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.

Did Trauma during Childbirth set off her YOPD?

I met Lisa Boyd in boxing classes several months ago.  She is in her late 40’s, and it was sad to see her come in to class with a walker.  After a few weeks of exercise, she left the walker behind and began using only a cane.  Like many with Young Onset PD, it took a while for her doctors to finally make the diagnosis. In the meantime, her health deteriorated quickly. Her grit and her spirit to work through her physical disabilities, always with a smile,  is inspiring to us all.

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Lisa Boyd and Gail Buckley
Lisa’s story is very different from many others in our group of Inspired Women with Parkinson’s.   She was pregnant with her second child at age 41.  The pregnancy went well, but there was a mishap during the delivery and she never recovered.  She began noticing things almost immediately afterwards. She would drop her baby, she started losing her balance.  The doctors told her she was just depressed, there was nothing wrong. She insisted there is something wrong going on.  For 2 years they kept telling her she was crazy.  Then they said she had AIDS (she didn’t), asked if she was a drug user, etc.   She did not have a tremor for two years, so people couldn’t see what was wrong.   She was stumbling over her feet, choking on her food and water.  She was a new mom who could not take care of her child.

She moved to Atlanta about two years later and eventually went to the Neurology Department at Emory.  They found she had all 10 symptoms of PD.   She finally got her diagnosis 2 1/2 years after her son was born.  Lisa said she had to advocate for herself to get anything.   Prior to going to Emory no one thought she had PD because she was so young.  In addition, because she is African-American woman, she had to fight to get good health care.  She had to demand that Emory see her as a patient. The doctors now say that the trauma from the birth most likely triggered the symptoms of Parkinson’s Disease, which was probably there all along.

She has changed her diet, which made a big difference in her life.  She tries to eat as clean as possible, with no processed foods.  She takes turmeric, blueberries, strawberries and flaxseed for inflammation.  All of these have helped.

She was very depressed for a while, but eventually decided not to let it get to her.  She does self-affirmations and tries to be around positive people whenever possible.

Her advice to the newly diagnosed:  try to spend time with other women with Parkinson’s.  Being around people who understand what you are going through helps.  There are not a lot of women with Parkinson’s and even fewer African-American women with PD, so she wants to get into support groups to meet others.  Another woman in our group said that the one of the best things about having PD is meeting other women who understand and you can talk to about your problems.  She has made some great new friends as a result.

In response to a question about how her children respond to a mother with PD, Lisa says her son, who is 7, has never known her any other way.  But her 23 year old daughter knows how active Lisa was and wants her to get back to the way she used to be.  She used to be Superwoman. Cheer Mom, PTA, active in her church, but she can’t do those things anymore.  Her daughter is supportive, but now that Lisa can’t do everything for everyone anymore, the whole dynamic of the family has changed.  It also affected her relationship with her husband whom she had been with since she was young.

She now knows what she has to do to modify her activities so that she can get out of the house.  She has extremely supportive friends, but some have disappeared, a common problem with many of the room.  She is now going through a divorce and the stress has made her worse, but she is looking forward to getting back to boxing and exercise very soon.