Recently, I attended a presentation about Parkinson’s disease for volunteers at Hospice of Santa Barbara from the president of the local chapter of the national Parkinson’s organization (Santa Barbara Parkinson’s Association, whose husband has Parkinson’s. One of the volunteers at Hospice also spoke about her experience with a client with Parkinson’s. According to the National Institute of Health Parkinson’s Disease: Causes, Symptoms, and Treatments | National Institute on Aging (nih.gov), Parkinson’s is a neurodegenerative disease that affects dopamine-producing neurons in a part of the brain that controls movement. For reasons we don’t yet understand, these cells stop producing dopamine and often die. In addition, there is a loss of nerve endings that produce norepinephrine. This hormone makes the body more conducive to active movement and controls digestive movement, heart rate, and blood pressure. This can cause increased wear and tear. So, less norepinephrine, more wear and tear.
There is no current cure for Parkinson’s, though several medications can control the symptoms (What is Parkinson’s? | Parkinson’s Foundation). Over a million people in the U.S. have been diagnosed with this disease, including 3 out of every 100 people over 60. There is some evidence that some inherit it. Onset before age 40 is uncommon but associated with a longer, smoother course of illness. Problems like memory loss, confusion, and difficulties with balance are less likely when early onset occurs. WebMD (https://www.webmd.com/parkinsons-disease/parkinsons-overview) points out that with proper treatment, most people can live an enjoyable, fulfilling life despite Parkinson’s.
The earliest symptom may be a slight tremor of the hand or legs, stiffness, and rigidity of the muscles. Eventually, it results in impaired posture and loss of automatic movements like blinking or swinging the arms when walking. In addition, patients develop an odd gait characterized by small, quick steps and may lose their sense of smell. Constipation, depression, pain, and sleep issues can also show up early in the progress of the illness.
Eventually, speech may become soft or slurred, making writing a challenge. In later stages, the patient may even freeze in place. Low dopamine levels seem to be the reason for these motor symptoms, while decreased production of norepinephrine leads to fatigue, anxiety, and, eventually, depression. People with Parkinson’s are almost entirely unable to multi-task, especially if they are rushing.
Over the years, clumps of Lewy bodies appear in brain cells. These bodies are full of proteins that won’t break down, although no one knows why they don’t. Lewy bodies are associated with dementia. Dementia is likely in late-stage Parkinson’s, but progression varies significantly from person to person, not just in terms of symptoms and rate of progression but also in how well medications work and how people experience side effects.
WebMD (https://www.webmd.com/parkinsons-disease/parkinsons-overview) outlines three stages of progression, though not everyone fits into these categories. In mild-stage Parkinson’s, symptoms may be irritating, but they won’t stop a person from doing most tasks, and drugs work well to keep symptoms in check. A person’s arms may not swing when they walk, and their face may be rather expressionless, but that is not because they are not feeling anything but because the muscles of the face have become stiff and rigid. Posture may be somewhat stooped; legs feel heavy and still, and symptoms may be worse on one side of the body than the other.
In the moderate stage, often within 3-7 years, there are changes in the voice, freezing when the patient tries to start walking or change direction, trouble swallowing, trouble with balance and coordination, leading to more falls, and the shuffling gait mentioned above.
Advanced-stage Parkinson’s may emerge if the medication doesn’t help. In the advanced stage, people are most often limited to a bed or a wheelchair, have severe posture issues, and need help with everyday tasks. At this stage, patients cannot live on their own.
As you might imagine, all of this can cause the patient bouts of anxiety and disorientation. It can be hard to figure out how to help, especially if the caretaker is also anxious. For example, a person with Parkinson’s \ can find themselves unable to turn around in a small space, making them frustrated and worried about what it means to exhibit this symptom. One quick suggestion from the presenters was to sing to get the patient to sing. Sometimes, singing can reduce anxiety (think about the phrase “whistling in the dark”). Anything that distracts someone and makes them laugh is a huge help, bad singing included.
Our presenters have personal experience with people who have had Parkinson’s for many years. They informed us that every day is different. Parkinson’s is found more often in men than women, though women usually seek care earlier than men. Parkinson’s may express itself in as small a sign as a tremor in one finger. Seeking treatment can create the opportunity to have a good quality of life. Treatments range from exercise and diet to dopamine injections.
The most commonly used medication is levodopa, a dopamine replacement combined with carbidopa (which prevents some of the side effects of levodopa). MAO-B and COMT inhibitors can increase the amount of dopamine by slowing down the enzymes that break down dopamine. Some medications reduce involuntary movements, tremors, and muscle rigidity. If people do not respond to prescriptions, deep brain stimulation using a device implanted in the chest may be helpful with motor symptoms, although it is not yet widely available. In this area, UCLA and USC offer this type of treatment.
Other newer medical interventions include focused ultrasound, which uses high-frequency sound waves to destroy specific areas in the brain that cause abnormal body movement. In addition, Pallidotomy surgery eliminates the globus pallidus and can ease rigidity and tremors and make it easier to move around.
Beyond medical attention, several practices can improve functioning. Exercise, including aerobic activity, strength training, and stretching, is the single best thing a person with Parkinson’s can do to slow the progress of the disease. Physical, occupational, and speech therapy can help with speech, gait, and tremors (though not necessarily in that order). A healthy diet and practices that increase balance, flexibility, and coordination, like Yoga and tai chi, are essential.
There are ways to prevent falls, like removing all loose wires and cords and throw rugs and clutter. Grab bars in the tub or shower, and nonskid bathmats on the bathroom floor are a must. Good lighting at night is helpful, along with making sure that stairs have good tread and rails, especially since people with Parkinson’s should not wear rubber or gripping soled shoes that catch on the floor and cause tripping. Often a cane, walking stick, or walker may be helpful.
Of course, there is no substitute for good caretaking. A caretaker has to be flexible about schedule and activities but consistent about medication and other treatments. Caretakers must also be careful to take care of themselves. Just a walk or going out to coffee with friends can be critical. Respite breaks are essential; hospice volunteers can help provide a break, a sounding board, and emotional support for caregivers and patients.