Robin Katsaros would never have believed that someone you met at a bar could be, in a flash, the love of your life. But, that is just what happened. She is a romantic soul, so even with both feet firmly on the ground, she knew the first time she saw her husband at a bar that she had met the man she would marry. And, she said so right out-loud to her room-mates. That was 38 years ago. Their children thrived, and life was beautifully lived between California and the Paris apartment they bought for frequent visits and the hope of retiring there some day.
Then came the day he came in from yard work with a tremor in his little finger. A small thing that Robin noticed it and questioned and that he minimized but said he had an appointment with the doctor. Unusual as it was that he made a doctor’s appointment, she went with him. That was the day he was diagnosed with Parkinson’s disease. They were in shock. Time stood still. It was devastating. S he had not ever known anyone with Parkinson’s so was in the dark about what this meant.
He pulled in, she reached out. She reached out to research conferences they could attend, was rigorous in her search to understand what practical steps they could take to counteract the effects of this disease, was tenacious about learning what they could expect and how the disease progressed, and was diligent in finding help and grabbing hope.
Robin is eloquent in her discussion not just of how she, her husband and her children responded to this disease, but in discussing many aspects of Parkinson’s. She has come to be expert on resources, the mystery of diagnosis, support groups, trials, research needs, symptoms that are wide-ranging as well as pre-cursors, who the right people are to treat it – more than a neurologist, see says it is important to see a movement disorder specialist for quality of life to be changed for the better.
She says, “Just as much as we need people with the disease we need people without it as a control group. We need people at all stages of the disease.” She advocates going to Fox trial finder. She says, “click it and sign up, and look into the Michael J. Fox Foundation for Parkinson’s research as well as the Parkinson’s Disease Foundation.
Learning to take care of someone you love who has Parkinson’s disease is a delicate balance of talents. She prays every morning for more patience. Does it help to know that it is not his fault? Sure. Robin started a group for care-partners who have their own issues. She laughs as she says, “Sometime you just want to complain, and no one really gets it like the people going through it. Robin has some advice for people who mean well and some encouragement for those who may be candidates, as her husband was, for deep brain stimulation surgery.
Listening to Robin talk about Parkinson’s disease is so much more than listening to Robin talk about Parkinson’s disease. It is listening to a love story. It is a lesson in how to endure challenges that alter expectations. It is a lesson in what matters in life. It is good solid information about research, diagnosis and medical help. But most of all, listening to Robin is a lesson on what power, diligence, intellectual capacity and the ability to laugh can do to conquer an unexpected and traumatic confrontation never expected. Multi-leveled a discussion as this is, it is best heard in Robin’s own voice that carries the strength that carries the day.
Her love letter? Crucial. Listen to her significant choices, and her hitting-the-nail-right-on-the-head observations about love letters. And, oopsie daisy, she suddenly remembers a series of letters she found that her grandfather wrote to her grandmother talking about a ring that he gave her when she graduated nursing school. Where that ring is today is a beautiful shocker. Get a box of Kleenex and click that listen button.