This month, I had the pleasure of interviewing Cindy Petker. Many of you may know her and her husband, Rich. Rich has Parkinson’s and Cindy is his care partner. Cindy grew up in Saratoga Springs and would spend her summers working at Caffe Lena and the racetrack. She graduated from SUNY Binghamton with a BA in music and Mass Media Communications. Throughout the years, she has worked as an editor, in sales, and held several managerial roles. However, when she and Rich received the diagnosis, they both decided it was best for Cindy to retire even though she was not at retirement age. They were in a very unique position as Rich is a VietNam veteran, which allotted them opportunities that allowed Cindy to retire early. Rich developed PD and type 2 diabetes from exposure to Agent Orange while he was in the war. Cindy shared that she "recognize(s) that a lot of people don’t have the choice to retire early” but also can’t help to think they wouldn’t be in this position if it wasn’t for the war.

When asked what a care partner means to Cindy, she shared “in the early years, I considered myself a care partner, as we both took part in our mutual life decisions and responsibilities." Cindy's husband, Rich, always loved to cook but as his disease progressed, he had to stop cooking. Over time, Cindystarted to wear "all the hats" where she started to become a caregiver more than a care partner. "I feel like I should have a hat with a cutout window in the front and a wheel with all the household jobs and life responsibilities on it and I just turn it to whichever is appropriate at any given moment." Cindy still tries her best to include Rich as much as possible by doing bills together - having him write out checks, telling Cindy who to pay and how much, etc. I think most care partners can relate to Cindy when she says she feels responsible to keep her husband involved in whatever he can do for as long as he is able to.

One of the toughest parts of being a care partner is to not lose yourself in the process. Cindy said she is still trying to learn how to make time for herself. People from her care partner support group suggest taking 5-15 minutes for yourself here and there. She shares when she goes shopping, she might take the longer route home for a few extra moments alone. She also takes her time in the bathroom and shower to sneak in a few extra minutes. "I, like other care partners I've spoken with, have found that we really don't know what we enjoy anymore or we don't seem to enjoy the things we used to" says Cindy. Cindy shared that sometimes she has thoughts like "so much of our lives is molded around them and what is needed but what happens if they aren't around to need us anymore?" and then she realizes that the laundry needs to be done and that thought passes.

Cindy does work to find support for herself. Cindy attends an online caregiver support group through the VA once a week. She has made friends with other care partners in the group and they meet online after each meeting for another hour. They all try to meet up for lunch once a month. Once a year, Cindy embarks on a women's singing retreat while Rich's son stays with Rich for the weekend. Cindy finds the retreat to be refreshing and supportive, both emotionally and spiritually. For those of us who are not care partners, this all really highlights how hard being a care partner can be and how little time you can have for yourself. I am so in awe of the selflessness, honesty, and strength Cindy exudes. If you get anything from this interview, please check in on your care partner friends. Offer support, help, humor, distraction, love, and friendship.

Cindy believes living well with PD means "helping Rich live the best life he can physically, emotionally, and socially which allows me to live the best life I can as well. It means not letting PD get in the way of anything if it's at all possible. I think for me it means that, while not being in denial that we do have to deal with PD and the huge impact it has on our lives, we try to think and act like it's not a deterrent to the extent that we can."

Advice from Cindy:

"Join a support group: Capital District Parkinson's Support Group ( https://www.cdparkinsons.org/ ) or any others available that resonate with you. The folks we've met through the Capital District Parkinson's Support Group and  the PD exercise groups are some of the most friendly, supportive, sharing, smart, interesting people we've ever met. Amazingly, for a terrible disease which you wouldn't wish on anyone, PD brings gifts to be grateful for and meeting the people we've met because of it is one of the most extraordinary & unexpected gifts. Try to notice and focus on the gifts."