How I Met My Friend Lewy

My life changed in March 2023, when my neurologist asked my wife and me to research Lewy Body Dementia to see if what we found made sense with my symptoms.  That was when I was introduced to my new friend and now constant companion, Lewy.

At the time I had been experiencing some pretty significant cognitive decline over the previous 18-24 months. I had been in public education for over 25 years, serving as a classroom teacher, a building and district administrator, a university adjunct faculty and was then the executive director of a professional non-profit that serves all the superintendents in New Hampshire providing them with legislative advocacy, professional development, and other member services. I loved my job and the contributions I was able to make to help my colleagues and friends and to advocate for public education in our state. I had gathered all the alphabet soup after my name, including a doctorate in education, and prided myself on my ability to think creatively to solve complex problems, and to analyze difficult issues.

All of a sudden I was forgetting appointments, meetings, and names of people I just met. I was having a hard time making sense of what I was reading, and my attention span was becoming very limited. I was feeling depressed all the time, and completely apathetic toward my job, my family, and my own well-being.  There were times when I was unable to get out of bed because I simply didn't care.

 I was always a bit of a procrastinator, as we all can be at times I guess, but would always meet deadlines and get my work done - and done well. Now I was missing deadlines, forgetting tasks, or not understanding what I needed to do in order to accomplish a task or meet a goal.

I started seeing shadowy figures in the periphery, but when I turned to look they disappeared. I would hear footsteps behind me, but when I turned to look no one was there.

I attributed much of this to being tired or overly stressed out, and kept telling myself I needed to "snap out of it". No matter how much I prodded myself or told myself to get going or to pay better attention, the incidents kept piling up. 

I hesitated to tell my wife or anyone what I was going through, because I knew she would tell me to slow down or even to get done. I didn't want to lose my job, which I felt was the apex of my career. If I didn't have my work, who was I? 

I felt like everything was crumbling around me and that things were getting worse, but I tried to hide what was happening as best as I could. Everything came to a head in December 2022. I started falling a lot - almost every day. I had to use a cane to walk, and then a walker because I was so unstable. I developed a tremor in my right hand and my head would shake when I was agitated. 

I went to see my doctor in January, who placed me on medical leave and immediately had me return to see my neurologist, who began running a number of tests, including an MRI, a cognitive exam, a spinal tap, and LOTS of blood work. I believe she knew what was happening but needed to eliminate everything else.

When Michele and I met with my neurologist after all the tests, she began to tell us what had been eliminated. I did actually laugh out loud when she told us that I didn't have syphillus - which I didn't even realize I was even being tested for! I'm sure it was a big relief for Michele as well! 😂

It was good to have a moment of levity, because her next comment floored us both. She asked us if we had ever heard of Lewy Body Dementia and, of course, we had not. She briefly explained what it was and then told us to research the disease. 

I left her office feeling overwhelmed and terrified. I had never heard of Dementia with Lewy Bodies, but I did understand the word "dementia" and the images I was conjuring in my head were not giving me any comfort.

Fortunately I found two websites almost immediately that provided us with helpful and comprehensive information:

Lewy Body Dementia Association

Lewy Body Dementia Resource Center  

I quickly learned how debilitating this disease actually is and how devastating its affects can be not only those living with it but those who are tasked as caregivers.

I wanted to start this blog to both chronicle my journey but also hopefully serve as a resource to other people who may be faced with the same disease.  I am slowly learning how to better live with LBD and to realize that there is a lot of life still to live after this diagnosis.

So rather than consider Lewy my enemy and fight against it, I've decided to consider Lewy my new best friend and constant companion. We will undoubtedly have our ups and downs, but we can walk the journey together.