“Finding information about being a woman with Parkinson’s was challenging”
Women and Parkinson's
Author: Kathleen ReardonPublished: 5 November 2020
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Ireland-based author and academic Kathleen Reardon discusses the challenges of finding resources focusing on women and Parkinson’s – and shares her advice on making sure you’re heard by your doctor
I was diagnosed with Parkinson’s in 2002. I’d noticed something not quite right at the age of 49 but it took over two years of disagreements about what was wrong with me – doctors disagreed, mainly because I had mostly non-motor symptoms at first. I felt adrift. Then a doctor was visiting at the place where I had an appointment. The visiting doctor quietly walked up to me after I was told it wasn’t Parkinson’s and privately said, “Come see me. It looks like Parkinson’s to me”.
He took a sincere interest and insisted that I cease teaching at my university despite my protestations. “You’ve done an outstanding job of that for over 25 years,” he said emphatically. “You have other interests. Do those now or we’ll find ourselves having to treat you with far more medication. You don’t want that.” It was difficult to take that advice as I love teaching, but I trusted him. He was outstanding.
I struggled with how much to tell my children, especially since I didn’t know how Parkinson’s would affect me. My approach was to keep doing things as I’d always done them, including playing basketball with my children, traveling with my family, attending their activities and more until each of those things became too difficult. Fortunately, the difficulties didn’t come all at once and as they got older much of what we did together didn’t require physical endurance.
Initially, being a woman with Parkinson’s, especially with young children, I felt rather isolated. It was difficult to find women with Parkinson’s until I began joining Parkinson’s groups and exercise programmes – what a positive difference that made.
Kathleen Reardon. (Image credit: Chris O’Dell, Artists On The Mizen)
“Women are heard differently in medical settings”
I’m sure men experience a sense of feeling less attractive, but most cultures place a lot of emphasis on female beauty. Parkinson’s is largely a disease of older people and so it’s easy to feel older before you really are. It’s a rare spouse or partner who will say, “Yes, I find you less attractive,” but it would have helped to be able to talk to women about that.
Facial masking can steal some of your sparkle and expressions can be misinterpreted. I found that a challenge at times even though my masking has been relatively minimal. From earliest childhood, women are taught (by their parents, teachers, mentors, peers, the media and countless other influencers) that it’s important to smile; girls and women, more than boys and men, are expected to be and appear amicable, sensitive and empathic. When our facial expressions don’t meet those societal expectations, people may take offense or withdraw as friends without ever even realising that they are reacting to something entirely out of our control. When it comes to doctors, they can assume that a woman with Parkinson’s disease is depressed because expectations of amicable expression are greater for women.
I think it’s important for women to insist that their medical practitioners remove the word “complained” from their records. Doctors are often taught to write, “The patient complained of x, y or z”. I explain to my doctors that the word “complain” has more significant implications for women. Research indicates that women are heard differently in medical settings. Doctors may inadvertently tune out if they consider what a female patient is saying as a complaint. While my doctors have smiled when I’ve mentioned this, they’ve changed their approach and in two cases taught their students to do the same. They now write, “The patient explained, described, discussed or emphasised”. If nothing else, it raises their awareness to an unconscious bias.
As women with Parkinson’s, we need to listen to ourselves, and observe whether those around us, including our doctors, are hearing and heeding what we’re saying. We must work on maintaining and strengthening the volume of our voices – work with a speech pathologist or seek out one of the many videos or other tools designed for this. It is important, too, to prioritise what we have to say, and emphasise issues and items that are high on our list.
Kathleen with her husband Chris, on Mizen Peninsula, West Cork, Ireland.
“You’re not alone”
I was a preventive medicine researcher, so finding sources about Parkinson’s disease was not difficult. However, finding information about being a woman with Parkinson’s was challenging. While it is wonderful to have celebrities help us raise awareness about Parkinson’s, for a long time there was too much emphasis on that. It’s difficult to identify with people, almost always men, who have extensive support due to their celebrity status. I certainly don’t recommend excluding them, but merely realising that the experiences of celebrities can be different – perhaps even harder in some ways as they’re very visible.
For those issues that are not clinical, including those regarding gender, other female Parkinson’s disease patients tend to be the best sources. Sharing provides understanding and empathy. It often leads to a sense that you’re not alone.
Finding resources focusing on women and Parkinson’s is still a challenge. Social media outlets have provided more opportunities to hear from and learn from women. If we had more opportunities for interactive discussions about issues particularly relevant to women, that would be useful.
Being heard by doctors
Kathleen Reardon shares emphatic phrases to use when communicating with healthcare professionals.
“This is key” – This is a good way to introduce a symptom that has become problematic.
“That was important for me to tell you, but this is also critical” –This will cue a doctor to listen more carefully.
“This is what I really want you to hear” – If you’ve already asked a question or delivered a message but the doctor is not providing the information you need in response, use this phrase before repeating or rephrasing as concisely and accurately as you can.
“I’d like to repeat what you told me earlier because we skimmed over it” – Doctors may be pressed for time, but a patient should never agree to finish a visit without a thorough understanding of what has been discussed.
If it makes you feel better, lead with the comment: “I’m going to be more direct for a few moments to be sure I’ve made clear what matters most to me.” Then use one of the phrases above, or one of your own, that clearly articulates your concerns. You can thank the doctor first for their attentiveness and concern before articulating your needs.
Need to know
Kathleen Reardon was a professor at the University of Southern California, and a visiting professor at Stanford University, US, Trinity College Dublin and University College Dublin, Ireland, and a distinguished research scholar at the Irish Management Institute, Ireland.
She moved to Ireland shortly after her diagnosis with Parkinson’s. There, she began to paint and has since written two crime mystery novels, ‘Shadow Campus’ and the sequel ‘Damned If She Does’. The third book in the trilogy will take place in West Cork, Ireland. She has also published ten nonfiction books on communication, negotiation and politics at work.
It is estimated that three million women worldwide are living with Parkinson’s – yet their specific needs and experiences are often ignored, leading to disparities in diagnosis, treatment and medication. Our campaign shares the little-heard stories of women with the condition to find out how their lives are being affected by a shocking data gap when it comes to women and Parkinson’s. This is just the start.
We want to raise awareness of women’s experience of the condition within the medical profession, so that women’s symptoms are taken seriously.
We think more research is needed into the impact of Parkinson’s on women, so that they can benefit from tailored medication and treatment.
We want to explore ways to offer better support for those women managing the condition alongside caring responsibilities.
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