PD does impose major lifestyle changes, and it is easy to feel an overwhelming sense of loss. You can no longer do many things as easily as you did before, or perhaps you may not be able to do them at all. Although PD may define what you can and cannot do, it does not define you. You are not your disease. You can regain a measure of control by making a list of all of the things that you can do. Then make another list of all the things that you can do to care of yourself, such as diet, exercise, managing stress, and taking your drugs on time. Perhaps one of the most difficult hurdles is learning to accept help from others. Because PD will make you unable to do certain things, you will need help. Learn to accept help gracefully, without losing your dignity. Giving help has its own rewards, one of which is an offer of appreciation.
Another difficulty is responding to the unkind looks or remarks from others, particularly strangers. Although they may never have known anyone with PD, their rudeness or pity is unwelcome. Education—improving public awareness and media coverage or making information about PD available to others—is important. If you have the opportunity and the courage, you could explain to them that you have a neurologic disorder that affects your walking and balance. The Parkinson Disease Society of Great Britain has a small card that can be handed to people that says: I have Parkinson disease. I may be slow to move or unsteady on my feet. I may have difficulty speaking and writing clearly. I can hear and understand you. Please allow time.
Staying active and interacting with others give opportunities for expanding your horizons and staying in touch with others. Find, join, and attend PD support groups, which offer camaraderie with other folks who have gone down the same path as you, who know how PD feels, and who can share with you their best methods of coping. They are also an excellent source of knowledge about PD and can keep you posted on the best books and web pages or the newest developments in research and treatment of PD. Friends made in support groups can keep you from feeling alone in your circumstances.
As symptoms progress, it will be necessary to revise your expectations of yourself. Insisting on doing things or driving yourself to places the way that you used to will bring on increased stress and anxiety. Your successes and accomplishments prior to having PD are not realistic goals now. Adjust your priorities accordingly. Set goals for yourself that are attainable and challenging but that can be accomplished within your physical and emotional limits. Remember past successes, as those memories can be inspiring when you don't feel encouraged. Focus on small victories, and keep track of them. Reward yourself as you meet each goal. Progress will also keep your spirits up and keep you feeling in control of your life. Your accomplishments will bolster your self-esteem.
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