Being diagnosed with a chronic progressive illness like Parkinson’s disease (PD) changes your life forever. Don’t give up or give in to the disease! Today is a very hopeful time for people with PD. I hope these thoughts and observations will help you.
- Learn about your illness. Don’t be afraid to read about Parkinson’s disease or talk to others who have it. Remember that no two cases are exactly alike, and no one can predict exactly how the disease will progress or affect you. Likewise, no two people respond exactly the same to treatments and medications. Gathering information about your illness, through books, medical journals, and the Internet, will empower you to make informed decisions about your medical care and the treatment options open to you. If you don’t have Internet access at home, visit your local library and ask a librarian how to visit helpful web sites. See if there is a Parkinson’s disease or movement disorder clinic in your area. Many advances have been made in the treatment of PD. General neurologists may not be able to keep up to date on all areas of neurology; one who specializes in PD can confirm your diagnosis, review your medications, and consult with your primary care physician on your treatment. Once you understand your illness, you are in a better position to take responsibility for your healthcare.
- Look for ways to reduce your stress level and put yourself and your needs first. This is not selfish or selfcentered; you must take care of yourself first! You are the authority regarding your own body. Rest when you’re tired. Be protective about how you spend your time and energy; Parkinson’s disease uses a great deal of one’s physical energy. Coping and adapting takes a great deal of emotional and mental energy. Do those things that are important to you and your family. Give yourself permission to say “No,” and not feel guilty. When you are feeling better, you can say “Yes.”
- Try not to be self-conscious about the visible symptoms of your Parkinson’s disease. It may be challenging, but look for ways to work around the problems. If you are self-conscious about the way you walk, consider using a wheelchair. If hand tremors make it difficult to eat with utensils, and you feel embarrassed eating in a restaurant, order foods you can eat with your hands. Ask the waitress to put each item on a separate plate or bowl; that way your tremors are less likely to knock food off the plate. Don’t let your visible symptoms of PD diminish the enjoyment you get from spending time with your family and friends. They love you for who you are and understand.
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