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.

A Need to Help Others:  One Woman’s Story

Sunday I had the pleasure of meeting with a group of women with Parkinson’s in Glendale, a suburb of Los Angeles.  Tricia Low had pulled together the group to discuss issues related to Women with PD.  Tricia is amazing.  Her father had Young Onset Parkinson’s so she knew when she started having symptoms at a young age, that she, too, had PD.

The first thing Trish noticed was that her handwriting started to look like her father’s.  She was a labor and delivery nurse and about a year before she was diagnosed she realized that couldn’t read her own handwriting in patients charts.  Her father was diagnosed in the 70’s and the one thing she remembers from that time is that it affected men more than women.  So she never thought that she would get PD.  Looking back, she thinks her symptoms probably started a year earlier, but she ignored them.

First she went to a local neurologist.  He ordered bloodwork and her results were “wacky”. They realized that she probably had Leukemia in addition to Parkinson’s.  The first doctor was not very positive.  He talked to her husband, not to her, in spite of the fact that she was a nurse.  He did not give her any information, so she began to look elsewhere.

She first went to Huntington Hospital, which was filled with “old people with white hair”.  There was no one there her age. She went to hear a doctor there who was speaking about Parkinson’s  and she went up to him and explained that the first doctor put her on Requip and she was havinga bad reaction to it.  The first doctor said she would get used to it.  The second doctor disagreed, so she changed doctors.  He took her off the Requip and made some other changes.

In 2007 she retired from nursing after 25 years. She then became a coordinator for the Parkinson’s Association in the Valley.  The doctor who was working with her found it difficult to maintain a personal relationship with her and be her doctor.  So again she looked for another doctor.   She eventually got an appointment to see Dr. Jeff Bronstein at UCLA and has been happy ever since.

It took about 5 long years to finally get to the right doctor, which has made a huge difference.  

Trish says there are  4 things we must do to cope with PD:

  1. Keep a positive attitude
  2. Exercise every day
  3. Advocate for yourself
  4. Always check for the latest information on the internet

She is always trying new things.  She goes dancing, she boxes to get out the aggression.  She has been inspired by Dr. Maria de Leon’s book to become a Parkinson’s Diva. She prays.  She is a religious person and prayer is very important for her.  Also, her grandfather told her that if you get dressed every day, put your make up on and look your best you will feel better.  Its a great way to keep going.  “I always tell people that I am a pretty package, but a mess inside.”

What makes her story so unique?  She did not expect to be fighting two different diseases at the same time.  She has had 4 DBS implants because she broke the first set!  She fell off a step-ladder and snapped the wires in half.  She set a precident for patients after her because the doctors changed where they anchored the wires so that it won’t happen to other people.

Her advice to the newly diagnosed:  each time you lose something that you can’t reverse, take the time to grieve about it to get the negative out of you.  Exercise every day 30 minutes.  If you believe in God, or some other higher power, get close to them.

Finally, Trish says “what  keeps me fighting is I still have a  purpose to my life. One of my passions is  ‘Caring for people and helping  them along the way.’  So I went from Nursing Moms’& Babies to Parents & Preemies to helping adults with PD.  I want to help them. But having a PURPOSE is high on my list of surviving both my diseases. This truly the end of my
story.” 

   DJ Crawford (Trish’s Mom), Maryanne Moses, Trish Low, Zahra Ehssani, Sharon Krischer and Deanna Ahmed