What My Sister and I Looked for in a Top Parkinson’s Center
How do I know that my family members are receiving the best care for their Parkinson’s disease (PD)? What criteria should I consider when choosing a disease management strategy?
Given my nursing background, I asked myself these questions when my sister, Bev, was diagnosed with PD in 2017. Fortunately, Bev, who was also a nurse, lived near Cleveland, Ohio, and I had grown up in that same suburb.
We were aware of the two medical center giants in Cleveland healthcare: the Cleveland Clinic and the University Hospitals Cleveland Medical Center. Before my move to sunny Arizona, I worked at both organizations’ cancer centers as the director of cancer communications and community outreach.
Gratefully, Bev was referred by her excellent primary care physician to the Cleveland Clinic’s Center for Neurological Restoration, which is dedicated to the medical and surgical management of movement disorders, including essential tremor, PD, and other neurological disorders. It is also designated as a Parkinson’s Foundation Center of Excellence.
This designation means that the medical center has a specialized team of neurologists, movement disorder specialists, physical and occupational therapists, mental health professionals, and others who are current on the latest PD medications, treatments, and research to provide the best possible care for individuals with PD.
Bev and I both knew that her diagnosis would require a team of skilled healthcare professionals working with Bev and her caregivers. We wanted to make sure that the team specialized in PD and other movement disorders versus general therapies for all diseases.
The Johns Hopkins Parkinson’s Disease and Movement Disorders Center recommends that a person’s PD healthcare team include a neurologist, occupational therapist, physical therapist, speech therapist, mental health provider, case manager/social worker, and others who will play a role when needed. Bev’s team at the Cleveland Clinic included all of these healthcare professionals.
Although Bev, her daughter, and I met with the PD team at the Cleveland Clinic, her “main man,” as she still calls him, is her neurologist, who seems to coordinate any and every kind of care she has needed since her diagnosis.
Bev, who now has stage 3 PD, continues to see her neurologist at the Cleveland Clinic, and adds other healthcare team members as needed. She has a physical therapist to improve her balance, gait, and strength, a speech therapist for some swallowing issues that have started over the past year, and an ophthalmologist to evaluate her vision and treat her dry eyes due to infrequent blinking. She is also on a low-dose antidepressant.
After dealing with Bev’s PD over the past four years, she and I can offer the following tips on what to look for in a top medical center:
- Make sure your team is available, capable, and open to questions from both patient and caregiver.
- Online chart information allows caregivers to view test results and check on doctors’ appointments. As a caregiver, it is helpful to know appointment times and dates, not only for transportation needs, but also to remind the patient. I have access to Bev’s online information (with her permission) from the Cleveland Clinic through MyChart. This keeps both of us up to date on her current PD status.
- It is critical for healthcare team members to provide understandable information, be compassionate, and demonstrate great listening skills.
Whether you’re an individual with Parkinson’s or a caregiver, we are in this together managing a progressive and sometimes challenging chronic disease. Don’t accept second best. Look for a top PD center. Stay informed. We’ve got this!
Note: Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Parkinson’s News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Parkinson’s disease.