How Do I Build a Parkinson’ s Care Team?
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Building a care team is crucial. This care team is, of course, primarily for your loved one— but they are there for you as well. Get clear about who is, or should be, on your care team and what their role is. That makes it easier to know where to turn when different symptoms and situations arise.
Everyone with Parkinson’ s should ideally see a Parkinson’ s doctor( a movement disorder specialist). If none are available in your area, find a general neurologist who has experience with Parkinson’ s and consider visiting a specialist once a year( or more, virtually) if possible.
Outside of your Parkinson’ s doctor, your team may include:
+ Advanced practice providers, like a nurse practitioner or physician assistant, who partners with your doctor on your Parkinson’ s care.
+ Allied health care providers, like a physical, occupational or speech and swallowing therapist who treats walking, balance or speech and swallowing symptoms.
+ A social worker, who helps with care partner support, care in and out of the home, community resources, insurance issues and medication costs and long-term planning.
+ A mental health therapist or counselor who provides talk therapy and emotional support.
+ A primary care, internal medicine or geriatric physician, who manages general medical care and care for conditions outside of Parkinson’ s.
+ Other physicians with expertise in sleep, mood changes, constipation, urinary or sexual problems and other non-motor symptoms of Parkinson’ s, as well as those who treat conditions outside of Parkinson’ s( like a cardiologist for heart disease).
PPMI participant Yvette Larrieu with Neha Prakash, MBBS, a movement disorder neurologist at the Institute for Neurodegenerative Disorders in New Haven, Connecticut.
+ A pharmacist, who can answer questions about medication dosing or interactions, ensure safe use of prescription and over-the-counter drugs and help navigate medication costs and complex medication regimens.
+ A palliative care team that offers additional symptom and emotional support for both the person with Parkinson’ s and the care partner, and can help with later life planning.( Palliative care is available from diagnosis and throughout the disease; it’ s not just for end of life, and it’ s not just hospice.)
As Parkinson’ s evolves, your loved one’ s health care team should evolve, too. While your Parkinson’ s doctor and core team remain, you will likely call on other providers at different points: Your loved one might see a physical therapist at diagnosis and then once or twice a year for check-ins( or more frequently if there are balance problems or falls), a mental health doctor( like a psychiatrist) if mood changes develop or persist, or a palliative care team if both you and your health care team need more support in easing Parkinson’ s symptoms or burdens.
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