Written by Connie Carpenter Phinney 

Our October Care Partner Meetup featured the first person with Parkinson’s to join our panel as a guest. We welcomed Allan Cole, who lives with Parkinson’s, and his wife of 32 years, Tracey.

The Coles have been living with Allan’s Parkinson’s for eight years. They have two teenaged daughters and live in Austin Texas, where Allan is the Dean of the School of Social Work at the University of Texas. A self-described academic, Allan has written widely about his experience with Parkinson’s and created PDWise.com to share his experiences. Tracey is also a social worker and in the capacity she had she worked with people with Parkinson’s prior to Allan’s diagnosis.

This month, our panelists included Davis Phinney Foundation Care Partner Ambassadors Gail Gitin and Pat Donahoo. We were also joined by Polly Dawkins. 

If you haven’t already signed up to attend our sessions live, you can do so today.

MEETUP NOTES

Tracey and Allan agree that Parkinson’s has enriched their lives.

During our conversation, Tracey said, “Our life together is incredibly full with all the people we have around us and also by helping people with Parkinson’s that have come into our lives.” Allan added, “It’s both something you don’t want, and something that, in some ways, you’re grateful for.”

I asked Allan and Tracey what the hardest thing was for them, in consideration of their shared background in social work. Their answer was that they complement one another, but they noted that, even with their backgrounds, they don’t always “get it right.” They said their capacity to listen and have empathy serves them well. Being present for people is the core of social work, and they have learned to meet each other where they are, not where they wish they were.

Tracey said, “In spite of the challenges, what is really key is to be present for each other,” and the Coles acknowledged that there are many losses involved because of Parkinson’s and that listening actively and staying calm are keys for them.

SOME WAYS THROUGH THE EARLY DAYS

The Coles have found a way to keep humor through all the hardest times, but that’s not the only tool they use. Allan observed that Tracey gave him the gift of letting him “get where he needed to get” regarding his diagnosis and to do so in his own time. Allan said,

“Tracey believed I was going to be okay and knew it in her heart before I could even give that a chance. I didn’t know much about Parkinson’s. I assumed that my life was over, and you know all the things that are kind of, you know, characteristic of people who are naive. She knew a lot more than I did, and she helped me get up to speed, and I told people she believed for us until I could believe it myself.”

Speaking more about his decision to reveal his diagnosis, Allan said, “I was terrified. I thought, ‘I’m in the prime of my career.’ People are going to think I can’t do my job. How am I going to send my kids to college? For about 10 months I was silent, but then I had the two hardest conversations I’ve ever had: one with my parents and one with my kids.”

Allan admits that some of his initial assumptions about life with Parkinson’s were inaccurate, and he said, “For me. I wish I’d been public about [my diagnosis] sooner, because I carried a secret, and the secret started doing more damage to me than I envisioned being public about Parkinson’s would ever do.” He also said, as a teacher who encouraged his students to live and work with authenticity, it became clear that harboring a secret wasn’t an option. For Allan, it became a matter of conscience.

QUESTIONS FROM OUR LISTENERS

RESPONDING TO RESISTANCE

A listener asked about how to break through the resistance of a person with Parkinson’s who refuses to seek help other than medication, such as physical therapy, counseling or support groups.

After suggesting that faith community leaders may be helpful with this, Tracey said, “I think that’s really hard when a person is experiencing so much resistance, but try to understand why [your person with Parkinson’s] doesn’t want to get the help.”

This is, of course, a tough situation. Parkinson’s is a disease of management, and if you fail to manage it, not only will be harder on the person with Parkinson’s, but it’ll be much harder on the care partner. What can the care partner do? It’s fair to ask for or recruit a third party to intervene.

On this subject, Allan added, “Tracey’s helped me understand that by my allowing others to care for me, I’m giving them something in return, just like they give me when they allow me to care for them.” He adds he has had to step out of the role he is used to in order to navigate Parkinson’s, and that this has included learning how to ask for and accept help.

NOT WANTING TO NAG

Care partners ask us often why they always have to be the nag. One factor in this is that we know <a href="https://d