My DBS (Deep Brain Stimulation) surgery was on January 22, 2024. In just over 4 months, I’ve had an amazing recovery.
Initially, after the surgery, I went through a 2 week period called the “honeymoon” stage. This is the period of time when my Parkinson’s symptoms disappeared due to the swelling of my brain from the surgery. In fact, I was feeling so good, I attended my daughter-in-law’s baby shower 5 days after the surgery. My Parkinson’s symptoms returned with a vengenace and it was back to my meds and strict eating schedule to manage my life.
However, I was determined to get back into moving my body as soon as possible. The literature that the DBS clinic gave me said that I was not to lift more than 5lbs and I was not to resume exercise for 12 weeks after my surgery. I understood these precautions but I also knew these guidelines were written for people who were generally sedentary and who were not in the physical condition that I was prior to my surgery.
I believe movement is integral for our bodies and our health. I started doing some gentle stretching/yoga within 1 week of my surgery. Within 2 weeks of my surgery, I was doing short Qui Gong routines from YouTube. I resumed my online Small Group Training classes within 4 weeks of my surgery using light weights and modifying exercises as needed. I was back seeing my own personal trainer and doing modified workouts by March 4th. I believe getting back into movement and exercise was one of the reasons my surgery has been so successful.
The adjustments to my DBS stimulator (the battery pack implanted in my chest that controls that electrical current that runs to my brain) started 5 weeks after my surgery. There were 4 adjustment appointments scheduled, 2 weeks apart. At the first appointment, the technician turned on my stimulator. I was not to take any of my Parkinson’s meds from midnight the night before my adjustment appointments. This enabled the doctors and technician’s to see what my Parksinson’s symptoms were really like when not medicated. As you can imagine, this is not good. For those appointments, I was back in my wheelchair as walking was out of the question.
It’s a really weird feeling to have someone controlling your body. With the movement of a dial on an i-phone, the technician could make my toes curl, my fingers point or stop my head from shaking. All of this and more happened during those appointments. The goal was to find the “sweet spot” where just the right amount of electrical current was travelling to my brain to control my symptoms.
As the stimulator was controlling more of my Parkinson’s symptoms, I could reduce the amount of drugs that I was taking. I am now down from taking 2.5 pills every 3 hours to 3 pills in total, taken at specific times during my day. The doctors explained that they cannot take me off my meds entirely because the synthetic dopamine that I’m taking also controls my mood and prevents me from experiencing anxiety, apathy or depression. (Medical note: our bodies produce dopamine which controls all our motor functions and many non-motor functions like sleep, mood, etc. People with Parkinson’s lose the ability to produce dopamine over time).
Someone told me before my DBS surgery that it would be “life changing” and it has been. It’s almost hard to describe (without tears coming to my eyes) how much my quality of life has improved in just over 4 months. I have started running again (slowly, but I’m running!), I can now socialize in the evening (that has been impossible since last August), I can drive (I gave up driving in early December), I can eat normal meals (I could not have more than 5 grams of protein for breakfast and lunch and I could only eat at specific times during the day), I’m sleeping soundly every night (sleep was elusive before my surgery), I travelled alone out to Alberta a few weeks ago to meet my newest grandson (travel last year was impossible) and I’m babysitting my grandchildren again (I have not been able to do this for over a year).
Life is good. I’m not 100% however, I know I never will be. But for now I have a life and I’m going to live it to the fullest in gratitude.
Yours in health,
Kim