41
“ 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.”