By LINDON DODD
"My happiness grows in direct proportion to my acceptance and in inverse proportions to my expectations.” — Michael J. Fox
Most of us take a simple act of handwriting for granted. We take our health for granted until we are sick. We take life for granted until someone dies.
Lois Burnett one day began to have trouble with a simple act that she had been able to accomplish almost every day of her life since she was a young child. One day she began to have trouble with her handwriting. No matter how she tried it seemed to come out smaller than normal.
A simple act of trying to write a sentence was frustrating. It went on for about six months before she felt a tremor. She was 53 years old.
Parkinson’s disease is usually thought of as being an old person’s disease. In fact, most people don’t get Parkinson’s until their seventh decade of life. Lois Burnett beat the odds.
I used the Michael J. Fox quote above because I have said about him that the best thing that can happen to someone with a disease is for somebody everybody loves to get it. I would suggest that after his diagnosis, more research and more research dollars poured in to finding a treatment and a cure. Everybody who knows Lois Burnett loves her. If you knew her you would repeat an old cliché’ about how bad things can happen to good people.
Well into mid-life she decided to be a healer. She had raised seven kids and decided to go back to school and eventually became a nurse practitioner for the medical clinics in Charlestown and Henryville. Over the years, I have had many people I knew and some who didn’t know that I knew her rave on about her as their primary medical provider.
She had that gentle, loving bedside manner. She was patient and understanding. In every aspect of her life, she had always been a provider and nurturer for other people. She went into medicine for all the right reasons. She is very good at it and really cared about people and wanted to help and to heal them. She is about as happy at what she did in her profession as was about anyone I ever knew.
At 53, it was like a cruel joke for the disease to come after someone like Burnett. As the tremors became more noticeable, she didn’t slow down a bit. In fact, I would suggest she pushed even harder to not let it slow her down.
After that came the walking and balance issues. While she still has kept going, the tremors have gotten to the point where to be able to continue, she made a very brave decision. Last week, she had a medical procedure to implant screws into her head. This past Monday, a surgeon operated on her brain. In three weeks, a pacemaker device will be implanted into her chest.
It’s referred to as deep-brain stimulation. For people with advanced Parkinson’s-related symptoms, it is offering new hope for normalcy. In Burnett’s case, the benefits of medicine alone have lost the effectiveness they once held. Her decision was made in great part due to her desire to continue to be not only a normal functioning individual but as the chance to continue working in the medical profession to serve others.
The results of a study in the United Kingdom published in 2010 contained very positive results. The “Brain Pacemaker” patients in the study showed 48 percent had no involuntary, jerky body movements known as tremors (medical term-dyskenisia) during the day and 29 percent reported having complete control of body movements throughout the day.
One in five did report having some surgical related complications — the most common being infection. The study’s author stated that was not any greater risk than would be expected with a major surgery. Burnett’s surgeon tells her the average infection rate is about 4 percent in the U.S. and in his personal experience it is closer to 1 percent.
The procedure is not one for sissies. It involves cutting open the top of the head and drilling into the skull. The patient must be placed under a local anesthetic and able to respond to commands during the procedure. In her case, it lasted about three hours.
During the procedure, electrodes are placed deep within the brain to deliver stimulation to block the electrical signals that that cause Parkinson’s-related movement disorders. In Burnett’s case, the best case scenario will put her back where she was five or six years ago. Lois Burnett will celebrate her 60th birthday in January.
Lois has agreed to allow me to write about her journey because she wants to educate and communicate with others who share her condition. As of this writing, none of us know how the story will end. I visited with her the day after surgery and she was already at home, walking around, and in good spirits just like presurgery with her normal Parkinson’s issues. After the pacemaker is installed, we will follow her progress.
Most of us learn about illnesses, treatments and medical procedures the hard way. It usually involves a friend, family member or a loved one. In Burnett’s case for me, she is all three. Lois is my big sister.
And this past week, just like when I was a young kid, she was the person I most looked up to, admired, and she was and is my hero.
I am not asking for selfish reasons alone. For the sake of her many patients past, present and for those who don’t even know they will need her healing touch someday in the future, I want the same thing she does. We all want her not only to be healed, but once again for her to be the loving healer.
— Lindon Dodd is a freelance writer who can be reached at firstname.lastname@example.org