Thank you for your insight. I am hearing impaired (worn hearing aids since 4) and I understand being ashamed/embarrassed. With LBD, it is so different, with symptom severity constantly changing. It's clear cut to diagnose hearing loss while LBD and related things are very difficult to diagnose and treat.

Most people who ask me "what's wrong?" I think want to help. Its just hard because I want to protect my husband's dignity but at the same time, I am trying to figure out how to be a LBD caregiver and I could very much use help from friends and family.

I was mercilessly bullied in school for my deafness and my husband and I don't care what strangers say about either of us. We have helped countless friends and family who dealt with cancer, AD, ALS, suicide, cerebral palsy and many other conditions. When doing so, it was certainly helpful to understand the situation so we could help in the most meaningful ways and to know what to expect down the road.

LBD is really tough to explain. I was just wanting to know how others might have explained to caring friends and family who want to help but don't understand what LBD is.

My daughter, 15, suggested saying "he has a neurological condition. Thank you for your concern." - for close friends and family, not strangers or casual acquaintances.

It is a tough subject, it is very helpful joining this group because your experience and comments help in navigating this journey with grace.

Every day I pray a cure is found.