Odds & Ends

Lots of things to share this week.

First, about sleep problems.  I found a Yoga Nidra meditation by Jennifer Piercy that I really like.  It is called Yoga Nidra for Sleep and can be found on a website called DoYogaWithMe.  I don’t think I have stayed awake until the end of the meditation yet.  Now I just need my dog to sleep later in the morning so I can sleep in.  Someone else mentioned that they like Jennifer Reis’s Yoga Nidra CD.  I have not checked that one out yet.

Second, Lisa Boyd, whose story I featured last summer, titled Did Trauma During Childbirth Set off her YOPD?, had an article published on the Michael J Fox Foundation website.  You can read it here.

Cheryl Kingston, another member of the women’s group that I run, has also had several articles published on the MJFF website in the last year. They are Moose vs. Mouse,  The Many Masks of Parkinson’s, and  To Tell or Not to Tell: Secrecy and Privacy

This past weekend, the Michael J Fox Foundation hosted the Parkinson’s Policy Forummjf-advocating in Washington, DC.  200 members of the Parkinson’s community from across the US had the opportunity to meet with their congressperson and/or Senators after an intense day of training.  Darcy Blake has written about her experience in her blog post Parkinsons Women Support.   Thank you Darcy for your summary of the  forum.  If you would like someone to speak to a group about advocacy and lobbying for PD, check with MJFF to see who attended from your area.

Finally, I will be working with the Parkinson’s Disease Foundation for the next two years on a program titled  “Women and PD Teams to Advance Learning and Knowledge,” or Women and PD TALK .  PDF received a $250,000 PCORI (Patient-Centered Outcomes Research Institute) award for this program in an effort to address long-standing gender disparities in Parkinson’s research and care.  The press release went out yesterday and you can read it here.

I am very excited to be a part of this project.   Multidisciplinary teams, which include experts in the patient, research, and health care communities, will be charged with identifiying women’s needs and prioritizing solutions. 10 regional forums, designed to educate and collect the insights of women with Parkinson’s, will drive the project. Experts will utilize these insights to develop an action plan to change the landscape of Parkinson’s care.

 

I am looking forward to sharing more with you as we proceed over the next two years with this exciting project.

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.

Exercise and PD

The Poll Results are in!  Thank you to all who responded to this most unscientific poll.

There have been 52 responses so far to the question:

What is your preferred form of Exercise for Parkinson’s Disease?

Walking                                                  10

Swimming                                               7

Boxing                                                     6

Dance                                                      7

Yoga                                                         5

Pilates                                                     4

Tai Chi                                                     2

Tennis                                                     2

Cycling                                                    3

Strenth/Weight Training                       3

Running                                                  1

Elliptical                                                  1

Sandduneusa (what is this?)                 1

wpc2016_logo_courriel_300dpi

On Tuesday I will be traveling to Portland for the WPC.  I am looking forward to meeting up with friends from around the country, hearing about the latest research and learning about living life to the fullest with PD.  I will try to post a summary everyday and will write more in depth after I return home.

I will be volunteering in the Parkinson’s Foundation booth on Wednesday from 11:00-1:00. Stop by and say hello if you are there.  In addition, if you would like to tell your Parkinson’s story, to be published in this blog at a later date, I would love to meet with you.  Either stop by the booth, or contact me so that we can arrange to meet.

 

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.

 

 

 

Parkinson’s Awareness Month and More

There is much to share with you this week.

April is Parkinson’s Awareness Month.  Join the Parkinson’s Disease Foundation Team During Parkinson’s Awareness Month    Friday, April 1- Saturday, April 30 (Online & around the US)

What will you do to help raise awareness this April, Parkinson’s Awareness Month? Join the team to #EndParkinsons with PDF and help make a difference in the PD community!

Click Here to Learn More

Last month, my Movement Disorders doctor, Indu Subramanian, asked me to write about my experiences with yoga and PD for the Brian Grant Foundation’s Power Through Project.  She worked with a yoga instructor to produce videos for the website about the benefits of yoga for People with Parkinson’s.  My story and Dr. Subramanian’s videos are now up on the  Power Through Project website.

Sunday, we had another great meeting for Women living with PD in Los Angeles.  Invertigo Dance Theater’s Sofia Klass and Linda Berghoff (also a PWP) teach Dancing Through Parkinson’s in various locations around LA.  They led us through dance sequences IMG_0824designed specifically for people with Parkinson’s Disease.  Special thanks to the The Wallis Annenberg Center for the Performing Arts in Beverly Hills for hosting us.  I had the opportunity to interview 2 more women about their experiences with Parkinson’s.  This has been a great way to share our journeys with other women and to help all of us better understand this disease that is changing our lives.  I will post their interviews later this week.

Have a great week.

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