Letter from Robert Bowles

Below is a post from new DAI member Robert Bowles to Dr. Sanja Gupta CNN page. Thank you Robert for your permission to publish your communication to Dr Gupta as our blog this week.

Robert posted on the Forget Me Not Dementia Support Facebook page:

“I have challenged him to utilize some suggested resources to produce a more inclusive and factual explanation of LBD and the path of LBD. I encourage you to visit https://www.facebook.com/pag…/DrSanjay-Gupta/117263381701271 and respond with “Like” and/or make a comments. This is an opportunity to demonstrate to CNN that LBD and other dementia need to be better understood.

I have reviewed much of the media coverage of the autopsy findings in the death of Robin Williams.

I was diagnosed with Lewy body dementia (LBD) in June 2012. My diagnosis was preceded by 18 months of a downward spiral that included being evaluated by 8 different doctors. At the time of my diagnosis, I was sleeping 12 to 20 hours a day. My wife would have to tell me that it was time to eat. I was experiencing almost every symptom listed on the Lewy Body Dementia Association (LBDA) website.

I express my sympathy to the loved ones of Robin Williams in their tragic loss from such a horrific disease. Sometime out of tragedy comes light. Robin’s death has created light in the awareness of LBD. Televisions have bee filled with information about the tragic loss of Robin and information about LBD. I have been appalled at some of the things that have been spoken by some reporters.

I witnessed some physicians that were interviewed by national news give a reasonable explanation of LBD. There were others that provided poor explanations of this disease. Many of the core diagnostic features of LBD were missed in most every interview I reviewed.

A physician who provided on the of most accurate pathology descriptions of LBD made a tragic statement at the conclusion of his report. The physician stated diagnosis was possible with some diseases, but there were no treatments. He was asked if he would want to be told he had one of these diseases. His response was NO because hearing this would tend to increase anxiety in the one being diagnosed and strip “hope” away from the individual.

I literally got nauseated when I heard the statement about “hope” being stripped away. I have many conversation every week with people living with dementia. They are part of my life-blood. AS I talk with them, all too often I hear them say the doctor gave me a prescription for Aricept and told me to come back in six months. Rarely are non-medication options and opportunities presented to the patient.

There has been a lot of media coverage about the death of a celebrity. I grieve for this family and thankful for their desire for others to have a better understanding of LBD. Early diagnosis of LBD is important because of medication sensitivities that may occur.

I am thankful that I was able to find there was life after a diagnosis of LBD. With a positive attitude and other resources, I was able to find my new purpose in life. Finding this purpose has given me a reasonable quality of life for someone with LBD.

The Lewy Body Dementia Association provides a wealth of knowledge about this disease. Physicians serving on the LBDA scientific advisory council provide outstanding understanding of this disease. I am available to share my journey and the choices that I have made which have enabled me to have a reasonable quality of life for someone with LBD. This would likely not have been possible without my early diagnosis. I encourage you to utilize these resources to provide a comprehensive understanding of this disease.

Will you be a beacon of light to others by helping them understand there is life after a diagnosis of LBD?”

Copyright: Robert Bowles

Editor: Kate Swaffer