Written by Connie Carpenter Phinney
Parkinson's entered our lives when our kids were small and Davis’ career was thriving. But truly, it had been lurking and provoking us for years. Fatigue was the primary early symptom that affected our marriage and family, but Davis unwittingly was dealing with various symptoms. I remember nagging him to pick his feet up when he walked because he stumbled a lot. His voice softened and TV producers asked him to better modulate his voice, but he couldn’t seem to do it. The tremor emerged in the spring of 2000, and that is what finally got him to the doctor – or in his case, to many doctors.
Diagnosis is traumatic. And for a while it felt like the bottom had fallen out of his world. Max Testa, his cycling team doctor from Italy, remarked that it would take him two years to adjust and adapt to this new challenge. He was right. But the neurologist who told him that he’d feel “as good as ever” was wrong. So, you get mixed messages from even the doctors, and in the end, how you respond to the diagnosis really depends on where you are in your life.
Once we settled into the new life – post-Parkinson’s diagnosis – we did realize how lucky we were in one sense. Davis stopped travelling. He had been on the road working somewhere between 75 and 100 days of the year. This was far less compared to his previous life as a cyclist, when he was away more than 150 days of the year. But it was a lot for the kids and for me. So Parkinson’s gave us one treasure: We got Davis back. He is a gifted father. It would have been a shame for him to miss so many of the fun years with the kids.
My dad told me an interesting thing one night when we were talking about the course of his life. He said that when my mom was diagnosed with multiple sclerosis, he lost his ambition. He wondered aloud if that was a bad thing. I asked him, “In what regard?” And he said that he was content with his family business and never had the desire to risk growing it. He thought maybe he could have made more of his life. I told him that he was the best dad imaginable, and that I was so grateful for that. While I knew he worked hard, he put his family first, and caring for us kids and my mom was his best work.
For me, when pressed, I can tell you that watching my strong man (Davis) suffer is tough; the diminishment of so many of his strengths is heartbreaking. It is our reality, and we accept it. There’s a fine line between giving in and giving up. I think we strive to stay on the high wire every day. Some days, he has to give up some of what he’s planned to do, but it’s not like throwing in the towel. It’s the rest required of a soldier who is preparing for another day. Together we soldier on. Some days feel more daunting than others, but we know good days will come.
On a daily basis, the hard part has been to keep Davis tasked. I could do it all, and people who know me can attest to this. If I did do it all, I’d probably start to feel angry and overburdened. I realized that Davis needed to be engaged in his daily life, and if he was going to stay home, he had better contribute. I give him duties and departments – cars, bikes, dishes, for example. Initially the Bike Camp business was thriving, and I still needed him to help with that. Physically, when he couldn’t manage riding his bike, he could photograph our clients and provide slide shows or videos of the week-long tours. I learned to parcel out tasks that he could do. Granted, the fog that he often lives in mentally and the weight of Parkinson’s on him physically make every day challenging, and often we need to be spontaneous in terms of what he can do, day by day. I find that if we try to share the burden – if we share the weight of the load – then each of us feels better.
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The remainder of Connie's article and much more can be found in our free Every Victory Counts® manual. Our Every Victory Counts® manual gives people living with Parkinson’s, their care partners, and their family members the tools they need to take control of their own Parkinson’s treatment through a proactive approach to self-care.
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