Published Apr 18, 2016
By Lisa Cone,
Special to Everyday A few months ago, I talked about how complicated life can be for a woman with Parkinson’s disease. Of course, life is complicated for all women — a disease like Parkinson’s just amplifies those complications.
So why am I now suggesting that women with complicated lives add something else to their to-do list? Because this April, during Parkinson’s Awareness Month, 5,000 people will be told that they have Parkinson’s, and nearly half will be women. And guess who must stand up for those women? You guessed it: you and me. If someone is going to fight this fight, it has to be us.
Thirty years ago, Aretha Franklin and the Eurythmics sang a song called “Sisters are Doin’ it for Themselves.” (Side note: Can you believe I know women who live with Parkinson’s disease who weren’t even born when that song was written?!) Today, it’s time to apply those lyrics to a new women’s revolution — one in which we radically change how we improve women’s health, and in which we search for treatments and cures through sisterhood. Why? I’ll tell you:
1. Because Women Deserve the Best Parkinson’s Care
As I discussed in my last column, all of us living with Parkinson’s become the CEOs of our own healthcare, managing our doctors and a host of other professionals. Like all CEOs, people with Parkinson’s need a team helping us to manage our business, or in our case, our disease. In Parkinson’s, a key member of that team is the movement disorder specialist (a specialized neurologist), but many women aren’t seeing one. One study estimates that it takes women 61 percent longer than men to see a specialist after disease onset! We have to understand why women aren’t getting the care they need and help them to get it.
2. Because We Can Shed Some Light on Hidden Parkinson’s Symptoms
Women can experience Parkinson’s disease differently from men. For example, we may be more prone to some newly discovered non-motor symptoms, such as depression or anxiety; other symptoms can be completely unique to the individual. Parkinson’s also impacts both men’s and women’s sexuality, so think about it (and you won’t have to think very long): It’s not possible for the impact on each gender to be the same. But when women come together to share our experiences, we can shed light on these symptoms so they can be understood and treated.
3. Because We Are Critical to Future Parkinson’s Drug Development
A recent clinical trial testing a new treatment for Parkinson’s showed promise for men, but not for women! More and more, we understand that women respond differently to drugs and may require different dosages. So we can’t sit idly by and stick to the age-old model that predominantly uses men for research — it’s not good for anyone. We need to participate in research and demand that researchers study gender differences so that we all get the treatment we need.
4. Because Women’s Lives are Better When We Support Each Other
There is strength in numbers, shared experiences, and sisterhood. Studies not involving Parkinson’s have shown that people with strong friendships enjoy healthier and longer lives. For me, more than seven years after my diagnosis, I found a strong network of women with Parkinson’s, and it changed my life. When we connect, we find support and strength.
5. Because We Can Help End Parkinson’s Disease
Until recently, it was assumed that Parkinson’s was the same for men and women. Now we know better. Women have different symptoms, different responses to medications, and different needs in terms of care and support. It’s important to remember that the tide is changing because of women who are advocating — advocating by working with scientists, health professionals, and organizations such as the Parkinson’s Disease Foundation to push for more women-specific information and solutions. As we do so, our advocacy brings us closer to better treatments and a cure for men and women with Parkinson’s.
What can you do this April for the sisterhood of women living with Parkinson’s? Connect. Find an all-women’s support group. Invite a woman with Parkinson’s to lunch. Inform. Share this article. Visit the Parkinson’s Disease Foundation website or Facebook page for information. Advocate. Start a conversation about women’s needs. Participate in clinical trials to ensure we understand women’s bodies. Connect with me and other advocates from the Women and PD Initiative to help further the cause.
Let’s #EndParkinsons so other women can live in a world without it.
Lisa Cone, of Denver, is a retired healthcare executive and an advocate with the Parkinson’s Disease Foundation Women and PD Initiative.
http://www.everydayhealth.com/columns/my-health-story/women-parkinsons-disease/
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