Women, men, and undergoing DBS surgery for Parkinson’s
A recent study appears to confirm my own observations about their processes
I read an article this year on Parkinson’s News Today about a recent study on how men and women differ in their approaches to the decision to undergo deep brain stimulation (DBS) surgery to treat Parkinson’s disease. Having decided to have DBS surgery in 2019, I found the article informative and surprising.
The central theme was that men and women have different support needs and seek different types of information when deciding to have DBS surgery. You don’t need a clinical trial to know that men and women often have different decision styles — just ask anyone in a relationship with a member of the opposite sex! However, the article confirmed what I’d experienced anecdotally.
I’m lucky to have worked with my neurologist for over 10 years. As part of that relationship, I’ve volunteered to talk with patients one-on-one if they have questions while making the DBS decision and going through the preparation process. I jokingly call it my “Parkinson’s Sherpa service.”
My Sherpa experience with DBS
In my experience, most of the men given my contact information don’t follow up — but sometimes their wives do. And the male patients who call are much more interested in the nuts and bolts. Women tend to ask more about what DBS feels like, observations echoed by the study.
Women have long been known to put off their own healthcare needs to care for others. But I was genuinely shocked by this statistic from the article: “Women comprise far fewer than one-third of patients — 23% to 30% — choosing the surgery, even though the disease affects both sexes equally.”
Why are so fewer women getting this life-changing surgery? Women often think of themselves as the caregivers and don’t want to be a burden. But it’s like the safety briefing on an airplane with the oxygen masks: Taking care of yourself in the short term will make life easier in the long term.
I think representation matters in this and all things. With fewer women getting the surgery, there are fewer examples to turn to. Looking back, I didn’t speak to a single woman who’d had the surgery when I was planning my own. I hope in some way, with my outspokenness about having Parkinson’s and sharing my surgery story, I can be that representation for other women — and men — out there suffering.
The article also mentioned that women lacked support when making their decision before and after surgery. I’m blessed with a great partner, Ted, who is also my caregiver. He encouraged me to ask about DBS and research the risks and benefits, and he also bought me soft hats to keep my shaved head warm after the procedure. Finding such support before and after DBS surgery is critical.
So is getting aftercare from a doctor with lots of DBS programming experience. I still see my neurologist three or four times a year for adjustments to my voltage. I love saying things like “adjusting my voltage” and calling myself the “bionic woman.”
I’m a huge advocate for DBS surgery, but I also acknowledge that I’ve had exceptionally positive results. Like, atypically great results. I take about 80% less medication than I did six years ago. I sleep better. I walk better. My mind is clearer. When I share my story with others, I try to set realistic expectations. Not everyone will feel 10 times better after the surgery, but what if it makes you feel 10% better? Would that be worth it?
My decision to get DBS to treat my early-onset Parkinson’s disease was life-changing in all the best ways for me and my family. However, DBS surgery is a deeply personal decision, and it does come with risks. It’s not a cure. Patients must consider many medical, physical, and emotional criteria when making the decision. But don’t let fear hold you back. Woman or man, you deserve the best possible quality of life.
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.
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