by Janet Edmunson
Occasionally, someone originally diagnosed with Parkinson’s may later have the diagnosis changed to one of the atypical Parkinsonian disorders. These include progressive supranuclear palsy (PSP), corticobasal degeneration (CBD), multiple system atrophy (MSA) and Lewy Body Dementia (LBD). While each of these have some movement and non-movement symptoms similar to Parkinson’s disease (PD), they also have other distinctive symptoms that are difficult to manage and deal with for the person affected and the caregiver. In addition, PSP, CBD and MSA progress much more quickly than PD and LBD.
Since their needs are unique, Barby Johnson and I started an atypical Parkinson’s support group here in Maine over 10 years ago. Barby’s husband died of PSP and mine of CBD.
Our group meets four times a year in Falmouth on Sundays from 1 p.m. to 3 p.m. During the meeting we usually go around the room and allow every family to discuss what’s been happening since the last meeting and bring up any issues and concerns they are facing. The group has a positive attitude and addresses issues in a supportive, uplifting way.
If you are dealing with one of these diseases, we’d love to have you join us. You can email or call us to get information on the dates of our upcoming meetings as well as directions to our meeting location in the MaineHealth Learning Center at 5 Bucknam Road in Falmouth.
–Janet Edmunson (207) 799-4963 or janet@janetedmunson.com
–Barby Johnson (207) 633-0881
