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