Parkinson’s has an effect on a patient’s voice and therefore on their ability to communicate. During Andy’s first 10 years living with Parkinson’s, his body shook like hell. The list of what he couldn’t do anymore was extensive and grew longer as time went on. […]
The seasons of life rightly include different people at different times. Parkinson’s is a disease that often isolates the patient- not because of contagion but because the symptoms can make one feel unfit to be out in the world. The world can also be unsafe […]
It’s weird. Just like so many symptoms people with Parkinson’s live with, “freezing” can only be helped if it is known. Education is part of becoming at ease and living well no matter what the symptom is. The term “freezing” in Parkinson’s disease, refers to […]
Andy and I are in Hawaii for three weeks. We arranged a home exchange here last year and were able to do it again. Our borrowed house is on a hill overlooking the Pacific Ocean and we swim every morning at Kauna Oa beach, a […]
The way Andy got through those years of not being able to feed himself, or move safely without help, or write anything, or sit quietly and be still was:1) Developing the deepest spiritual sense of biding time.2) Waiting as an active response.3) Finding the bravest […]
We run out of answers.We run out of patience.We run out of ideas and the capacity to witness suffering.We run out of kindness and compassion and the ability to be nice.When we run out of these, we can only turn to love. Being Andy’s caregiver […]
For me, this book and the formula of prayer it shows how to do, was compatible with my Christianity and a missing piece in learning to effectively ask for what I wanted and needed. Long before there was Parkinson’s in my life, I learned how […]
I’ve learned so much in my role as Andy’s caregiver. The learning isn’t actually a surprise but it feels surprising to me because it was never an intentional choice, like other big parts of my life. I graduated from high school in three years […]
Family caregiving is becoming more and more relevant as medical interventions make living longer lives possible. As our population ages there will be more need for care. The VA has offered to pay family caregivers, in certain instances, because the outcomes are better if the […]
A friend of mine has a master’s degree in public health. She was waylaid in her career as a university hospital administrator, by a congenital disability. Nevertheless, she has found ways to use her in depth knowledge of medical systems to advocate for some of […]
