Alex Baker's Parkinson's Disease and DBS Story
Living with Parkinson’s Disease:
The tremor was getting worse and making work difficult. Sleeping became difficult. My toes started curling underneath my right foot. Operation results on my toes didn't go well and it was becoming painful just to walk. Then came chronic low back pain which was treated with Botox shots into my low back, legs, and the bottom of my feet. Then dystonia issues. More drugs were prescribed which were messing with my short term memory, and I started making mistakes at work that could have become serious. The drugs were also causing some minor hallucinations, and making me irritable and ill for a couple hours after taking them.
I had told my boss right after being diagnosed with Parkinson’s Disease that I would let him know when the illness started to affect my work. I made that decision after making another serious mistake at work in November 2015. I was the lead electrician on an offshore oil and gas platform and while switching a large electrical load for weekly emergency generators testing, I did not perform the right sequence. I had performed this procedure hundreds of times without error. My doctor at the time did not tell me that one of my medications affects short term memory. I had to retire early at the age of 60.
My favorite pass time activity without question is surfing. I have been surfing since I was ten-year-old, about 55 years now. Surfing is not just a sport to me nor just great exercise. It is exciting indeed but it's more of a release for me. It is almost spiritual, a sort of stress relief or reset button from the pressures of everyday life. Now Parkinson's was threatening to take away surfing and that would be devastating to me.
There are certainly risks associated with every operation and I had already considered ultrasound as it seemed less invasive, but the procedure can't be reversed and Deep Brain Stimulation (DBS) is reversible.
I would not just have such an operation anywhere. If you have ever been to any of the Stanford neurology and neurosurgery clinics you know that you are among the very best physicians and nurses on the planet.
After a painful round of Botox into my low back, legs, and the bottom of the arch on my right foot, my doctor looked me in the eye and said, "You know Alex, you can make this discomfort all go away," I knew she was talking DBS once more. She asked me if I would be willing to go to Stanford and meet Dr. Casey Halpern and just talk with him about it. She told me he was a wonderful doctor and she was right. I felt very comfortable with him so after we spoke about the procedure I decided to have the surgery.
People with Parkinson's should know that not everyone is a candidate for DBS. They put me through extensive testing to make sure I did not have dementia or other neurological issues. But if you are still somewhat active or haven't had the disease for too long and your symptoms are getting the better of you, or you suffer with dystonia and chronic pain, you owe it to yourself to look into DBS. I would not just have such an operation anywhere. If you have ever been to any of the Stanford neurology and neurosurgery clinics you know that you are among the very best physicians and nurses on the planet.
Life After Deep Brain Stimulation:
Now when I have tremor it is minor and temporary. People I've met since the DBS surgery don’t realize I have Parkinson’s unless I tell them. Prior to DBS I was afraid to pick up a glass of wine with my right hand for fear of spilling it, but now that fear is gone – no more spills! After the surgery, I was able to reduce the PD drugs by more than half, I was able to stop using drugs that adversely affected my short term memory, my right arm swings now with my gait normally when I walk - as opposed to just hanging with no movement as it did before the surgery - my toes stopped trying to curl, my hand writing is no longer small and illegible, and I am able to write normally now.
I have talked with many PD patients considering DBS and I tell them all that if they are candidates for DBS that they should seriously consider talking with the great staff at Stanford. It's really about the quality of life. The entire Stanford team and Dr. Halpern gave me back my dignity and quality of life! Best of all, I’m back to surfing!
Written by: Alex Baker