Deep Brain Stimulation and Parkinson’s From Decision-Making to Daily Life with DBS | Page 48

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Deep Brain Stimulation and Parkinson’ s
We asked four loved ones of people who had DBS to share their experiences and tips for other care partners who accompany their loved ones on the DBS journey. Here, in their own words, are open and honest answers about what they wish they had known, done differently and more.
Rebecca Gifford, wife of Larry Gifford. Larry had DBS in 2023, six years after diagnosis, in Vancouver, Canada.
Kelsey Lewis, daughter of Preston Lewis. Preston had DBS in 2015, eight years after diagnosis, in Lexington, Kentucky.
Mike Rajkovic, husband of Donna Rajkovic. Donna had DBS in 2020, eight years after diagnosis, in Cleveland, Ohio. Due to complications, Donna had a complete revision in 2023.
Constantin Mitides,( right) husband of Bernard Whitman. Bernard had DBS in 2023, five years after diagnosis, in New York, New York. Due to an infection a few months after the procedure, his left brain lead was removed and replaced.
What do you wish you had known about DBS?
Constantin: I wish we had better clarification about the differences in DBS’ s impact on gait freezing versus tremor.
Kelsey: More about the different kinds of DBS, especially with regard to rechargeable vs. nonrechargeable batteries. Also, if the DBS device is compatible with future technologies. My dad’ s DBS battery has to be charged daily for 45 minutes, which means he must be still for 45 consecutive minutes each day. We know others who have different rechargeable devices that only have to be charged every two weeks.
Rebecca: Larry experienced a very long“ honeymoon period” of about 10 weeks after DBS, when his symptoms were markedly decreased. While this was a freeing and relieving time, it meant the device was turned on and programming began many weeks later than anticipated and we had to adjust our life a bit. As a care partner, it was a lesson in patience and a reminder of the uncertainty we live in.
Mike: Everything. No matter how much research you do, the amount of information that comes to light after several years of going through the process can be staggering. Nobody can predict some of these things— like DBS may solve some issues like dyskinesia and sleep problems, but