Alone at the shore
The seagulls were so confused
The waves were crying
I wrote this the first time I went to our beach house without my husband Brian.
Brian died November 25, 2024 after living for eight years with Lewy Body Dementia (LBD).
Despite it being the second most common form of progressive dementia, after Alzheimer’s, not many people are familiar with LBD. For all the data and evidence, people—including medical and health professionals—are only beginning to appreciate the range of dementias that families are experiencing. These differences matter—because medications and treatment, screening, diagnosis, and prevention, are not the same. But without more education, awareness, and a more accurate accounting, the incentive to innovate isn’t as robust as it should be.
How to motivate people—the public, the policymakers, the researchers and innovators—to pay attention and take an interest in LBD requires multi-faceted approaches. It is my thesis that the arts, broadly defined to include music, visual art(s), theater, dance, poetry and more, can breakthrough in ways that academic papers cannot. Sometimes, these issues need to move beyond the data. Having been my husband’s caregiver, advocate, and champion during his illness I know the power of music and the arts to not only improve his, mine, and our family’s well-being, but to educate others. I know the literature on music and the brain. I had the monumental privilege to serve on the board of the Institute for Music and Neurologic Function and meet, in person, Dr. Oliver Sacks and to collaborate with Dr. Concetta Tomaino.
My very first Health Dame interview was with Dr. Tomaino. You can view our conversation at the link below.
I wanted my first Health Dame newsletter to highlight the absolute importance of the arts and health care. Many academics and internationally acclaimed musicians and vocalists, have begun spreading the word.
Once I thought I knew where I was going to go
His disease changed that
Now I am alone
Trying hard to find my way
I am a bit lost
A map won’t help me
Guides would only derail me
I am my North Star
In my effort to learn how to move forward (not move on) after 40 wonderful years with Brian, I took selected poems I wrote during Brian’s illness and commissioned a piece of music that incorporated the poems and commissioned a painting that incorporates elements of my poetry, the music composition, and other meaningful symbols. The music, composed by Octavio Vazquez premiered in Washington DC February 11, 2025. It was performed by the American String Quartet and the artwork by Daniel A. Foley Cordero was unveiled.
The music, the art, the initiative is called North Star.
We had a panel discussion to go beyond the data and share information about Lewy Body Dementia—through music, art, and personal experience. I am currently serving on the board of the Lewy Body Dementia Resource Center and want to thank both Norma Loeb and Mary Lou Falcone for their tireless work in this field generally, as well as their help and involvement with North Star. You can learn more about the North Star program on the Health Dame website.
This is the heart and soul of Health Dame: bringing together experts, from multi-disciplinary fields, to work together to solve problems so people can find a way to live their best life. You can see all the interviews here: www.healthdame.com.
-Robin
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