Parkinson’s Awareness Month Week 3

April 29, 2021

Women and PD and Care Partners Resources

 Women and PD

Women and Parkinson’s Research and Care Agenda 
Download your free copy of the Parkinson’s Foundation’s Women and Parkinson’s Research and Care Agenda here

Women and Parkinson’s Disease- Parkinson’s Foundation 

What It’s Like to be Young, Female, and Living with Parkinson’s Disease 

YOPD Women’s Council Series– Davis Phinney Foundation 
Removing Barriers to Deep Brain Stimulation for Women – Davis Phinney Foundation 
Women and Parkinson’s DiseaseDavis Phinney Foundation

Twitchy Woman 
Sharon Krischer was diagnosed with Parkinson’s Disease in October, 2009 after several years of experiencing odd symptoms.  Ever since she has read everything she could find on Parkinson’s with the goal of finding a way to move on – literally – and not be defeated by the disease. She has created a community supporting women with Parkinson’s disease. 
Sunday Mornings with Twitchy Woman 
Twitchy Woman – Peer Support Program for Women
Twitchy Woman: My Adventures with Parkinson’s 

Role of Estrogen in PD 
While it is unclear exactly how estrogen effects Parkinson’s, markers of estrogen exposure are linked to when women begin experiencing symptoms. An article published in the Journal of Neurology, Neurosurgery & Psychiatry found that women who go through menopause later in life or has more children is more likely to experience delayed onset of symptoms. The American Journal of Psychiatry studies have shown that women have more available dopamine in key areas of the brain, signifying estrogen may serve as a neuroprotectant for dopamine activity. 

Starting a Women’s Only Support Group 
Are you interested in starting a women’s only Parkinson’s support group in your community? The Davis Phinney Foundation provides a great resource for women interested in starting a women’s only Parkinson’s support group. Get your free How to Start a Women’s Only Support Group facilitator guide here

Care Partners 

Care partners play an essential role in the quality of life for people living with Parkinson’s. Whether a spouse, child, parent, or friend, they take on many responsibilities. Care partners are just that- partners in the management of Parkinson’s disease. While they are taking care of their loved one, it is just as important for them to take care of themselves. You can’t pour from an empty cup, right? 

Role of the Care Partner 
Care partners take on a number of responsibilities and roles in caring for their loved on with Parkinson’s including daily tasks, planning, and emotional support. The Davis Phinney Foundation provides a “small” list of some of the tasks care partners must learn how to do: 

  • Manage medications, appointments and care teams 
  • Manage outsourced and respite care 
  • Switch roles on a dime – from spouse to care partner
  • Adapt or modify a home to be safe and accessible 
  • Navigate a complex healthcare system 
  • Become an advocate for their loved one 
  • Speak loudly when necessary 
  • Have uncomfortable conversations 
  • Battle insurance denials 
  • Do background research on billing codes 
  • Ask a lot of questions to people who aren’t thrilled to give answers (i.e. overworked billing clerks) 
  • Question medications and treatment plans 
  • Make end of life plans 
  • Be the executor of wills and trusts 

Care Partner Burnout 
It is essential care partners prioritize taking care of themselves. It is a big change to care for a loved one and can take a toll physically, mentally, and emotionally leading to compassion fatigue. A strong support network is crucial for care partners as much as the person with PD.  

How to Stay Healthy and Avoid Burnout as a Parkinson’s Care Partner- Davis Phinney Foundation
Mental Wellness for Parkinson’s Care Partners- Davis Phinney Foundation

Care Partners– Michael J Fox Foundation 

The Parkinson’s Care Partner Digital Toolbox– Davis Phinney Foundation 
Read more >> 

Care Partner Summit | Cumbre Para Cuidadores 
The Parkinson’s Foundation Care Partner Summit | Cumbre Para Cuidadores is designed with care partners in mind. It is recommended for anyone who cares for someone living with PD. This year, the Summit will take place online in partnership with the Parkinson’s Foundation PD Health @ Home program. 

Learn more and register here.  

Nebraska Caregiver Resources 
Nebraska Lifespan Respite Network  
Nebraska Caregiver Coalition 
Nebraska Caregiver Coalition Facebook page