“ There is a light at the end of the tunnel.”
29
After Surgery
Jessica R.
I was 24 when I began to feel weakness in my left hand doing easy tasks like typing and applying make-up; the early-onset Parkinson’ s diagnosis followed six months later. By the time I began thinking about DBS I was taking medication almost every two to three hours and living pill-topill. I had to constantly think about where I could discreetly store my pills and was always trying to time them best before an evening out. I decided to have DBS when I was 31 years old because the bad days started to outnumber the good and after a few weeks of contemplating, I knew DBS surgery was the next step in my journey.
My procedure went as smoothly as it could— no infections or other problems— and the recovery was challenging but to be expected with any brain surgery. As a young woman, I have my vanity, and having half of my head shaved affected my confidence more than I had imagined it would. I went through the scarf phase, followed by hats and headbands and even beautiful wigs while patiently waiting for my hair to return.
Regardless of my hair accessory, I am grateful every day for this surgery and how far I have come— I have not taken levodopa since the day they turned on the stimulation, which is incredible and extremely rare! Most importantly, my tremors and all the dyskinesia have gone away, and I recognize my life again.
I have learned firsthand how helpful it is to have a great relationship with everyone in your care team— your neurologist, the surgical team, your own doctor— because they’ ll work with you and support you. I am also grateful for my incredible family and friends and feel very fortunate for my support system.
For Jessica R., diagnosed at 24 with early-onset Parkinson’ s, DBS was a clear step on her journey with the disease.
I assumed life after DBS would mean backless heels, taking on more at work and seeing my handwriting improve. While the backless heels have yet to happen, I recently got promoted at work and take notes by hand every single day.
DBS is an individualized experience, and everyone has a different reaction, but if your doctor thinks that you’ re a good candidate, I would trust them. There is a light at the end of the tunnel.