Adam Margolias, MD, a movement disorders specialist at Cleveland Clinic, helps lead a multidisciplinary clinic for people with advanced Parkinson’s and palliative care needs. He shares how honesty with care teams and support groups helps normalize stigmatized symptoms and improves quality of life.
Transcript
I think it’s very common for a patient or caregiver to be hesitant about sharing symptoms they might perceive as embarrassing.
Generally, your Parkinson’s neurologist is part of your care team, and they are looking out for your best interests. They’ve heard it all before—you’re not the first patient with Parkinson’s they’ve seen.
Parkinson’s can cause some unusual symptoms, and some carry more social stigma than others. But the best way to treat those symptoms starts with letting your team members know.
If you’re the patient, share information with your caregiver, and then when you go in for a doctor’s appointment, be frank and honest. That openness will help the doctor find ways to support your quality of life and treatment.
Support groups for Parkinson’s can also be very helpful. In attending these meetings, you often find that symptoms you thought were rare are actually quite common, and many other people are experiencing them too.
That can bring a sense of normalization and reassurance to feelings or symptoms that might otherwise make you feel isolated.
