The choice of whether or not to have DBS is a very personal decision. Two members of a DBS Support Group facilitated by the Movement Disorders Clinic at Deer Lodge Centre, Winnipeg share their experiences:
I had DBS surgery six years ago. My old pal Parkinson’s was taking over my life. I had severe cramping on my left side, left leg and foot, to the point that my toes turned under and I ripped off a toenail. The only way I could find relief was to lie flat on the floor for hours at time. The cramping would subside but return when I stood up.
Having the surgery has been a godsend. It has created some freedom for me. I remember coming out of the surgery hungry and asking for food. I was there shovelling food into my mouth when the surgeon came in and asked, “What are you doing?” I said, “I’m just having some supper.” He said, “No, you’re using your right hand!” Before then, I couldn’t balance a pea on a fork. So right from that moment, I knew good things were happening.
I would still experience the occasional cramp but I can adjust the stimulator to give me enough power to take it away. As a past athlete, I’m in tune with my body, so I can be a bit fussy. It took about 18 months to get the stimulator settings to where I wanted them to be.
Initially, I cut my Parkinson’s medication by about 70%. Over the six-year span, I have increased the dose, working closely with my neurologist and the nurse.
Recently, my stimulator had a total re-set, where everything was shut off and started from scratch, as if I was a new patient. The new settings have worked incredibly well for me. At the side of my house, there is a dog kennel that needed to be dismantled. It’s been there for a while and I didn’t try to take it down before because I thought it would take forever. However, with my new DBS settings in place, I did it in 30 minutes.
Sometimes, I wonder if perhaps we wait too long to administer DBS. I wonder if we shouldn’t do it earlier. I guess the brain is pretty complex, so how do you know when it is the right time? I think instead of waiting until someone is almost a burden to society maybe we could administer it in time so people can get in an extra 10 years of purposeful life.
For the first three years after my Parkinson’s diagnosis in 2001, I was able to continue working in maintenance instrument and controls at the University of Manitoba. As the disease progressed, I enquired about short-term disability in 2003. The occupational nurse and my family doctor helped me with the process. After a year, I went on long-term disability.
Over the next few years, as my medication dosages kept increasing, my neurologist, Dr. Hobson, suggested I consider DBS surgery. It seemed like the answer. Perhaps it would give me more quality time to spend with my family and enjoy my grandchildren. It would also allow me to decrease my medications and help ease the side-effects.
For the first three weeks after the surgery, in 2007, I was so weak, I could barely lift a box. My wife Carole and I were in the process of moving into a ground-floor apartment but I wasn’t supposed to do any bending or heavy lifting. As time progressed, I felt more capable of doing things I had done before. I was also able to cut my medication by about half.
Since the surgery, my tremor is virtually gone, except, for instance, if I have to hold a telephone for a while, so I use a headset instead. I think my voice has been affected a bit, so I do vocal exercises and attend a once-a-month class for Lee Silverman Voice Treatment graduates. One area where DBS hasn’t helped is with dizziness.
Before the surgery, I was more compulsive. Now, I’m more hesitant and not as bold but I think that could be part of the Parkinson’s itself. Because the brain is affected by the disease, some brain processes can become difficult. I experience some memory and mood problems. Relaxation and exercise are beneficial but finding the motivation can be difficult at times. That’s when I need help. My wife Carole is very helpful. We can also talk to the doctor.
Recently, I had my three-year post-surgery assessment. It went well.
I am thankful to God for my healthcare team and the fact that I was able to have DBS surgery which has given me and my family a better quality of life and enabled me to do things I would not otherwise have been able to do.