I was asked by the VCU Parkinson’s and Movement Disorders Center to write a blog post for National Family Caregiver’s month. Here’s the posting I submitted:
My nineteen year journey as a young onset Parkinson’s disease carepartner has been full of joy, adventures, excitement, challenges and new experiences. When Parkinson’s disease (PD) entered my life, it was not a shock. I met my husband, Karl, post-diagnosis. I’ve never known Karl without Parkinson’s.
At this point, the progression of Parkinson’s is moving slowly with little impact on our lives. The most disruptive part of Parkinson’s at this moment is dealing with the unpredictability of the medications. Not knowing if the medications will work or not work, throughout the day, makes for an always shifting agenda. No plans are set in stone. Decisions are made on a moment by moment basis. During the day, I may say:
“Let’s wait 30 minutes and see if the pills kick in.”
“I’ll drop you off at the restaurant and go park the car.”
“No need to come with me. I’ll run into the store and grab the item we need.”
Being mindful is one of my tools to living in each moment with peace. Zen Master Thich Nhat Hanh’s key teaching is that through mindfulness, we can learn to live happily in the present moment — the only way to truly develop peace, both in one’s self and in the world.
Mindfulness has not always been a part of my caregiving toolbox. I work on being mindful every day with varying levels of success. Of course, there are times where mindfulness flies out the window and anger flies in.
Renowned author and speaker on self-development and spiritual growth, Dr. Wayne Dyer says in his book, The Power of Intention:
“When you change the way you look at things, the things you look at change.”
I find this sentence to be profound. It makes me think differently: change my attitude, change my focus, change my mood, and even change my mindset! This phrase inspires me to set a tone for each moment of my day. I invoke this phrase to improve my own mental, emotional and physical self-care.
How do you view your life? Day? This moment? We all have choices. Do we become so consumed by our carepartner/caregiver responsibilities that we forget we have choices? Optimism can be a choice.
Although we may be unable to change today’s challenge, maybe we can choose to see things differently? Imagine using this phrase as a filter to view your life as a Parkinson’s disease carepartner/caregiver living with daily challenges. If you are always living in the future, you cannot be in the present. I’m not naive enough to think that optimism solves all the issues that PD carepartners/caregivers face.
Take time for yourself to give yourself care. Even the smallest change in your own care can bring you big benefits.
Angela Robb is a Parkinson’s disease (PD) carepartner and Reiki Master who shares and teaches the value of Reiki (ray-key) to the Parkinson’s community.
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