The Caregiver's Journal hosted by Lance A. Slatton with Cindy (PT) & Christina (ST) Hardin-Weiss.

 

The Caregiver's Journal is the show where we are sharing the caregiving experiences, stories, and wisdom of family caregivers.

 

Chapter 15 - "Caregiving Love":

 

About Mary Whitehead:

 

Mark & I have been partners in life since our first date, a Heart concert, in 1978 followed by our marriage in 1979. Together we raised two children, and along the way we helped care and provide for parents & grandparents throughout their illnesses and aging in place or in senior living centers. I call myself a care partner vs. caregiver because Mark does not need my assistance for everyday tasks. We both use our strengths that complement each other on this path with Parkinson's and several other chronic illnesses he lives with.

 

My late mother was my inspiration. In my mid-teens I watched her, over the course of two years, lovingly care for my dying father (lung cancer). I could not have had a better, in-home example of someone who did everything, including care for him, with love. I am married to the most wonderful man who insisted that my mom live with us for what totaled the last 12 years of her life so that she could have a comfortable life with no expenses and be cared for by us after having a massive heart attack two years before she passed away.

 

When Mark was 47, as we became empty nesters and were poised to live out some dreams that were not feasible during our first 2+ decades together, a diagnosis of young onset Parkinson's Disease brought our hopes, plans, and his career to a screeching halt. But it couldn't completely stop this incredible human being, artist, musician/composer, man of many hobbies and a higher math maniac. I like to tease him about trying to share multi-page equations with me for discussion. Side note: he even took an online math course through MIT and I insisted that he buy one of their hoodies to wear proudly. There is so much to Mark that we could never cover in one conversation but rather than dwell on the PD, he prefers to pursue and concentrate on what he CAN do.

 

We cultivate humor and wit in our relationship. That's where "Tenacious M" - my care partner/gansta moniker comes from. I combine it with my Cornermam enthusiasm to encourage Mark's boxing workouts (excellent for PD) and – like a beagle in a brush pile - I pursue every challenge face head on, whether it's an insurance or pharmacy snafu, etc. Together, we face every aspect of living with PD. And we are both are dedicated PD research participants at Washington Univ., St. Louis, MO, also the location of Mark's neuro, Dr. Joel Perlmutter (definitely the top doc). I, along with two of our friends are in the non-PD control group. We all have pledged to donate our brains at the end of our lives for PD research.

 

In 2013, inspired by a Parkinsons Foundation resource kit, we created a PD Awareness & Research fundraising blitz, raising nearly $3k for Dr. P's research. Friends, family & my coworkers held Pancakes for PD, Dine-out nights, a proclamation by our city mayor, and, among many other activities, we raffled a beautiful quilt that Mark & I designed, and I did the hand-embroidery.

 

Like the motto in our Parkinson's & Dystonia private FaceBook group, we will never give up.

 

And I'd like to credit the group's founder/lead admin, Erika, for creating a safe and supporting space for people with PD and the caregivers & care partners.