I live with Lewy body dementia—and I refuse to be defined by my diagnosis. Through speaking and advocacy, I challenge stigma, change the narrative, and help create a world where every person is seen, heard, and validated.
My path to diagnosis was long and often isolating. At 47, I was diagnosed with mild cognitive impairment. At 52, I was told I had a neurodegenerative disease. At 54, I finally received the diagnosis of Lewy body dementia.
Along the way, I learned how easily a person can be reduced to symptoms, assumptions, or fear. I also learned the power of being truly seen, heard, and validated.
Today, I speak from lived experience to challenge stigma and shift the narrative about dementia. I advocate for language grounded in dignity, compassionate care, and the right of every person to keep living with purpose, connection, faith, identity, and hope.
I am not at the end of my story. I am living it—and helping others know they can live theirs, too.
This is more than a phrase. It is a way of meeting one another with dignity:
Seen — Recognize the whole person, not only the diagnosis.
Heard — Listen without rushing, correcting, or assuming.
Validated — Honor a person’s experience, even when it differs from your own.
Every encounter offers a choice: distance or connection. I choose connection.
We are all advocates. In the end, this work is about human connection, intimacy in all its forms, and respect.
Aging or changes in the brain do not erase our need for companionship, belonging, affection, consent, or meaningful intimate connection.
Each of us can help create a world where every person is seen, heard, and validated. Carry this message forward in the way you listen, speak, and stand alongside others.
If you would like to know more, I invite you to continue the conversation.