A care partner’s perspective about the things you learn living a life with Parkinson’s disease
By David M. Maloney, Husband and Care Partner, PUW Team Nashville
My wife Gayle was diagnosed with Parkinson’s disease in 1998 – 37 years old, two young children, and a husband trying to be supportive.
I don’t know how I would react if I had been diagnosed with Parkinson’s disease but Gayle’s reaction was no surprise. She met the disease with determination, optimism, courage, and grace. She was determined to lead a normal life. She was confident that a cure would be found.
For almost ten years, Gayle’s medications were managed and allowed her to lead a somewhat normal life. But those meds that we had been told would stop working, did. Not all at once and not all of the time. Shortened length of effectiveness. Unpredictable dose failures. Or, just as difficult, medication side effects such as uncontrollable excessive movement called dyskinesia. We were fortunate. Gayle was a good candidate for Deep Brain Stimulation (DBS) surgery. Almost twelve years to the day following her diagnosis, Gayle underwent bilateral DBS surgery.
To say the surgery was a success is an understatement. It was life changing. Gayle got her life back, but we know that the underlying disease is still progressing. Without DBS, her life, our lives, would be much more difficult.
Parkinson’s disease is a progressive disease without a known cure. Our life with Parkinson’s has also been progressive. With Parkinson’s having been part of our life now for 16+ years, it is difficult to remember our life without it. Our life and a life living with Parkinson’s disease are the same.
Initially, there is the shock of hearing that the person you love has a disease that does not have a cure. You first want to learn everything possible about the disease – surely people are working on a cure. They are, but a cure takes a long time. You learn to accept setbacks and settle in for the long term. You think about the future differently. You have to have direct and honest discussions about doing things now versus waiting until a future where doing some things may not be possible. You have these discussions in addition to all of things that all families face and you have to have them with a partner whose emotions have become a little more fragile.
You adjust by doing small things like going to matinee movies because your wife can’t stay awake in the evening. You plan for travel differently because she can no longer drive any significant distance by herself. You want to help your loved one. You learn to balance your desire to help, to speed things up, with the person’s desire, sometime stubbornness, to be independent and do things for themselves regardless of how long it takes.
Following DBS surgery, Gayle’s speech became more slurred. This, coupled with the soft tone associated with Parkinson’s, often makes it difficult to understand her. We have an ongoing dialogue about my “selective hearing” and her speech.
You also discover that unlike a single entity that was the beneficiary of the wildly successful ALS ice bucket challenge this summer, that there really isn’t a single voice for Parkinson’s disease. You wish there was a single national entity for focused attention. The Parkinson’s Unity Walk and Parkinson’s Action Network come the closest to being that entity.
Finally, you realize that this is your life together. All people and all families face difficulties in life. Living with Parkinson’s disease is just one of the things that makes our life a little bit unique. Whether it is because of Parkinson’s disease or because I’m now older (I suspect a little of both), above all, you learn patience and hope. You learn to appreciate all of the moments, both the large and small, of the life that you are living together. You learn that people want to help and that you and your family can help others by participating in clinical trials, raising funds for research, by being available to them to listen, and by sharing your experience.