After a battery of tests, the diagnosis was Parkinson’s disease. I’d never even heard of it. A lot of other people have said that too. A chronic, progressive disease with no cure available. BUT, they CAN MASK the symptoms. Dire news on my 44th birthday. It’s been a challenge. I’ve found it helps to “put it on the back burner” in your day if you can.
My limits are my own. Even with my “resident taskmaster”, PD, I have some say in how I view my life, some control of my personal being inside this cocoon-like body.
The trick is to stay just one step ahead of the inevitable changes in mobility and stamina by learning to listen to my body’s reflections. Conceding when necessary is not really a negative thing. It’s a step toward the best reality for me at that moment.
A handicap? Only dimensionally. I tell myself, Do it differently or Do it later, or Don’t do it at all. I’ve learned to weigh the “return for energy spent” quotient. Be prepared to improvise. Simply allowing someone else to pitch in and assist me. My new mantra: JUST LET GO.
I must concentrate on getting “out of myself”. To pay attention to what is going on with others, their problems and their joys. I’ve found a pastime that I can manage myself—writing. But I’ve also made a promise to myself to connect with others every day, shopping or visiting or a phone call. It helps to have a change of surroundings and routine.
Doing something for someone else or even pampering myself feels good. Support groups are out there and thriving. My husband and I have met so many truly NEAT friends who are marching to the same drummer; and share our limitations.
Making the best of a no win scenario isn’t always easy. But really, there is no other option. Each day will dawn; each night will follow. A sense of humor is a must. Looking for the sunny side of the street in life is a full time effort, but worth it.
It has been 21 years for my epic journey with PD. In today’s world I am a writer of children’s books and poetry. Some prose and a lot of ideas to share. It’s a pastime that gives me the opportunity to meet some wonderful, creative people.
Life in the slow/slower lane can be good too.
For the Children
After 14 years, my Parkinson’s symptoms were often very apparent. One is a blank, poker faced look. My granddaughter, Chelsea (age 9) was on her way to camp and was spending the weekend with us. Saturday morning I was fixing breakfast at the stove when Chelsea came up behind me and gave me a big bear hug and asked, “Are you happy, Grandma?” I realized she probably didn’t know about PD and how it affects people. I told her, “Sure, I’m happy on the inside, but sometimes my face just doesn’t know it.”
I explained that I had a disease that’s sort of like the tin man in the Wizard of Oz. My muscles sort of get rusty and don’t work right. Sometimes I’m like the scarecrow, all floppy and loose. Then my take some medicine and I’m fine again. So, if she should see me looking grim, she should just walk up and say, “Grandma, you need a hug. Your smile is rusty.”
Then she asked if that’s why I take so many pills and how did I swallow them all at once. I replied, “I imagine corn. A mouth full of corn feels lumpy and people swallow that just fine.” The next day we were eating in a restaurant. Chelsea was two seats away on the opposite side of the table. She saw me trying to (discreetly) take a handful of pills. She called out loud, “Grandma!” Then she silently mouthed the words, “Think corn.”
Now whenever someone in their family has to take pills, the motto is “Think Corn.”