Four Tips for Living Well with Lewy Body Dementia

Editor’s Note: October is Lewy Body Disease Awareness Month. To better understand this complex and often misdiagnosed disease, we asked someone living with LBD to share his perspective as well as tips for living well.

Lewy Body Disease (LBD) is often referred to as a disease of many faces. It is often misdiagnosed yet it is the second most common cause of progressive dementia after Alzheimer’s disease. In fact, 1.4 million Americans are affected.

Sometimes it is a called a roller coaster ride because of the highs and lows that might take place. This is because Lewy Body disease is a progressive brain disorder in which Lewy bodies build up in areas of the brain that regulate behavior, cognition and movement. I know the roller coaster to be true because I’ve been living with the disease for 15 months.

After having a difficult day a year or two ago, I wrote a blog about Six Brains in One Day. This blog explores six different emotions I experienced all in one day. That day I felt slowness, cheerfulness, laughter, along with emotions I refer to as tired brain, sizzling brain and fried brain.  Once I hit fried brain, there was nothing left to do but rest.

In honor of Lewy Body Dementia Awareness Month, I want to offer four tips for living well with the disease. Depression and anxiety are common in people living with the disease. Amidst our feelings of loneliness, helplessness and boredom, there is a path forward.

The catalyst for my path forward was to NOT let LBD define me. I am still Robert. In order to do this, there were several things I needed to focus on. Initially, I needed to ACCEPT my diagnosis unconditionally. That meant that I had to accept my diagnosis not only in my head but also my heart.

Secondly is SOCIALIZATION. Socialization is a lifeline. It’s easy for us to focus on losing friends and when no one seems to be concerned about what we’re going through. I found Virtual Memory Care Cafes through Dementia Mentors and it helped me reconnect. This site allows people living with dementia to connect with others right from the comfort of your own home.   Through this site, you can even ask for a mentor that is living with the same form of dementia as you.

Thirdly is ATTITUDE. How is our attitude? Will you allow it to define who you are? When I was a practicing pharmacist, doctors told me that they had rather operate on a person with a positive attitude because better outcomes are achieved. The same is true in living with dementia.

Fourthly is PURPOSE. Each of us needs purpose in life to enhance our own wellbeing. Our purpose might still be the same as it was before our diagnosis. For me it was the same; loving, caring, educating, encouraging and giving hope to my patients in the pharmacy.

I’ve labeled these four things as ASAP². Why have I squared ASAP? Because all four pertain not only to the person living with dementia but also the care partner.

We must look at the big picture. We can’t just focus on our physical and medical needs, we need to nurture our psychological, social and spiritual needs a well.

Fifteen months after my diagnosis, I embraced ACCEPTANCE, SOCIALIZATION, ATTITUDE AND PURPOSE. I am no longer held hostage by a disease that has no cure. Now, I can live with peace, joy and happiness. My prayer and hope is that each of you find your own path forward too.