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April is Parkinson's Disease Awareness Month. I've been posed five questions by the Parkinson Society British Columbia and I'll be answering one each Monday.
The fourth question is, "How did Parkinson's disease change your life? How did it impact you and others close to Sandra?"
Whew! This question requires more than a blog post to answer fully, but I'll confine myself to the main points.
Parkinson's disease changed Sandra's life by robbing her of the ability to live it. She had been active, engaged, ran a hypnotherapy counseling service, and loved painting in oils. As the disease progressed, she lost those abilities. I could see her confidence slipping and her doubts about her abilities growing. Her voice became soft, sometimes too low for me to hear, and she started to need help in more areas of her life. The disease dragged her from self-reliance to dependence. Yet the only time I saw her mourn what she was losing was when her driver's license was pulled. That had been a symbol of her freedom and it was gone.
For me, her Parkinson's meant I was now a caregiver, even though I had no idea what that meant or how to do it. My work took me to clients' offices, often out of town for a day or two at a time. But as she declined, I could no longer leave her alone. I had to give up my consulting practice, which not only dried up our income, but it isolated me from the social contact that work normally provides.
Her disease also meant that our plans as we got older were no longer possible. We had talked about aging. Neither of wanted to retire. We both loved what we did. We talked about cutting back, about freeing ourselves from the rigors of a schedule, but still working at our own pace. We talked about how we would travel, engage with our community, visit family and friends, and most important, grow old together in companionship and love. All of that evaporated with her Parkinson's and I had to develop a new set of expectations.
How did her Parkinson's affect others close to Sandra? That varied. She had several friends whom she would meet for coffee. After her diagnosis and as her symptoms became more apparent, they disappeared. When she called them, they would make up some excuse why they couldn't get together with her right now, but that they'd call. They never did.
But there were other friends who remained loyal and supportive, who visited, who showed her that they cared. They were the ones she focused on. I've since found out that this is common. Some people abandon those in trouble, others rally around. It's the latter ones who deserve to be called friends.
Sandra's Parkinson's uprooted our lives and our life plans. We had to adapt. Somehow, we both did.