raising our voices

Blog Posts

Depression and Balancing Life

A person might experience depression at any time during the journey with Parkinson's Disease, even before diagnosis. Depression in PD is due to chemical imbalances in the brain. I have had Young Onset Parkinson’s Disease since 2011. Maybe my symptoms of depression were not diagnosed earlier.

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Three Days Before DBS

I like my brain. We’ve had a fairly good relationship over the years. It has generally served me well and has become more reliable with some teaching and training over the years. There are certain parts that are especially nice, the parts that put words together in interesting combinations, the parts that can convey feelings and images to others, the parts that entertain and find humor in many small and dark things, the parts that attempt to enter into someone else’s experience and project into another person’s world.

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A Long Way to Go

I worked as a nurse, a nurse midwife-nurse practitioner and a clinical director in my first act. In that first act were the years that I had trained for and dreamed about serving women with reproductive health needs and helping to guide women through labor and delivery of their newborn babies and to help through many phases in their lives. Then I was diagnosed with Young Onset Parkinson’sDisease. I left my clinical work and now am an author, advocate and artist.

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Building from Small Acorns

Women’s empowerment and women’s voices in healthcare have exploded on social media recently. When we started the Women’s Parkinson’s Project, we knew we wanted to address a need, a gap, we saw. That gap was a place to share the voices of women, through stories, about their day-to-day struggles and their journey with Parkinson’s Disease and other neurological conditions. We wanted to go slow. Give our project time to build up. We all had jobs, families, commitments, and of course our main partner to take care, the disease itself.

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The Fastest Envelope Stuffer in the West

"Your disease is progressing," my doctor told me last June. I stared at her. I didn't understand. I was a slow progresser. Slow on the slow scale, the last snail in the race. I envisioned slow being where I was for the next twenty years. I knew that didn’t make sense. I knew I was partly in denial. But I held on to that belief. It got me through. I felt that I was given that magical fairy dust that would freeze the disease in time within my body.

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A New Baby and a Diagnosis of Young Onset PD

So, there I was 3 months pregnant with a much wanted second child, having a hot chocolate on the side of a snowy mountain in the French Alps when my hand would not stop shaking. When my husband came off the slopes with my 10-year-old son, I remember saying to him ‘as long as it’s not Parkinson’s.’

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Hands

We use our hands to function well in the world; to put on our clothes, to feed ourselves, to care for those we love. I have used my hands to help mamas bring their babes into this world. I was a honored to work as a midwife “catching” babies for over 15 years. A collection of old weathered hands hung on my office wall. Hands fascinate me; what stories might hands hold? What special touch were they a part of? Hands of the aged, what wisdom might they hold?

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Birth of a Project

We do ourselves an injustice by just suffering through it. Life, that’s the it. Women, that’s the we. We are so busy juggling families, work, caring for elder parents and advocating for others that we forget to advocate for ourselves. And if we do not advocate for ourselves, who will?

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