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“YOPD Women, Diagnosis, and Symptoms” – Webinar Notes

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The webinar “YOPD Women, Diagnosis, and Symptoms” was presented by the YOPD Women Council at the Davis Phinney Foundation.  YOPD is Young Onset Parkinson’s Disease, where Parkinson’s is diagnosed earlier in life.  This was the first in a new webinar series for YOPD women, to be held the first Wednesday of every month. The panelists spoke of their experience with Parkinson’s, how they came to be diagnosed, unique symptoms they’ve had, and recommendations for how women can advocate for themselves. 

For more information on the YOPD Women webinar series please see the Davis Phinney Foundation (DPF) webpage.

Recordings can be viewed on the DPF website.

For notes on the February 3rd webinar, please see below. 

Regards,

Joelle

“YOPD Women, Diagnosis, and Symptoms”

Speakers: YOPD Council (see list below) 

Webinar Host:  Davis Phinney Foundation for Parkinson’s

Webinar Date: February 3, 2021 

Summary by Joëlle Kuehn, Stanford Parkinson’s Community Outreach

The speakers and members of the YOPD Women Council are: 

  • Kat Hill:  Davis Phinney Foundation Ambassador, and moderator of this webinar
  • Karen Frank:  Davis Phinney Foundation Ambassador
  • Gaynor Edwards:  founder of Spotlight YOPD
  • Heather Kennedy:  member of the YOPD Women’s council
  • Kathleen Reardon:  Professor Emerita of Business and Preventative Medicine at USC Business
  • Dr. Soania Mathur:  Davis Phinney Foundation board member

Mel Dizon was the host and is the Director of Education & Research at the Davis Phinney Foundation

YOPD is young onset parkinson’s disease where patients are diagnosed earlier in life. People with YOPD are a minority. This webinar series focuses on things unique to women.

Some symptoms that the panelists with YOPD had at the beginning of their diagnosis that may be unique to women: 

  • Sore muscles 
  • Tremors
  • Body aches 
  • Thinking it was “all in my head”
  • Finger/body twitches
  • Anxiety/Depression
  • Declining job performance

It takes women longer to get diagnosed than men. Many panelists were first misdiagnosed with anxiety, age, or perimenopause.

Female patients are treated differently. Kathleen asked her doctor to not use the word “complained” when describing her symptoms “complained of pain,” rather use the word “described,” because there is a different implication if a woman complains. As a woman, you have to be your own advocate. Words do matter. For women, it often gets discounted by doctors as “it’s all in your head.” Women themselves also may think it’s simply stress. 

Parkinson’s and Pregnancy:

  • Parkinson’s symptoms were amplified because Dr. Soania Mathur couldn’t take medications she was going to take because there was little known about the possibility of the medication injuring the fetus
  • Stuck to basics such as beta blockers
  • Delivery complication levels vary based on the pregnancy, and can be normal.
  • It is hard because there is little data and so genetic counseling is difficult  
  • Advice for women on how to advocate.
  • Try to be assertive
  • Try to work with your doctor, ensure you have the right doctor
  • Speak up, try to get past the topics of medication and exercise
    • Say “I’m doing X medication, Y treatment,but what I want to talk about today is A, B, and C”
    • Don’t allow issues already dealt with to be the issues discussed in the little time you have with the doctor
    • Need to be ready to prevent the appointment from going off on an issue that is relevant for a number of Parkinson’s patients, but is perhaps no longer relevant for you. Have confidence in your demeanor.
    • You want to ensure everything you want to address be addressed
    • Having a list is very important to ensure that everything is covered. If things aren’t covered it impact’s quality of life.
  • Need to understand what is your doctor’s style of communication
  • It’s ok to go to a second opinion or find a different doctor because your comfort and rapport with your doctor is key
  • Don’t worry about “being a bother” if you want to contact your doctor to have medications changed between appointments because often appointments are months apart. 
  • It’s possible that there are multiple diagnoses at play. Not every symptom is related to Parkinson’s. Be patient and ask for referrals to ensure you are getting the correct medication and treatment for your symptoms. 

Things that the panelists have started doing since their diagnosis that have been helpful:

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