I see now that it could not have been easy to be a handsome young man with only one leg. Bill often made it look easy because he chose to immediately embrace his pioneering role and become a teacher When something happens that sets a […]
Blog
Changing Abilities
I say, “With Parkinson’s old things become new things.” In my 30 years of life with Andy, before Parkinson’s- from age 17-47 for me- he is the one in our partnership who planned for our mutual goals. I was a willing and creative partner and […]
Slower Thinking
I like to and am able to move to many types of music and I also love to be in synchrony with Andy. He doesn’t have the ability to adjust to the variety of music life presents and so it is up to me to […]
Too Much Saliva
I know this symptom could become another reason for Andy to stay out of the public eye and grow more isolated. In my moment of feeling grossed out, I also know emphatically that we need to find a way to live well with this too. […]
Swallowing
Incurable disease is a life sentence.Let’s reemphasize that.Incurable disease is a life sentence not a death sentence. I thought that Parkinson’s disease hijacking Andy’s voice and rendering him a forever whisperer was as bad as that could get, until we were in speech therapy for […]
The Silence of Parkinson’s
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. […]
New Wave Treatment for Loneliness and Depression
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 […]
New Wave Treatment for Freezing
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 […]
Off Script
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 […]
New Wave Treatment for Tremors
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 […]
Love is the New Wave Treatment
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 […]