It’s been a long time since I’ve written anything as the last 2 months have been tied up with preparations for my surgery. I’m happy to tell you that the surgery went well; and, on last Thursday, the neurologist turned on my stimulator. Wow, what an experience. I was told to hold my medications Wednesday afternoon and Thursday. I did as instructed and was miserable.
Thursday, Renee had to put me in a wheelchair and roll me into the office. My Parkinson’s was in full bloom, and I couldn’t walk. The neurologist then turned on my DBS and I was able to stand and walk better than I have walked in years. It was truly miraculous, and I want to thank everyone for their prayers.
We’ve reduced my meds and I continue to do well. I still have Parkinson’s but my motor skills are much improved. I’ve only frozen twice since turning on the DBS and only napped 3 times yesterday. At this point, I’ll see my neurologist every 2-3 weeks to fine tune the stimulator. Like all interventions, the DBS can cause side effects and one of the more bothersome side effects are dyskinesias (awkward automatic body movements). Last night I went on an eating binge which hopefully is not related to my DBS. I’m already overweight and have to slim down.
The lessons I want you to learn from my experience are the following. My surgeon and neurologist warned me, on multiple occasions, stating that DBS was indicated for tremor, NOT GAIT DISTURBANCES. At the same time, they gave me their warning (informed consent): they informed me that if the gait disturbance improved with medication, it should improve with DBS. Giving “informed consent” is every physician’s obligation, even when it scares a patient out of doing a necessary procedure. Having a trusted family physician is critical when you are getting mixed messages from your specialists. I understood the reasons behind the mixed messages and made the right choice.
The second lesson is that being scared of a medical procedure is both understandable and appropriate. This surgery was scary! I was awake throughout the entire procedure and it was intense. Had I not had the surgery due to fear, I would have spent my final years in that wheelchair. While I still have a progressive neurologic disease, my future is brighter. I’ve been jealous of people who can walk unencumbered by illness. Hopefully, we can balance my medications and my DBS so that I can walk and return to Rock Steady.
