles group met with Dr. Ali Elder of [re+active] physical therapy and wellness in Los Angeles.  Dr. Elder spoke to us about the benefits of exercise for People with Parkinson’s (PWP) and showed slides of dopamine in the brain before and after exercise.  Exercises can delay the progression of the disease and the release of dopamine in our brains can make us happier.

The bottom line:  Exercise is medicine, don’t forget your daily dose!  Exercise on a regular basis, but make sure that it is something that you enjoy.  The fact that you enjoy it is a result of the increased dopamine in your brain.  And the exercise does not have to be limited to just doing cardio on a bike.  Dancing, hiking, walking, yoga, boxing, tennis and more have been shown to not only increase our dopamine, but also our flexibility, balance and general well being.

So when and why should you see a physical therapist?  According to Dr. Elder, you should be seen immediately after diagnosis.  An assessment will help determine how the PD is affecting your gait, your reflexes, balance and much more.  Exercises can be assigned to address your issues and help to slow to the progression of the disease.  It was recommended to start with one visit to get a baseline of physical function and then the frequency of follow-ups can vary from once per week, once every six month and everything in between.

A physical therapist can also talk to you about taking your medications properly and the effects of food on your medications.  Only a few women in the room had actually gone to a physical therapist.  Most of us did not know that this was an option for us.

Finally, Dr. Elder and her assistant, Jazzy led us through a PWR!Moves workout.   PWR!Moves is a PD-specific skill training program to maintain or restore skills that deteriorate and interfere with everyday movements.  There are 4 basic exercises designed to address symptoms related to Parkinson’s. PWR!Up, PWR!Rock, PWR!Twist and  PWR!Step.  After going through different versions of each of the 4 exercises fairly confidently, we then had to walk across the room throwing a scarf in the air and catching it with the opposite hand.  Chaos ensued.  Just when you think you have figured it out, your balance is affected.  Try it and see what happens.

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Photo courtesy of PWR!

 

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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