Part of a series on how to care for your aging parents.
About 60,000 Americans will be diagnosed with Parkinson’s disease this year. Many of them will be baby boomers…
…as the average age of onset for the slowly progressive neurological disorder is 55. 1,2
Seven to ten million people worldwide live with Parkinson’s. It is not a fatal disease, and some people go years with just mild symptoms such as a tremor in one hand or a slight alteration in posture or countenance. Still, a Parkinson’s diagnosis decidedly alters an individual’s life and the lives of those they love. 1
How does Parkinson’s differ from Alzheimer’s? Fundamentally, Parkinson’s is a disease affecting muscle control, movement, and balance. It destroys cells in the substantia nigra part of the brain stem, leading to an inadequate release of dopamine to the brain. That in turn hampers muscle movement and coordination. 2
Parkinson’s and Alzheimer’s are both progressive and neurodegenerative diseases, but Alzheimer’s primarily afflicts the memory to the point where those burdened with it live increasingly in the moment. While some people with Parkinson’s eventually develop memory and concentration problems, some do not. Sadly, people can suffer from both diseases at once. 3
Parkinson’s disease is also characterized by the presence of Lewy bodies, the hallmark of Lewy body dementia. In some cases, the appearance of Parkinson’s symptoms may herald the other dementia. Physicians and gerontologists frequently refer to the “one year” rule – if a patient goes for at least one year after a Parkinson’s diagnosis without any signs of dementia, then that is classified as Parkinson’s. If a Parkinson’s patient suffers from clear cognitive impairments within one year of the initial diagnosis, doctors may change the diagnosis to Lewy body dementia. 4
The first year after the diagnosis is very important. In fact, you should accompany your parent (or spouse) on all (or nearly all) of the visits to specialists and occupational and physical therapists that occur during that time. Your parent or spouse may feel waylaid by the diagnosis, and your presence not only reassures but also ensures an extra set of ears are listening to what these healthcare professionals say.
A person with Parkinson’s needs to know how to take their medicines and what kind of changes to look for in physical or mental behaviors. A son, daughter, or spouse can help them keep up with medication schedules and help them “keep watch” in this regard.
Levodopa (L-dopa) has long been the most effective drug prescribed to control symptoms of Parkinson’s in the early stages of the disease; it converts to dopamine in the brain. It is by no means the only drug prescribed to address Parkinson’s. In fact, a person with Parkinson’s will likely have his or her medication adjusted at least once, perhaps multiple times.2
Levodopa is a strong drug with significant potential side effects such as low blood pressure, arrhythmia, confusion, and hallucination; it also may increase dyskinesia (uncontrolled muscle movement) in patients. It usually works well for several years, but sometimes after that it must be augmented or supplanted by other drugs. In addition, L-dopa and other drugs cannot control Parkinson’s symptoms 24/7. Other medicines may need to be prescribed to control symptoms during these so-called “off times” of the day. 2
Your mom or dad (or spouse or partner) will eventually need more time to complete a task, to get ready to go out, even to get ready for the day. Parkinson’s makes the muscles rigid and slows muscular function, even at the lowest levels. Even so, refrain from the idea that you must help your mom or dad with everything. Ask your parent how much help they want right now. Encourage your mom or dad to do as many things around the house as they can. They may want to keep doing all their daily activities for as long as they can; they may want to stop doing others and hand those chores over to caregivers.
What if you don’t live nearby? If you are not the primary caregiver, you can still make a commitment to see your parent once a week or once a month. Consider rewarding the primary caregiver once a month with a “care package” of things or treats or experiences they will enjoy, either coincident with your arrival or independent of it. Think about taking over as primary caregiver for a few days or a week so you can give them a vacation of sorts.
Talk with a geriatric care manager. GCMs are senior and elder advocates commonly educated in gerontology, social work, nursing, or psychology. They can help a family plan and adjust a care schedule when the time comes, and cope with other aspects of the experience.
The National Association of Professional Geriatric Care Managers is now the Aging Life Care Association, and its website is located at aginglifecare.org.
1 – pdf.org/en/parkinson_statistics [11/4/15]
3 – alznyc.org/nyc/newsletter/fall2012/06.asp [10/1/12]
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