by Wil Sorois, Scarborough, ME
member of the Maine Parkinson community
In early 1994, I developed a slight tremor in the little finger of my right hand. After visiting my primary care doctor and at his suggestion, I went to a neurologist who administered several basic tests and then rendered his diagnosis. Little did I know that his diagnosis would change my life forever. He simply said, "Mr. Sirois, I have some good news and some bad news. The good news is you do not have a brain tumor–the bad news is you do have Parkinson's disease."
Not willing to readily accept this diagnosis, I made an appointment with another neurologist, then took a trip to Boston to see a noted neurologist and PD specialist. Each visit concluded with "diagnosis confirmed."
I went back to my neurologist and we began my treatment, which consisted largely of a couple of Eldyprel tablets per day. Over the last twelve years, my medicines changed dramatically; I occasionally attended local support group meetings, not because I'm a great joiner but I felt there might be information to be had when they presented interesting speakers. I learned everything I could related to Parkinson's. Additionally, my wife also got involved by raising money for a local PD information center. She organized a home tour in the Scarborough area entitled, "Homes for Hope" which she chaired for two years. She also served on the board of the local APDA chapter, Maine Parkinson Society.
Ten years into my treatment, I began to hear about "DBS," a new method of treating Parkinson's surgically. Two years later… my neurologist suggested that it might be a good time for me to explore the potential of this surgical treatment for myself. Over the next several months, we interviewed doctors, hospital staff and patients and without exception, the reaction to DBS was positive. In the conversations we had with various people we interviewed, comments such as those that follow were heard:
"A 68 year-old man from Rhode Island had the surgery about a year ago. He currently takes no medication and is back to work as a college professor. He's away from home Monday through Thursday and functions well. His speech is slightly slurred and his voice is soft but both he and his wife feel that DBS was nothing short of a miracle."
"A 61 year-old man was diagnosed eleven years ago and had the DBS surgery about one year ago. He is currently taking no medication. His voice was good and he said he is currently putting a new roof on a building he owns. He stated that before his surgery, he could not drive his car or even feed himself. His wife also had to clothe him. He is now able to do all of these things. He does have a little trouble writing."
"A 65 year-old man had DBS surgery 2½ years ago. He takes a small amount of medicine daily and is very pleased with his outcome."
Phase 1
We arrived at the hospital …I was wheeled into the pre-op area…taken to the Operating Room. A plethora of doctors waited for me and; yes, I was sedated. The next thing I remember was my wife coming to my side in the Recovery Room. I had a splitting headache and I was sore from the waist up. I had two holes drilled in the top of my head, wires over my left ear fed down under my skin to a stimulator which was implanted in my left chest. Well sedated, I slept until the next morning. I was discharged later that day and went home to recuperate for a week before Phase 2 surgery.
Phase 2
The surgery lasted approximately five hours. The next thing I remember is my wife meeting me in my room…The doctor came in later and told me that the surgery had been very successful. After Phase I surgery, I remained in the hospital for one night and want home the next day. I had a mild headache for a few days that was helped with extra strength Tylenol. After Phase II surgery, I remained in the hospital for two nights.
Since the Phase II surgery, I have taken NO PD MEDS. I've had very limited PD symptoms!
As yet, the fine-tuning of the stimulator is still being adjusted. I currently have problems with twitching in my legs, forgetfulness and feel quite weak and tired. However we hope that this will change with time and tuning as we were told that he takes 2-3 months to recuperate from DBS surgery.
Editor's Note: A special thanks to Wil & Joyce Sirois for sharing their journey. We hope to receive an update from Wil next Fall, after he has had time to adjust to his new life!
