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.

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A Note To My Readers


I love to see your comments and get your emails as we share our collective experiences. But based on a couple of private questions from some of you, remember, I am just a lay person and a patient like the rest of you. For medical and similar advice, you need to talk to your own doctor

Twitchy Woman

Twitchy Women partners with the Parkinson’s Wellness Fund to ensure we have the resources to offer peer support for women with Parkinson’s.