PD Women come together in Los Angeles

The vitality, focus and awareness was indeed a “Factor” in yesterday’s gathering.This stellar group of women is committed to being  proactive and is gaining momentum and encouraging the greater PD community to become knowledgable and to share in our plight.

Cheryl K

logo_women_and_pd_2015_tintedSunday, January 17, 13 women met  for the first time at Factor’s Deli in Los Angeles as part of the Parkinson’s Disease Foundation’s Women & PD Initiative.  This diverse group of women included several with early onset PD, a couple who had recently been diagnosed and one who has had PD for 24 years and is doing great!  We all shared our experiences with being diagnosed or misdiagnosed, bad doctors, good doctors and more.

PDF Research Advocate Kristin Mendenhall educated us with  a comprehensive  Power Point Presentation about Parkinson’s Disease, research and the need for all of us to participate in clinical trials and to advocate for more funding at the NIH and other institutions.  We learned about local trials at UCLA and USC that we may be able to participate in.  Another fascinating project that she talked about is serving as a trial patient for medical and physical therapy students so that they can learn  about Parkinson’s Disease from a real person with Parkinson’s.  We need to find out how more of us can get involved in that.

We also talked a lot about exercise and the need to keep moving.  Roberta Marongiu, owner of Rock Steady Boxing NY/LA and a neuroscience researcher at the Weill Cornell  Medical College in NY , spoke about the boxing program and filled us in on some of the stem cell studies currently taking place.

We also talked about the upcoming World Parkinson Congress in Portland, Oregon.  I was happy to see that several of the women are planning to go.  Roberta, who attended the last WPC,encouraged everyone to go because it is an amazing experience that is not just for scientists and doctors.   There are many lectures, workshops and other things geared towards people with PD and their partners or caregivers.

The enthusiasm in the room was high.  The women were hungry for information and never hesitated to ask questions.  Two women, who had been afraid to be around other women with Parkinson’s, walked away with a new appreciation for being part of this exclusive group of women with PD.  They all left wanting more.  When asked about scheduling another meeting, the answer was a resounding “yes!” Several have offered to help planning future meetings which might include a Dancing Through Parkinson’s demo, a chance to get in a boxing ring, hear from a local doctor or researcher and even a “gripe session”.  Our next meeting will be on March 6, somewhere in Los Angeles.

If you are a woman with PD living in Los Angeles and would like to become part of this group, please let me know and I will add you to our list.

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5 responses to “PD Women come together in Los Angeles”

  1. My name is Jennifer, I am 51 years old, and was diagnosed with PD last April. I live in Manhattan Beach, and would like to be able to participate in your next meeting in the Los Angeles area. Thank you .

    1. Jennifer. I will put you on the list. What is your email address?

    2. Jennifer, can you give me your email address so I can send you the info on the next program when I have it. Email me at twitchywoman18@gmail.com

  2. Please add me to the list for the Parkinson’s Disease Foundation’s Women & PD Initiative group. I would like to attend the meeting on 3/6. My email address is plmunis@gmail.com.

    Thank you, Phyllis

    On Mon, Jan 18, 2016 at 8:56 PM, Twitchy woman wrote:

    > skrischer posted: ” The vitality, focus and awareness was indeed a > “Factor” in yesterday’s gathering.This stellar group of women is committed > to being proactive and is gaining momentum and encouraging the greater PD > community to become knowledgable and to share in our plig” >

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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.