I would love to introduce you to two of my favorite people, my friend Mike Belleville and his wife Cheryl Belleville (in the picture above). Mike was diagnosed 8 years ago at the age of 52 with Lewy Body Dementia. Now, at 60 years old, he explains how he lives by his favorite quote, “get busy living or get busy dying.” Mike is a national speaker, advocate and serves on the Advisory Board for the Dementia Action Alliance. His resume of his advocacy efforts is long enough for an additional blog article.
Lewy Body Dementia or LBD is often misdiagnosed and presumed to be a mental health disorder or Alzheimer’s Disease. Alzheimer’s Disease is the most prevalent of the major neurological disorders; however, Lewy Body Dementia falls in third most common after Vascular Dementia. Frederich Lewy is the neurologist who discovered the abnormal deposits of alpha-synuclein protein forming clusters, which were named Lewy bodies. Lewy bodies disrupt the nerve cells’ attempt to communicate with other nerve cells. Over time, the death of the brain cell occurs. The average age of onset of this disease is between 50 and 60 years old.
The hallmark symptom of LBD is hallucinations. Hallucinations are false sensory perceptions. The most common are well-formed visual hallucinations, such as seeing animals, insects, or people. Delusions occur which are misperceived thoughts that then may become misperceived threats. He explains his most recent experience with a false belief in an article he wrote for the Dementia Action Alliance.
Mike provides a small glimpse into his life. He is a huge inspiration for anyone diagnosed with a dementia disease. The hope he offers to people with dementia and their families is a gift. Mike is not only facing his own diagnosis of Lewy Body Dementia but his Mother’s diagnosis of Alzheimer’s Disease. He explains the celebration of his Mom’s 84th birthday party which brought about a very painful reality. Alzheimer’s disease is robbing his Mom of the ability to recognize family members in the pictures being displayed during the party. As Mike recalls, “she did not recognize anyone, including her own mother.”
One of the most important messages Mike writes about is living in the moment. Dementia Grief is such a long and ambiguous process that worrying about tomorrow, steals our opportunity to create moments of joy today.
Lewy Body Dementia along with all the major neurocognitive disorders has no cure and is progressive. Mike is faced with the reality of this disease every day. He chooses to “get busy living” and encourages this for all who are diagnosed with dementia. He also promotes this adopted mindset for all family members of people with dementia. The person is still the person.
A person is not defined by a diagnosis of dementia. A person is defined by their personality, history, experience, attributes, abilities, talents, interests, and preferences. A person deserves respect, dignity, love, as well as the opportunity to love, live a purposeful life, and make meaningful connections.
Although Mike acknowledges his struggles, his attempt to live each day in the moment is a lesson for all of us. Especially those who have a diagnosis of dementia and the families who love them. Thank you, Mike. I am a better person, educator, and consultant because of you.
