16 Ways to Stay Positive While Living with Parkinson's Disease
This article originally appeared on DemosHealth.com and was adapted from Parkinson’s Disease
1. Learn about your illness. Don’t be afraid to read about Parkinson’s disease (PD) 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.
2. Look for ways to reduce your stress level and put yourself and your needs first. This is not selfish or self-centered; 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.”
3. 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.
4. Keep your sense of humor! Having trouble walking, being unable to talk as loudly as you want, or giving up driving are not particularly funny. However, try to put a humorous spin on everyday observations and situations. For example, if you use a wheelchair, you might look at it this way: You always have a place to sit and a pair of shoes lasts you 20 years. Remember, laughter is a great stress reducer.
5. Surround yourself with caring, loving, and nurturing family members, friends, neighbors, and co-workers. Give yourself permission to eliminate people and activities that drain your energy. Be honest with your family and friends if you’re having a bad day. Explain that you may feel terrible in the morning but fine in the afternoon. Don’t expect people to know what you are feeling unless you tell them.
6. Tell people about your illness. At any age, it can be difficult to share your feelings with your friends. And, it can be especially difficult if you’re diagnosed with PD when you’re young. Your friends may not know what PD is and may not know what to say or do-so tell them. Also, tell your hair stylist, dentist, and customer service people (as appropriate) that you may shake, lose your balance, move slowly, or have difficulties speaking because of PD. Ask for their help when you need it. People feel good when they can do something for someone else. You might also want to keep a few informational brochures in your purse or wallet because you never know who might be interested in learning more about Parkinson’s disease.
7. Try to keep a positive attitude. Even though it can be extremely difficult, as your symptoms change and the effectiveness of medications plays havoc with your life, look for the silver lining. It’s perfectly natural to mourn the loss of function and independence for a brief time, but try not to get stuck there, wallow in self-pity, or isolate yourself from friends. If you experience any combination of these symptoms-loss of appetite, feelings of sadness, difficulty sleeping, loss of your sense of humor, a sense of hopelessness, or just feel down in the dumps-you may be suffering from clinical depression. Please! Tell your doctor. Even though you have every right to be depressed about your diagnosis, depression is a treatable condition. A combination of antidepressants and/or psychotherapy can help lift your spirits and give you renewed energy to keep that all-important positive attitude. Remember: Your family and friends are not trained professionals. In fact, they may also be hurting because of your diagnosis. Perhaps they, too, could benefit from talking to someone about their fears and frustrations. Listen to audiotapes and/or read books that promote positive thinking and deliver a healing message. The public library and bookstores offer an array of these materials.
8. Set priorities and focus on tasks that must be done. Tackle one job at a time. Break down activities into a series of smaller steps, and ask others to assist you with the difficult portions of the task. Avoid working or sitting for long periods in the same position. Move around periodically.
9. Allow extra time to do everything from eating, drinking, and dressing to walking, talking, and writing. Recognize that everything seems to take longer when you have Parkinson’s disease. You’ll also find that simple tasks most people take for granted, like swallowing saliva, chewing food, changing facial expressions, and projecting your voice, now require conscious thought. Plan to do activities around those times when your medication gives you the most benefit. Mornings are often a better time of day to exercise and work because you are not as fatigued as in the afternoon. Although you may get fatigued during the day, be careful not to nap too much; otherwise, sleeping at night may be difficult. Taking a short nap after lunch can be revitalizing, but try to limit your daytime sleep so that your nighttime sleep can be more restful.
10. Consider attending a local PD support group, no matter what your age. Support group members understand your struggles because they face or have faced the same challenges. If you are reluctant to attend a PD support group because you will see others with advanced cases, and you don’t think you can handle that, talk on the phone with others who have PD. Or, start a small group that gets together for lunch or coffee. Being with others who have PD may alleviate fears rather than worsen them. It is encouraging to see people with PD still driving, working, and caring for their families.
11. Contact your local Independent Living Center (ILC). Every community in the United States is part of a national network of independent living centers. More than 500 community-based, nonprofit ILCs serve people of all ages and disabilities and their families. Their goals are to provide information and referral, advocacy, peer support, and independent living skills training. These centers can: • assist you in finding out about disability services in your community; • connect you with others to advocate for changes in the law or rules; • help you hire and manage personal care attendants; and • put you in contact with people who have faced challenges similar to your own.
12. Understand that it is common to have fluctuations in your mobility and energy levels during the day. Often, these fluctuations coincide with when you take your medications, with the most fatigue and the least mobility coming as the medication wears off.
13. Be willing to change the way you do things. Remain flexible. Compromise. Accept the help that is offered and accept that more than one way exists to wash the dishes, put on clothes, or get from here to there. Practice patience—with yourself and others.
14. Ask your doctor to prescribe evaluations by an occupational therapist (OT) and physical therapist (PT). An OT will help you discover new ways of doing simple, everyday tasks like dressing, eating, and cooking. He can show you how to simplify your work and daily activities and conserve your energy. A PT will help you with mobility and home accessibility. Ask for a home evaluation, and ask the OT and PT to make suggestions for making your home and daily activities safer, more accessible, and easier to manage.
15. Always try out any mobility equipment before you buy it. That includes canes, walkers, manual and electric wheelchairs, transport chairs (all four of the wheels are the same size), and three-wheeled scooter wheelchairs. Check out the size, weight, and ease of operation. If someone will be pushing your wheelchair, explain to that person about “courtesies of the road,” including speed, cornering, handling leg rests, backing into elevators, going up and down curbs, and the like. If you are considering purchasing a three- or four-wheeled scooter or wheelchair, find one that is easy to transport. Some chairs are lightweight and disassemble easily; others may require a lift that picks up the chair and puts it into the vehicle with minimal physical effort. Some automobile manufacturers, like Ford and Toyota, offer discounts and/or rebates for the purchase of adaptive equipment for people with disabilities. Ask your dealer about options and programs available.
16. Make exercise part of your life. Exercise does not reverse or delay the symptoms of PD, but it does help you make full use of your potential and improve your quality of life. It also helps prevent complications, such as contractures of rigid, poorly moving limbs. Walking, swimming, range-of-motion exercises, and simple stretching regimens offer opportunities to socialize and can do wonders for your energy level, strength, and general feeling of well-being. Yoga and tai chi can help with balance, as well as providing a time for quiet meditation. Mindfulness classes can help you de-stress and focus on the most important things-your family and your life, rather than your illness. Your doctor or physical therapist can suggest an exercise program that will help keep you active no matter what your physical limitations or energy level. Ask several friends and/or family members to be your workout buddies, so that you can have daily encouragement to adhere to your program.