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The Parkinsonís Mailbag
Keeping it CLEAR

By Carey Christensen

The intricate interplay between body and mind that characterizes Parkinson’s disease (PD) has fascinated me ever since my diagnosis in 1999. For me, good mental health is the foundation for a strong body. Parkinson’s-related depression and anxiety can sap my motivation, impair my ability to make decisions and even worsen my physical symptoms. Complicating matters, the medications I take to relieve my tremor and keep depression at bay themselves have side effects, such as sleepiness, that interfere with my ability to cope.

A recent invitation to speak to a group of seniors about living with PD gave me the opportunity to articulate how I cope with the complexity that is Parkinson’s. I told the group that there is no uniform solution, no clear path to optimal health. There are, however, some practical actions that I have found very useful in my own personal road map to maintaining the good mental health that I need to remain active with PD. My acronym for them is CLEAR.

First, the “C”: Connect with others and seek counseling to supplement the medical treatment you take for your mental health. Do not become isolated! Pick up the phone! Send an email! Write a letter! Join a group! Above all, do not wait for family or friends to call first. When I find myself feeling lonely, left out and forgotten, I pick up the phone and call a friend who invariably says, “Carey, it is so good to hear from you! I have been meaning to call but the kids have been sick and the car is in the shop and I’m worried about Mother, and…” My self-pity is dispelled in an instant as I see that all of us face complications in our lives — and that maybe I can enrich my own by lending my friend a sympathetic ear.

Next, the “L”: Learn all that you can about your disease and anything else that interests you. Read, listen to the radio, watch TV, explore the Internet. Know-ledge is power, and continuous learning keeps you informed and in control.

Then, the “E”: Exercise your body with appropriate activity — walking, swimming, yoga, gardening or simply moving your arms or stretching your legs in your chair. How ever you choose to do it, just keep moving and doing! Exercise your fine motor skills by typing, writing, knitting or twiddling your thumbs. Exercise your mind by doing puzzles, playing word games or just keeping your budget. Exercise your soul by listening to or making music, painting or writing, reading a good book, looking at art, visiting your place of worship or gazing at the stars. And do not forget to exercise your heart by hugging your child, petting the dog or sharing a meal and laughing with your family and friends.

The “A”: Ask questions and be an active advocate for yourself. Your doctor cannot help you unless you are specific about your problems. Remember, it is okay to ask “why?” and it is okay to get another opinion. Parkinson’s is an extremely individual condition; just as your particular symptoms are unique, your treatment needs to be fine-tuned to address them. Do not settle for less than optimal health, do not hesitate to seek information and treatment for “secondary” mental or emotional symptoms, and do not worry about being a nuisance.

Finally, the “R”: Rely on yourself. Hold on to your independence…BUT at the same time recognize when you need to rely on others, and learn to ask for help. Maintaining my freedom is paramount to me. Asking for assistance seemed to undermine my independence until I discovered how liberating it was to have help. For example, I had been foundering for months in attempts to control my quickly deteriorating financial situation. I finally called my sister in desperation, and she responded by hopping on a plane and spending three days with me to help prioritize and organize my affairs. She said, “You have not asked for help in the 45 years we have been sisters — what took you so long?” Instead of my feeling dependent and trapped, that one weekend of help actually put me back on the path to continued independence — and reconnected me with my sister, who has turned out to be a good friend.

Identifying these key coping elements is the easy part; implementing them is a continuing struggle. Learning to rely on others has been the hardest thing for me to do, but in all truthfulness none of these things are easy, and I often fall short. Keeping it CLEAR is an ongoing challenge, but has proven to be a solid guide for me in maintaining the good mental health necessary to navigate the complexities of living with Parkinson’s.

Carey Christensen, diagnosed with PD in 1999 at age 41, is a member of PDF's People with Parkinson's Advisory Council and is Washington State Coordinator for the Parkinson's Action Network. She lives in Stanwood, WA.