Living well with Parkinson’s disease
By Lisa M. Petsche
Parkinson’s disease (PD) is a chronic, progressive disorder involving damage to nerve cells in the brain that control muscle movement.
According to the Parkinson Society Canada, approximately 100,000 Canadians are living with Parkinson’s disease. Given that incidences increase with age and that the population is aging, this number is expected to double over the next decade. The majority of cases develop after age 60. But while Parkinson’s disease is the second most common progressive neurological disease after Alzheimer’s, many people who have it still live fulfilling lives.
The main symptoms of PD are shaking (known as tremors), slow movements, rigidity (due to muscle stiffness), and balance problems. Other symptoms may include low energy, loss of coordination, loss of facial expression, difficulty initiating or continuing movement (“freezing”), stooped posture, a shuffling walk, decreased speech volume and, not surprisingly, depression.
Early symptoms are subtle and are often ignored. Sometimes family or friends notice them first. Diagnosis is arrived at through a thorough examination by a neurologist, who may order tests to
rule out other conditions with similar features.
Although symptoms and rate of progression vary among individuals, usually PD advances slowly and patients can lead active lives for some time.
While no cure exists, medications are available that alleviate the symptoms. In cases where medication doesn’t work, surgery may be considered. Lifestyle modifications are an important part of any treatment plan.
Upon diagnosis of a degenerative condition such as PD, patients typically experience shock or disbelief. Subsequent emotions may include anger, fear, anxiety and sadness. Time frames vary for individuals, but eventually patients come to accept the reality of the disease. Then they can focus on taking control of their situation as much as possible.
If you or someone you love has been diagnosed with Parkinson’s disease, there are ways to become empowered mentally, emotionally and spiritually.
Mental well-being
Learn as much as possible about PD and its management, • and educate family and friends.
• Be receptive to learning new ways of doing things. Concentrate on what you can — rather than cannot — do.
• Recall past life challenges and how you overcame them, to remind yourself of your resilience.
• Cultivate an attitude of gratitude. Learn to live in the moment and enjoy life’s many simple pleasures.
• Find role models: celebrities or other people who are living well with PD, from whom you can draw inspiration.
Emotional self-care
• Allow yourself plenty of time to adjust to your illness and the changes it necessitates. Recognize that your family and friends will also need time to adjust. Let them know how you wish to be treated, and keep the lines of communication open.
• Find an outlet for expressing your thoughts and feelings — talking with a friend, keeping a journal, or attending a support group.
• Accept that how you feel and what you can do may vary from day to day, and be flexible about plans and expectations.
• Stay connected to people who care. If your social network is limited, develop new connections through volunteering, taking an adult education course, or joining a club or group.
• Seek help from your family doctor or a counsellor if you continually feel sad, angry or overwhelmed. Depression is highly treatable.
Spiritual well-being
• Set aside quiet time each day to nurture your spirituality and help keep you grounded. Do things that centre you and bring inner peace, such as meditating or getting out in Nature.
• Do things that provide you with meaning and purpose, such as writing a family history, getting a pet, or helping someone.
• If applicable, turn to your religious faith for comfort and strength.
Practical tips for daily living
Because PD is incurable, the goal, from a medical perspective, is to achieve the highest possible level of functioning and prevent or minimize complications. The following are some strategies that can help.
• Find a neurologist whom you respect and trust.
• Follow the management plan prescribed by the doctor and allied health professionals, which might include medication, diet changes, exercise, rest, adaptive aids, lifestyle changes, stress management techniques and regular medical checkups. Let them know right away if the plan is no longer working.
• Join an exercise class for people with PD. To locate one in your area, call the Parkinson Society Canada at 1 800 565-3000 or go online to www.parkinson.ca.
• Use a cane or walker when recommended in order to minimize the risk of falls. If mobility issues prevent you from getting around in the community, rent or buy a scooter or wheelchair.
• Set up a record-keeping system to organize your health information. Ready-made products can be found in office supply stores and bookstores.
• Do as much for yourself as possible to maintain your abilities and independence. Set priorities, simplify tasks and learn to settle for less than perfection.
• Find substitutes for enjoyable activities you can no longer engage in. Pace yourself, though, to avoid exhaustion.
• Make your home as safe as possible. For example, remove scatter mats and install handrails along stairs. Arrange for an occupational therapist to perform a home assessment to identify hazards
and recommend ways to carry out daily activities more easily and safely. If your home’s accessibility is inadequate, renovate or move before a crisis develops.
• Accept offers of help and ask for assistance as needed. Also find out about services in your community that can help now or in the future. n
Lisa M. Petsche is a medical social worker and a freelance writer specializing in health and boomer and senior issues.
