I remember clearly the night in 2002, about a year before my official diagnosis. I stood in the nursery of the hospital where I worked and extended my left hand and said to a coworker,“look at my hand, it’s shaking?” My coworker said, “hey you must have Parkinson’s!” Her response may seem insensitive but I didn’t take it that way…I was only 27 years old and I immediately swept that thought out of my mind. Since I responded well to PD medication, my symptoms were under control for a number of years. Initially the medication worked well but I started to wear off more quickly and I developed frequent dyskinesia.
In January 2007 I had deep brain stimulation. The results were good for symptoms on my left side but my right side only seemed to get worse. With worsening handwriting and tremor I couldn’t concentrate on anything for 7 years.
In November of 2013, while driving to my appointment, my friend Ann said, “You should go see Sierra Farris.” I thought no way! “She’s in Colorado and what can she do that my doctor isn’t doing?” We talked more about my situation and I thought what do I have to lose. I decided to go to Denver. Ann had the hope that I had lost. So the planning began. If you want something you have to put in some effort into it. Gathering medical records, filling out forms and getting plane tickets, hotel, and transportation. I was thinking to myself if this works, I’m definitely asking my friend Robbin to go to Denver.
The journey to Denver in November of 2013 started out as just one trip. My walking (gait) and leg dragging had gotten so bad I could not walk with out an AFO (ankle/foot/orthotic). An AFO is a hard plastic brace that was used to stabilize my right ankle that had caused a sore on the bottom of my foot. My ankle also became sore since my ankle pushed out ward -it was all very painful. I was in physical therapy but nothing seemed to help. I really felt cheated by my DBS but grateful at the same time because DBS had been helpful for my left side.
The first morning of the troubleshooting appointment, I walked into the Movement & Neuroperformance Center with my AFO on my right foot. Sierra asked me to take off the AFO and I could barely bare weight on the right leg. We spend a few hours programming and when it was over I asked “do I have to wear this AFO?” I left the clinic that day without the AFO and able to walk out of the building on my own two feet. Sierra did some fantastic re programming. That day I found my hope. And it only got better from there.
Before I left home, my little girl told me I would be walking when I came home. The first thing I did when we got back to the hotel was FaceTime with my children and show them my new walk. They were overjoyed. Later that week after several evaluations, Dr. Giroux and Sierra told me the location of my left DBS brain lead could be improved and revision surgery could be beneficial for symptoms on my right side. We learned that a lot of the symptoms on my right side were actually symptoms of over-stimulation which can mimic Parkinson’s progression.
Fast forward to January 2014. I’m back to the center to have deep brain revision surgery. So to shorten up this story, my surgery went awesome! I am so grateful for my dear friend Ann for her gentle push to go to Denver. The whole team of experts were great and I truly felt as an active participant. I am currently pretty much symptom free. I have finally been able to reduce my medications.
Living with Parkinson’s for 10 years has been like a huge giant grabbing me by my ankles, hanging me upside down and slowly shaking the life out of me. Shaking everything to my core. But I have the victory now because the giant was forced to let go when I decided to have revision. I am living a new life- my life. I’m thankful to God because everyday is a gift. My message to anyone that reads my story is never give up and keep looking for answers when you know there must be something more. Knowledge is power. ~Jessica
Editorial: Jessica had the courage and determination to seek a second opinion and thankfully, we turned around her experience with DBS. In some cases, the stimulation just needs an adjustment and in other less common cases, the DBS probe must be moved to gain the most DBS has to offer. If DBS fails a patient, there is always a reason. DBS should always work, should work without stimulation side effects and we know DBS will continue to work for decades. Jessica is absolutely correct above that over-stimulation can mimic symptoms of disease progression or some people may notice new symptoms that are reversible with a change in stimulation settings. We should remember that Parkinson’s progresses slowly before and after DBS. Seeking help from a highly experienced DBS expert team is encouraged if DBS isn’t working as expected, especially if revision surgery is planned. (Learn more about troubleshooting.)