Shared Perspectives for Care Partners By Ava S. Butler GUEST EDITORIALS
Cherish the beautiful moments and keep them in the forefront of your mind. There are plenty of moments of pure hell and they will take over your consciousness if you don’t try hard to balance your thoughts. For me it was the tender kiss that still took my breath away, the gentleness of Richard placing his hand on top of mine, and his beautiful blue eyes on the days they still twinkled. Or the way that Richard’s face lit up when one of his caregiver’s daughters sang him a song she learned in school that day and we all sang the ABC’s song together. Find joy in the beauty of the world around you. Take time to acknowledge when the sun is shining, the birds are singing, a hummingbird is outside the window, the leaves are turning or the neighborhood children are playing gleefully in the pool. Be grateful for the big and small acts of kindness that others show you. Be vulnerable enough to let people help in ways you would never ask for or even think of. Kindness comes from people you know and from complete strangers who jump to action when they see you need help. Several years ago, a man at the Safeway came to our rescue when Richard was hallucinating (due to his Lewy body dementia) and very afraid. He was running away from me calling for help and I couldn’t get him in our car. The man stopped pumping gas to tell Richard he would help. He told Richard that he was safe and offered him his water as I finally got Richard to take
Parkinson’s increases your risk signifi - cantly. My dear husband, Richard had both. Richard died when he was 65. He was diagnosed with Parkinson’s on May 26, 2010, and he left the earth on March 26, 2017. That’s the average amount of time between diagnosis and death. Seven years. Seven short and very long years. I’m an organizational development consultant and I specialize in partnering with business leaders to achieve transformational change. I’ve lead dozens of large scale change projects, most of them moving individuals, teams and organizations to a stronger and better place. I think of change as a positive thing and managing transfor- mational change is my life’s calling. But not all change is wanted, and not all change has a happy ending. My dear husband’s condition took over our lives. We fought a battle every day that we could not win. Richard’s ending wasn’t fast, and it wasn’t pretty. It was costly, time consuming and emotionally draining. No drug could save him and although there is hope for future generations afflicted with these diseases , it was too late for Richard. We made it the best it could be, but our efforts didn’t change the outcome. I managed the change that nobody wants. There’s an irony to unwanted change happening to the change expert. And although my background provides helpful skills and experience, I was in uncharted waters. I learned every day, whether I wanted to or not. Here’s some of what I’ve learned. I hope its advice that you can use if you too are dealing with any change you don’t want and can’t avoid.
April is Parkinson’s Awareness Month. Parkinson’s disease is a chronic, degenerative neurological disorder that affects one in 100 people over age 60. Men have a somewhat higher risk than women. While the average age at onset is 60, some people are diagnosed at 40 or younger. It’s a disorder of the central nervous system that results from the loss of cells in various parts of the brain, including the part that produces dopamine. Dopamine is responsible for transmitting signals within the brain that allow for coordination of movement. Loss of dopamine causes neurons to fire without normal control, leaving patients less able to direct or control their movement. Lewy body dementia (LBD) is not as well-known as Alzheimer’s, but it is the second most common form of dementia. More than 1.3 million Americans are impacted by LBD, but little public attention is paid to this lesser-known disorder. The disease did get a boost in publicity when Robin Williams was diagnosed with LBD after his suicide, but far more public information is needed. Lewy body dementia is a progressive neurodegenerative dementia closely associated with Parkinson’s disease. LBD is also a form of Parkinsonism, meaning that it includes some of the motor symptoms of Parkinson’s disease. While most people with Parkinson’s do not also develop Lewy body dementia, studies suggest that having
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Pima Council on Aging
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