My Life With Parkinson’s Disease: It’s Complicated

This was written by Lisa Cone, one of the women who attended the Women & PD Initiative with me. It was published in Everyday Health last week.
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Lisa Cone

Life is complicated, right? As I write this, I am in my early fifties, newly single, recently moved for the fourth time in two years, and in the midst of coping with my beloved dog’s cancer diagnosis. Yes, you could say life feels complicated — as it so often does for women who are balancing career, relationships, family, and aging parents.

Ready for another complication? I am living with young onset Parkinson’s disease (PD). After my diagnosis seven years ago, I quickly learned what many people with a chronic disease already know — managing Parkinson’s adds another layer of complexity to life.

In life with Parkinson’s, it quickly became apparent to me that, in addition to my full-time job, I now had a second one — CEO of my own health care. Imagine managing an internist; a neurologist; physical, speech and occupational therapists; the occasional orthopedist; a chiropractor; an acupuncturist; a pharmacist; an ob-gyn; a neuropsychologist; a psychologist or counselor and … phew!

Not to mention the complicated medication schedules. I set multiple alarms every day to make sure I take my 15 or so pills on time and keep my symptoms at bay.

I was handling these complications pretty well. But then life threw two more at me … the loss of my career (I gave up my job to go on disability due to Parkinson’s disease) and the end of my marriage, all within a three-year period.

At that point, life felt too complicated. Losing my professional identity while adjusting to the burden of living without a “built-in” Parkinson’s
disease caregiver — it was a lot to handle. Alongside peers without Parkinson’s, I felt isolated. Who can understand what it’s like to balance this type of life — the work and effort and time it takes to simply manage my disease?

Then, two months ago, I met 25 other amazing women who also live with Parkinson’s. From the very first hour we met, I realized I wasn’t alone in this complicated life.

We met through a wonderful volunteer opportunity, the Parkinson’s Disease Foundation (PDF) Women and PD Initiative. Immediately, I heard stories very similar to mine, many even more complicated — stories of divorce after diagnosis, stories of childbirth and raising children with this disease, stories of fighting to retain careers and professional identities, stories of struggling, like me, to manage the disease well, sometimes with a partner, sometimes without.
Over and over again, from almost everyone, I heard the same refrain — in general, we as women are accustomed to being the caregiver, not the person who needs one. We’re managing our own PD and probably caring for children, parents, spouses, partners, and friends, too.

Our Action Plans for Life With Parkinson’s

I felt understood by the Women and PD Initiative group. During our three days together, we learned from talented medical professionals and scientists that despite the fact that Parkinson’s is slightly more common in men, in fact, women’s lives can be a bit more complicated. Women with Parkinson’s experience unique challenges related to care, research, and support.

Because women tend to be primary caregivers to children or parents, sometimes we do not (or cannot) prioritize our own care. For example, women with Parkinson’s are less likely than men to see a specialist who can provide the best care. Women with Parkinson’s are also less likely to seek out critical preventive care (for non-Parkinson’s conditions) when compared to women in underserved communities or living in poverty. My immediate reaction was, of course! Do we really have time or energy for that mammogram or flu shot? Our lives with PD are already complicated enough!

We weren’t just given this information, we were asked and empowered to do something about it. On the last day together, each of us wrote her own action plan, for how we will take what we learned back into our communities and how we will use our time and talents to improve the lives of other women with Parkinson’s disease. I know that together, we can make an impact.

Because life is complicated for all women, and life with Parkinson’s disease amplifies those complications. But it can be simpler when we support each other.

We hope you’ll join us by visiting the   Women and PD Initiative page today.
Lisa Cone, of Denver, CO, is a retired health care executive and an advocate with the Parkinson’s Disease Foundation Women and PD Initiative.

Follow her on Twitter @LisaNCone.

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