April is Parkinson’s Awareness Month, a national campaign approved by the United States Senate in 2010, designed to bring awareness to the disease and the ongoing fight to fund research and support for caregivers and patients. The Parkinson’s Disease Foundation estimates that nearly one million Americans are currently living with Parkinson’s disease, with almost 60,000 new patients receiving diagnoses each year. Neither of these numbers include the patients who are misdiagnosed or undetected, and so the estimate is that as many as 10 million people around the world are living with Parkinson’s today. While the likelihood of a Parkinson’s disease (PD) diagnosis increases with age, four percent of new cases occur in people under 50, with men 1 ½ times more likely to have PD than women. Parkinson’s is expensive for both caregivers and patients, as the estimated direct and indirect costs of treatment, social security payments and lost income is nearly $25 billion each year, just in the United States. A single PD patient can spend $2500 each year on medication alone, and surgery can cost another $100,000. Caregivers, loved ones and homecare companions who are living with Parkinson’s disease know the emotional, physical and financial toll this disease can take.
Diagnosing PD accurately can be difficult, because the symptoms can mimic other conditions, including something called Parkinsonism, which is like but is not exactly Parkinson’s. True Parkinson’s disease (PD) is a chronic and progressive movement disorder whose symptoms develop and worsen as time passes. PD’s cause is unknown, and there is presently no cure, although treatment options include medication and surgery to manage symptoms. In a patient with PD, vital nerve cells in the brain, called neurons, malfunction and die. As they die, some these neurons produce the chemical dopamine, sending messages to the part of the brain that controls coordination and movement. As the course of the disease progresses, the amount of dopamine the brain can produce decreases, which leaves the patient unable to control movement normally. There are also dopamine cells in the intestines that degenerate in Parkinson’s patients, which may contribute to the gastrointestinal symptoms that are part of the disease. While the specific symptoms that a patient experiences can vary, the main motor signs of Parkinson’s disease include:
- tremor of the face, jaw, arms, hands and legs
- bradykinesia or slowness of movement
- stiffness or rigidity of the limbs and torso
- impaired balance and coordination or postural instability
Scientists have also discovered that the characteristic sign of Parkinson’s disease — clusters of the protein alpha-synuclein, also called Lewy Bodies — are found not only in the mid-brain but also in the brain stem and the olfactory bulb. These other parts of the brain link to sleep regulation and sense of smell, and Lewy bodies’ presence there could explain some symptoms some people with PD experience long before any motor sign of the disease manifests. The current medical theory on the cause of Parkinson’s disease lies somewhere in the enteric nervous system and the medulla, within which the olfactory bulb controls sense of smell. Recent evidence is that non-motor symptoms like losing of sense of smell, constipation, and sleep disorders may precede the physical (motor) symptoms of the disease by several years.
Caregiving for a Parkinson’s patient has special challenges. Like other progressive diseases, the severity and even occurrence of PD symptoms can vary from day to day, and within the same day. Caregivers must employ their skill and patience knowing when to offer help, and when to wait for the loved one to do the task independently. PD’s many symptoms, medication regimens, and subtle changes in mood and motor function make education and endurance key requirements for the caregiver. Most difficult of all, the Parkinson’s patient may not be fully aware of how their abilities, risks and impairments have changed.
There are many resources available to San Diego caregivers, loved ones and homecare companions working with with a Parkinson’s disease diagnosis. The National Parkinson Foundation has a ‘Find Resources In Your Community’ page that will help you find a PD expert in one of San Diego’s many excellent hospitals. The Parkinson’s Disease Foundation has a ‘Find Resources’ page that will let you research the disease, or find local organizations in your state that support Parkinson’s disease research or caregiving. The Michael J. Fox Foundation, created by the most famous Parkinson’s disease patient today, the actor Michael J. Fox, has a very informative website full of information for patients, researchers, and potential donors. San Diego is home to one of the most cutting-edge medical communities in the world, but as always, the best care starts in the home.