Marlene’s Story, by Marlene Kahan
I was diagnosed with Parkinson’s disease 11 years ago. I had many typical symptoms of PD — tremors, no arm swing when walking, frozen facial features. With much medication, and lots of exercise, these particular symptoms went away with the exception of the tremors. As time went on the medication became less effective and wearing off time was about every hour and a half. My neurologist at Cornell-Weill, Dr. Claire Henchcliffe, strongly suggested that I consider DBS about 3 years ago. Family and friends all got on the DBS bandwagon, but I was stubborn and scared of the possible risks – stroke, bleeding, infection. I was taking high dosages of Stalevo, Azilect, and Mirapex to control my tremors, which caused increased dyskinesias and cognitive disconnects. I seriously began to consider DBS, when my tremors got more consistent and my quality of life was diminishing. I attended a similar seminar at Mt. Sinai about a year and a half ago, and met Dr. Brian Kopell. I spoke with a number of his patients who had undergone DBS surgery and all spoke highly of him and had positive things to say about the surgery, most saying they were sorry they didn‘t do it sooner.
I did a lot more research on DBS, watched many videos of the surgery and patients talking about the benefits after having the surgery. I also spoke with a couple in neurosurgeons in addition to Dr. Kopell who perform the surgeries differently i.e. implanting brain leads and neurostimulators in one surgery as opposed to three surgeries (which is less taxing on the brain).
Dr. Kopell did my first surgery last August, the second about a month later and finally, implanted the neurostimulators in my chest about two weeks after that. All went without a hitch and I just had an overnight stay in the hospital after the brain surgeries and went home the same day after the batteries were implanted.
The surgery has made a huge difference in my life. Eight months after surgery I am tremor free, with little to no dyskinesias. I went from taking meds every hour and a half to every five or six hours. I’m now able to have a meal out without shaking out of my seat. I’m back to exercising, including taking a boxing class.
You do, however, have to manage your expectations. While the surgery has many positive outcomes, it will not cure Parkinsons. You also have to be patient. I was very frustrated that I went through the surgery and had all this hardware in me, then had to wait a month to get turned on, during which time my tremors continued.
My Mt. Sinai neurologist, Dr. Ritesh Ramdhani, has been reminding me how important it is to maintain a positive outlook through the months of adjustments to the neurostimulators and to my drug regimen to attain maximum symptom control.