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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Leena Graham
Would she able able to talk iti a DBS candidate? Having a hard time deciding and would love to talk to someone who has gone through it.
Kevin Breen
Thanks for this great piece of writing Mollie…I know that DBS can work for the motor symptoms of PD, but will it also work for the non motor symptoms? I have really messed up senses of taste and smell, which is affecting my appetite so much so, that I’ve lost 25 lbs in 6 months..I still taste and smell, but everything tastes and smells toxic! Even BACON! My doctors have tried changing my medications to no avail..
Rick
Thanks for this motivational article and especially for your positivity! I am scheduled to get a DBS in 2 months and I can’t wait to reclaim my life! I know it’s not a cure but after being beaten up by this monster for 8 years, I’m looking forward to winning a few rounds (or more!).
Jane Schore
thanks for sharing your experience. though i am older than you i think my next visit to my neurologist will be conversation about dbs. i dont have tremors your improvement on your sleep makes this a game changer for me
love the comments, thus far!
Nels Johnson
Thank very much for your informative posting. I was diagnosed in 2017 at age 70 and had DBS surgery 2.5 years ago
which completely changed my life (for the better). Your observations make sense given the overall gender breakdown of my local PD support group.
Sheryl Francik
We would love to hear what symptoms got better with a before/after surgery comparison. We would also be interested to learn what exactly is done during DBS, how long it takes to recover, how invasive it was, how you got such great results, and all the little details. Also, how old were you when you were diagnosed with early-onset PD, and how many years later did you get DBS?
Rick newman
My wife had DBS surgery almost 20 yrs ago now, diagnosed almost 32yrs ago. She was 44yrs old and we were still raising 3 kids. It was life changing and life extending. She is still doing ok and she gets big adjustments from her neurologist and smaller adjustment from me.. well worth the operation. I have 3 more people in the support group I run that have now also received DBS
Gregg Daniels
I also got DBS in 2019 having PD for almost 8 years at the time. I was 62 when diagnosed and am now 7f4. By the way I am a Male. The surgery also allowed me to reduce my medication about 75% and it remains at that level although the stimulation has been increased some. My college background (many years ago) was neuroscience and I continue to take online related courses from MIT, CalTech, and others. I exercise 5 to 6 days a week doing cardio, strength, balance training. I also mountain bike, hike and am still riding my dirt bike and street motorcycles. I have noticed learning and mainly remembering what I recently learned is a bit more difficult than it was in college! Also, don't ride as fast as I used to either but still keeping up with the guys 15 years younger. I can see some progression but overall very pleased with the DBS.
Francisco Manuel Gonçalves
Diagnostico de parkinsson em Janeiro 2014. Submetido a cirurgia DBS em Novembro de 2024. Durante este tempo o neurologista foi sempre o mesmo.Vivo sózinho desde 2014. Sempre fui muito resiliente e raramente aceitava apoio de qualquer pessoa. No entanto dei algumas quedas, mas nada de especial ao ponto de ter de ficar em casa. Gostava bem menos do olhar das pessoas, nas minhas caminhadas, do afastamento dos amigos e alguns familiares. Resisti. Nunca diagnosticaram ,depressão, ansiedade etc. Talvez tenha sido esta minha forma de lidar com a doença, o motivo para a cirurgia DBS, alterar para muito mrlhor a minha nova vida.Renasci para a vida. Continuo a viver sózinho. Já conduzo.Espero e concerteza vou novamente produzir, maças, peras, figos etc. Li muito durante estes 11 anos, as pessoas opinavam, sem ser pedido. Vai para um lar, tens de pensar em ti etc etc .Seguia apenas os conselhos do meu neurologista e a minha intuição. Somos todos finitos, mas uma coisa me parece certa, vou morrer com parkinsson, mas não de parkinsson. Se me permitem um conselho, direi não fiquem no sofá, muito menos na cama. Aproveitem o sol que em breve teremos com fartura. Sol dá Deus de borla. Disfrutem. Tudo de bom para os doentes e cuidadores de Parkinsson, bem como para aqueles que na sua vida profissinal se dedicam a encontrar soluções, beneficiando aqueles que sofrem.
Respeitosamente.