Parkinson’s Disease Awareness Month: How Social Workers Can Help With Building the Care Team
by Corlynn Hullfish, LCSW
Learning that you have a chronic, long term, debilitating illness can be devastating. For many patients, the news can also be overwhelming, causing them to be unable to look past the immediate crisis. In the case of Parkinson’s disease, there is of course the fear of the future symptoms of the disease. These include falling, tremors, stiffness, slowness, involuntary movements, and sometimes hallucinations and memory problems. Parkinson’s causes these problems as a result of brain cells ceasing to produce the neurotransmitter dopamine. The diagnosis can be very distressing, but is also cause for hope.
April is Parkinson’s Disease (PD) Awareness Month. For social workers who work with this population, it is our job to assist people with PD to find resources in their area to help educate them about their disease, where to find medical care, and how to form a care team. Parkinson’s disease is a disease that we can fight, especially in terms of slowing the progression and increasing quality of life.
The first step toward doing so is to build the patient’s care team. Ideally, this team would first include a neurologist, preferably one who specializes in movement disorders like Parkinson’s disease. But direct medical care is only one part of the equation. People living with PD can also greatly benefit from rehab therapies, such as physical therapy, occupational therapy, and speech therapy, particularly those that are geared specifically toward the disease. Although there is no set diet recommended to people with Parkinson’s disease, they can benefit from working with a dietician to design a healthy diet that fits their energy needs and helps to ward off some of the gastric issues like constipation that are common in PD.
Linking patients to exercise programs in their area that are geared toward people with PD is also critical. Many movement disorder specialists will note that when you have Parkinson’s disease, exercise is just as important as taking medications in treating the disease. It is also the most important thing in slowing the progression of the disease and in improving quality of life. Finding a good local PD exercise program can also serve to link the patient to a community of others who are working hard at living well with the disease.
In addition to the physical challenges of Parkinson’s disease, there are many emotional and mental challenges. Depression and anxiety are common in PD, both as a symptom related to the loss of dopamine and as a result of struggling with the challenges of living with the disease. Adding a psychiatrist and a clinical social worker or other therapist to the care team can be helpful in managing these symptoms.
Finally, although not every person living with Parkinson’s disease will find a support group useful, many report that it helps to meet others with PD and know that they are not alone. This can be a safe place for them to discuss their fears about what the future might hold, to reassure others that their concerns are valid, to share tips for living well and working around the disease, and to find new ways of navigating through their new normal after their diagnosis.
Corlynn Hullfish completed her MSW at Rutgers, the State University of New Jersey. She is currently the social worker for the Cooper Neurological Institute and is partially sponsored by a grant from the Parkinson Council.
For more information on Parkinson's Disease, visit the Parkinson's Foundation website.