Lillian O’Connor – Finding Strength While Living with LBD

Lillian O’Connor was a churchgoing, avid reader. Prior to she and her husband downsizing, her home was filled with books. She now carries her Kindle wherever she goes and remains active in church as the Emeritus of one of its community programs. Lillian provides guidance now that she is unable to lead the program.

These days, she stays connected through online platforms. She does not drive due to her diagnosis and her husband is legally blind, limiting her access to support. She participates in an online Lewy support group where she shares her experiences while gaining support from the community.

Like many who have experienced LBD, she was originally diagnosed with Alzheimer’s – a diagnosis she would live with for three years. During a doctor’s visit, she was referred to a neurologist in Staten Island. After just six weeks of testing, she received a diagnosis of LBD in March of 2018. The term “Lewy body dementia” was unknown to her. Her husband’s caregiver assisted Lillian in finding information and resources on the disease.

Looking back, she believes family members that were diagnosed with other forms of dementia may have actually had LBD due to some of its more signature symptoms being present, particularly hallucinations.

Other family members were in shock at her diagnosis including her son. He urged her to get a second opinion, but Lillian felt a sense of peace finally knowing what was affecting her.

Her friends and social life were affected as well. Many friends and acquaintances do not fully understand LBD and she often has to request they slow their speech. She will sometimes pause during conversation to absorb what was said and conversations must be in intimate settings for her to fully grasp what was said.

Lillian wants those living with LBD to not be ashamed of their diagnosis nor the impact it may have on the relationships they share with friends.

She says, “[those with LBD] will lose friends and face rejection, but those friends were not meant to be.”

Since so many people are being misdiagnosed, Lillian has made arrangements to donate her brain to research and encourages those living with LBD to do the same. If you are interested in donating your brain, please click the link here.