SALEM — He has lived with Lewy body dementia since 2016 and now Southern Essex Register of Deeds John L. O’Brien Jr. wants to educate as many people as he can about the disease.
O’Brien, a Lynn resident, and Lewy body caregivers advocate Lois Harvey are hosting an informational discussion on Lewy body on Tuesday, July 9, 2-4 p.m., in Shetland Park, 45 Congress St., Salem, where the registry is located.
Dr. Stephen Gomperts will discuss the Lewy body study laboratory he oversees at Massachusetts General Hospital and make a presentation on the disease.
Elected register in 1976 and charged with processing and recording property sales and purchases, O’Brien talked with his wife, Susan, and daughter, Ashley, in 2016 before publicly revealing his Lewy body dementia diagnosis.
“I know first-hand that there should be no stigma associated with this disease. My personal experience is that people have been kind, understanding and helpful to me and I am deeply grateful. I am living proof one can lead a rich and full life while living with this diagnosis,” O’Brien said.
Harvey and O’Brien said the July 9 forum will focus on best care practices for people diagnosed with Lewy body and their caregivers and discuss medication problems. The forum will include specific information about emergency care; veterans’ needs, and written information in Spanish will be available.
Harvey, a Salem resident, started a Lewy body caregivers group in 2017 two years after longtime partner, Donald Ricketts, died from the complications associated with Lewy body.
A mathematician and acoustics technology expert, Ricketts dove into learning about Lewy body following his 2007 diagnosis. Harvey took the same approach to studying how to become a caregiver to someone with the disease.
“I went to meetings and learned about how to care for Don. I found out I could do a lot,” she said.
Harvey said Ricketts’ condition included bouts of hallucinations and sensitivity to medications, and experiences she described as a “disconnect from the visual.”
“This is a terminal illness. It’s not going to end happily,” she said.
She credited O’Brien with his interest in learning all he can about providing emergency care for Lewy body patients and passing information on to people diagnosed with the disease and their caregivers. She said it is important for first responders, including police officers, to learn about Lewy body and the inability of people diagnosed with the disease to obey commands in certain situations.
O’Brien described the July 9 forum as “another tool to help make the public aware of this dreadful disease.”
“Public awareness is critical, these neurological disorders are becoming an epidemic in our country and I have grave concerns that we are not fully prepared to handle the consequences of them down the road. I feel strongly that as a nation we need to do more,” said O’Brien.
For more information on the July 9 forum, email Harvey at [email protected].