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“ I lost two years feeling sorry for myself .”
Life with DBS
Connie Jones
I had my first DBS procedure in 2014 . Unfortunately , I had to have everything removed a year later when I developed an infection . But the replacement surgery just didn ’ t work for me , and it turned out the lead was incorrectly placed . It took a year to find a new neurosurgeon . It wasn ’ t a fun time at all .
Would I do it again ? Absolutely ! With any surgery there can be complications , but DBS has made so much possible . Playing with my grandchildren trumps all of the problems I had .
But I ’ ll admit it . When I got my diagnosis in 2010 , I thought it was the beginning of the end . I hid my shaking right hand in my pocket for two years . I was in a very dark place . But it was a local “ Fox Trot ” fundraiser in 2012 that changed everything . One day , my husband called in the cavalry . “ You need to go on Facebook and say you have Parkinson ’ s , and ask everyone to support your Fox Trot team ,” he said .
My friend George organized the Fox Trot race , and that ’ s where we met . He wanted to create a support group and asked me if I ’ d help him start one . I was in ! The Charleston ( West Virginia ) Parkinson ’ s Support Group began with three or four members , and it grew to 20 . I ’ d bring donuts to every meeting . We moved to a bigger space and now we have 140 members . Getting involved the way I did and feeling supported by others with Parkinson ’ s grew my confidence . And then my son — who had just proposed to his girlfriend — convinced me . “ I want you there for the mother-son dance ,” he told me . I decided to go ahead with DBS . And when I had the complications , everyone was there for me .
Connie Jones , with Parkinson ' s advocate and friend George Manahan , decided to have DBS after getting support from her family and friends .
I lost two years feeling sorry for myself . I ’ m so fortunate : DBS has been wonderful for me . I tell people with Parkinson ’ s , “ If you ’ re just going to crawl into a closet as I did the first couple of years , you ’ re not going to meet these wonderful people .”