In memory of Flynn “Buddy” Murphy
January 1950 ~ January 2021
October is Lewy Body Dementia Awareness Month.
This is our LBD story.
Many LBD patients die as a result of falls or aspiration pneumonia. In his last year, Buddy suffered several falls and choking episodes. With respect for privacy of Buddy and the kids, I only shared small glimpses into his LBD journey. This exact month a few years ago he became very sick and was admitted to the hospital with sepsis due to aspiration pneumonia.
One of the things LBD steals is one’s ability to swallow properly. While in the hospital, he had a permanent feeding tube placed and came home from the hospital on Hospice care. He passed away three months later.
When Buddy died, we shared the “good” memories and photos. We felt like we could finally grieve the man we lost years ago. It was hard to see pictures of what the disease did to him. It became increasingly difficult in the months following his passing to look at those pictures of him.
In his illness, we often forgot who he was before the disease took ahold of him. Our strong and confident leader relied completely on us. We tried to maintain some normalcy and to make him happy and comfortable in his remaining time. But, we often felt lonely and isolated.
I joined several LBD forums and we discovered the Respite program. Soon the isolation faded and we began to feel less alone.
Helping others and bringing awareness to LBD are things that bring some healing. While the memories and pictures of what this horrific disease did to Buddy, they are important because they tell a real and powerful story.
*Facts About Lewy Body Dementia:
*It affects millions of seniors.
*LBD is not Alzheimer's disease.
*LBD is difficult to diagnose.
*Medications and LBD can have adverse interactions. *Parkinson's disease and LBD are very similar.
*LBD affects sleep quality.
*Like most dementias, LBD is unpredictable.
*LBD has no cure.
With an average lifespan after onset of 5 to 7 years, the progression of dementia with Lewy bodies is relentless; however, the rate of decline varies with each person. DLB does not follow a set pattern of stages as is seen in some other dementias. Crudely, Lewy bodies are abnormal clumps of protein that gather inside brain cells. In LBD they particularly like to congregate in the areas that are responsible for thought, movement, visual perception, sleep regulation and alertness.
Ultimately it is the friends and families of those with LBD who can take action, who can spread the word and who can support each other.
So many of those caring for people with dementia are isolated and exhausted.
“More research into LBD is needed. Is there a genetic predisposition or are environmental factors a cause? Are there triggers? What, if anything, can we do to keep it at bay? Its victims cannot hold a conversation let alone start a new one. The onus is on their families and friends. We don’t want to let them down.”
#LBDawareness
#lewybodydementia
