Lewy Body Dementia Living Beyond Diagnosis LBD is a complex type of dementia that causes fluctuations in cognition, visual hallucinations, delusions, Parkinson-like symptoms, sleep issues, including REM Behavior Disorder, and medication sensitivities.
This website has been created out of a deep love that I had for patients in my pharmacy practice, families, care partners, and others. My prayer is that with me having a strong foundation in faith as a result of having two Christian parents, having a Mom and Dad with dementia and now with my diagnosis of Lewy body dementia that I will be able to offer insights from multiple perspectives as it relates to dementia. The resources that are provided should help persons with dementia, families, care partners, and others have a better understanding of what it is like to live with dementia and how to care for those living with dementia. I have a deep passion for better education and understanding for care partners.
As you visit this website, you will be coming into my world of living with Lewy body dementia (LBD). My goal is to transparently share my experiences with this horrific disease. I will share the good, the not so good and the ugly in my personal blog. In my faith blog, I will share how my faith has been my foundation and helped me the most in living with LBD. There may be things that I write about that you might think are impossible and things that you do not agree with; but, remember you have come into my world with LBD.
June 2012, I received a diagnosis of dementia with Lewy bodies (LBD). Actually, this gave me peace of mind because I had visited 7 previous physicians and had not received a diagnosis and treatment that was bringing closure for me in regards to the health issues I was experiencing. The peace that I felt was so great that I told my wife 10 minutes after diagnosis, "It is what it is and everything will be OK"
Soon after diagnosis though I begin to think about a patient of mine in my independently owned pharmacy who died with LBD. I thought about the problems and difficulties that he and his family experienced as it related to his diagnosis. It seemed as though my death sentence had been issued. My thoughts were that my life seemed like that of a convicted murderer. A physician had entered the charges against me, a trial had taken place, I had been found guilty and a judge had announced the sentence -- without appeal. During my initial research on LBD, I found reports of persons living from two to twenty years after diagnosis.
These statistics were not encouraging. I decided, however, that I was not a statistic. I acknowledged that I was a human being; born through a miraculous process and created by God with certain inalienable rights. My decision to live and outdistanced the statistics was one of my God-given rights. The decision did not mean that I would not have battles, trials and tribulations along the way.
Maintaining the desire to live has been a struggle at times. As I face the many struggles, I rely on my faith in God. One of my favorite verses of scripture has been a constant source of encouragement to me knowing that I do not travel this journey alone. Phillippians 4:19, "And my God will meet all your needs according to the riches of His glory in Christ Jesus". Also, my wife and entire family are with me every step of the way.
My choice to live with LBD well, drove me into dementia awareness and advocacy. I wanted others to know that there was life after a diagnosis. Realizing there was very little information that chronologically sets forth someones path with LBD, I wanted to share mine with the prayer and hope that others with LBD and their care partners might receive benefit.
I wanted others to know there was no stigma in having dementia. I dream for the time when there will be no stigma in having dementia. I dream for a cure of dementia. I dream of persons with dementia being better educated about their disease. I dream of better education for care partners. I dream for better education and understanding about dementia for family and friends. I dream of memory cafes in every town and city. I dream of dementia friendly businesses so that persons with dementia will not isolate because of how that might be talked to.
Individuals with dementia can still do a lot of things. We all need to be getting this message across. We just have to accept our diagnosis, find our new purpose and develop strategies of living with our disease well.
There is a lot of work to do in dementia advocacy and helping others understand there is life after diagnosis.