TODAYQ: My closest friend and colleague has Parkinson’s disease. Her husband has been the primary caregiver for the past five years. He seems exhausted yet is doing the best he can. Although he clearly needs assistance, he refuses to get help in the house and only occasionally drives his wife to a physical therapist. I don’t think my friend is getting optimal care. She is becoming more isolated, unsteady, thinner and increasingly dependent. What really is Parkinson’s and what can be done to help a person? Is there anything I can do, besides worry?
— D.H.
Dear D.H.:
You are faced with a very frustrating situation.
First, a little bit about the disease from the Parkinson’s Disease Foundation and the American Parkinson Disease Association (APDA).
Parkinson’s disease, among a group of conditions called movement disorders, is neurologically based. It is chronic and progressive. Approximately 1 million people suffer from Parkinson’s. And about 40,000 cases are diagnosed each year.
The incidence of the disease increases with age, and, unfortunately, the cause is unknown. Symptoms can be mild without affecting daily activities. In other cases, the symptoms can be aggressive, leading to physical limitations and disability.
Here is some information about what happens when someone has this disease:
A group of cells in the brain (substania nigra) produces a chemical called dopamine. These cells begin to malfunction and eventually die.
Dopamine is a neurotransmitter or a “chemical messenger” that conveys signals to parts of the brain that control movement and coordination. When the brain cells begin to die, there is less dopamine produced. The result is an impairment of movement with tremors, lack of balance and stiffness.
In addition to medication, what can be done?
The APDA recommends activity, good nutrition and creating the right physical environment. There are techniques and aids that can assist a person to remain independent and as safe as possible. For example, the bedroom should be free of clutter; throw rugs should be removed or taped to the floor. Casters should be removed from furniture. Shoes and small objects should be off the floor, particularly at night.
Suggestions for bathroom safety, grooming, the kitchen, mealtime, walking, stairs and getting in and out of a car are published by the ADPA in Being Independent. The publication is available at HealthLinks, a consumer resource library of the new West Tower of the Torrance Memorial Medical Center (310-517-4711).
Here is an option you might suggest that will give the caregiver a rest and your friend with Parkinson’s an opportunity to function at her best — Adult Day Care. Individuals are not patients, clients or customers. They are participants.
I recently had the opportunity to visit Family Adult Day Health Care in Lomita. The environment was light, bright and positive.
To attend, people need to be referred by their physician. They then are evaluated by the day-care staff, and a plan of care is developed. That plan may include physical therapy, occupational therapy, speech and maintenance therapy, nutritional counseling and/ or psychological counseling. The final plan is discussed with the family.
During the day, participants continue with their regular medications under the supervision of a nursing staff.
What do participants do? They engage in exercise classes and small group activities organized according to their abilities. These activities might include art, music and dance. They take trips and have opportunities to learn and express themselves. For example, one individual learned to use the computer and access the Internet; another writes poetry.
Owner Charity Abracosa says, “Participating in adult day health care programs can help avoid inappropriate nursing home admissions. The emphasis is for individuals to stay with their families and be given opportunities and support to function at their highest level.” For more information, call the center at 310-602-0123.
For more about adult day care, contact or visit Healthlinks and request materials called “Adult Day Services.” Approximately 20 are listed, with a guide on how to select the one that’s most appropriate.
D.H., perhaps your primary role is to be a good friend. Visit often, stay in contact and consider recommending some tips to your friend’s husband. At least you know that you’ve given it your best shot — because you care.
Thank you for your good question and best wishes.
Helen Dennis is a specialist in aging, with academic, corporate and nonprofit experience. Send her your questions and concerns in care of the Daily Breeze Today section, 5215 Torrance Blvd., Torrance, CA 90503-4077; or fax to 310-540-7581, or e-mail to [email protected].
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