StoryCorps: Anissa Mitchell and Joan Lincoln discuss their personal experience as caregivers

Listen here https://archive.storycorps.org/interviews/anissa-mitchell-and-joan-lincoln

and/or read here

SUBJECT LOG / TIME CODE

01:02

AM asks JL about how they first met. They met at a support group for people with Parkinson's in Florida. JL says that the support group gave them a chance to meet people with similar experiences.

02:35

JL shares that her husband was diagnosed in 1992 when he was with his previous wife. His wife died suddenly and JL helped him through the grief process as friends, but they eventually started a relationship and got married in 2004.

04:57

AM asks JL about her experience marrying her husband, Steve, when she knew he was diagnosed before their relationship.

06:58

AM asks about Steve's symptoms that range from motor skills to delusions. JL shares that he experienced both loss of motor skills and hallucinations. AM asks JL how she coped with her husband's symptoms. JL shares that it was difficult because they moved away from their initial support group.

16:22

JL shares advice for other spouses who will have to transition to the role of a caregiver. She shares small moments that help her through this transition. AM also discusses the emotional factor of being a caregiver to a loved one.

24:18

AM asks JL about protracted grief and how her experience being widowed twice. JL shares her grieving process and when she knew that she needed to seek additional help for Steve.

32:13

AM shares about her experience as a caregiver for her mother. She speaks about protracted grief and the difficulty of seeing her mother become helpless due to her Parkinson's symptoms.

34:20

AM and JL discuss navigating guilt as caregivers. They discuss finding outside care and visiting their loved ones.

40:44

AM shares the importance of compartmentalizing when it comes to being a caregiver. AM says that at the points her mother really needed her support, she did not want her daughter the social worker, she just wanted her daughter.

Why should people with Parkinson's dance?

Dancing Your Way to a Better Quality of Life with Parkinson's

https://parkinsonsdisease.net/living/dance-therapy

Dancing Helps People With Parkinson's Disease

https://www.forbes.com/sites/evaamsen/2019/04/30/dancing-helps-movement-for-people-with-parkinsons-disease/

“You get a sense of your body and are pushing your body to do things you don’t think you can accomplish,” says Brown, who was diagnosed in 2008 with the neuro­degenerative disease. “There is something about the music and movement together that seems to help at a different level. … I come out of the class feeling energized and relaxed, all at the same time, and ready to move.”

https://stanmed.stanford.edu/2017winter/dance-for-parkinsons-disease-at-the-stanford-neuroscience-health-center.html

Evidence from more than 40 peer-reviewed scientific studies serves to underpin the effectiveness and benefits of the Dance for PD teaching approach. The program has been featured in such media channels as The New York Times, USA Today, NBC, CNN, NPR, and The Guardian and has received multiple awards for its groundbreaking work.

https://danceforparkinsons.org/

Check Out the 6th Edition of "Every Victory Counts"

First published in 2010, the Every Victory Counts® manual broke new ground as the only resource of its kind, devoted solely to the principle of proactive self-care and a holistic approach to managing Parkinson’s. In subsequent editions, it has gained international recognition as a superb and comprehensive resource for changing the way people live with Parkinson’s. Now in its sixth edition, the manual is the cornerstone of our new Every Victory Counts suite of resources, a robust collection of printed and digital manuals (including a new Every Victory Counts Manual for Care Partners) that embrace the Davis Phinney Foundation’s philosophy of taking action to improve your quality of life with Parkinson’s.

https://davisphinneyfoundation.org/every-victory-counts-manual/