Writing About Lewy Body Dementia

As a young girl I wrote stories, poems, and even a screenplay that my sisters and a friend put on one summer in our back yard. Middi Money Goes to Hollywood was a smashing success with the audience of birds, squirrels, and bugs. Stories just seem to be a big part of my life.


I see stories in the people, places and activities that populate my daily life. I love to take something that happened and make a great story out of it. Thankfully, I seem to have a plethora of instances that make amusing stories. Sometimes, okay, most of the time, I embellish and expound to really give the story punch. The basic story is true; it just has been given a touch of my own brand of spice. It has always been a given in my mind that someday I would take a story and write a fiction book. Hopefully, a best seller.

As I write this blog entry I am contemplating how to move forward on the book proposal I am working on. The story that is the basis of this book is a true story; it is not fiction, I cannot add spice to it and I truly wish I were not in a position to write it. It is a horrendous story of how a disease has stolen my mother from me, while she continues to live.

Mom has Lewy Body Dementia (LBD.) In the last year it has become part of my purpose to expose more people to this disease. In that vein, I have added a page to my website about it and I write my book. Please visit the Lewy Body Dementia page to learn more about the disease.

When the diagnosis first came I and my family began to look for information and resources. There were few. Many have never heard of LBD; I have worked in the medical field for 20 years and had never heard of it. In my search for information I did find the Lewy Body Dementia Association web site.

Every week I speak with people all over the country as a volunteer with the Lewy Body Dementia Association. This is emotionally hard, but I do it because I am in their shoes. I know the feeling of us being all alone in our journey through this time.

A few weeks ago I had calls that represented the full spectrum of LBD. I talked to one lady whose husband had just been diagnosed the previous week. The neurologist had very little practical information to pass along. The caller's husband is in his early 60s, still young and yet facing an uncertain future. The only certain thing about LBD is that it is currently incurable and it will get much worse before death.

I then fielded a call from a sweet lady in her 80s. Her husband had been living with LBD for a decade and he was "on death's door." She was making arrangements and wanted to find out how to donate to the association and to find out about donating his brain for LBD research.

I offered what I could to these people. Often, just talking with someone who understands is comfort enough.

I know that my writing about this situation isn't easy for my family members. I don't do this to cause discomfort. I do this because I believe strongly in doing what I can to make a difference in the battle against this enemy. The weapon I have been given is the ability to write. And so I write in hopes that someday we will experience victory. In hopes that in the future we will know enough about this disease to offer more than just compassion.