What was your first Reaction when you got your Diagnosis? Show your support by Commenting!
I remember being told I had Lewy Body Dementia. After exhaustive testing, a Dr. came into the room where my wife and I were seated. She sat down, held my hands, looked me square in the eyes and said, “my suspicion was correct, you have Lewy Body Dementia.” She sat there for about ten seconds and then stood up and left the room.
Read more: Open Discussion on Dementia
Since then we have had much better experiences with my physicians. But the beginning was a scary, rocky and lonely road. Our information came from websites that gave me an immediate death sentence. No hope and no future.
I had a nervous breakdown and ended up in a mental health ward. There I met a Psychiatrist that took the time to explain the disease to my wife and me. She gave me contact information to various Associations, and to local support groups.
Today I am fighting the disease tooth and nail. I stay physically and mentally active. I participate in several support groups and I work hand in hand with my Doctors. I refuse to let this disease defeat me.
Education, both for the patient and all medical and personal caregivers, is essential. Talking to others who have this disease, receiving support from family and friends. These are needed to help the patient succeed. There are many trials and tribulations along this path, but that is a story for another time.