My Walk with Lewy

For the students in SAU 58, where I was a superintendent for 8 years, an elementary principal for 5, a school board member for 8, and a student for 13 - this is the first day of school. It has felt very strange for me not to have anything to do attached to education on the first day of school. So I thought I would take a few minutes and stroll down memory lane a bit. While there a few potholes and too many missing chunks, I wanted to capture my thoughts before it all disappears. I've spent most of my adult life as an educator - first as a middle school classroom teacher and then as an administrator. I've had lots of different roles and many years in education, but I would have to say my favorite time was as a teacher. My biggest regret is that I did not spend more years in the classroom before I made the move to administration.  I loved working with middle school kids because they could still be excited about learning and could have fun. Sometime I had to drag them to the fun a...

  "Life's but a walking shadow; a poor player, that struts and frets his hour upon the stage, and then is heard no more: it is a tale told by an idiot, full of sound and fury, signifying nothing."  William Shakespeare As the fog rolls in over my mind, I start to feel lost. Bits and pieces of me begin to float away.  My thoughts become a chaotic jumble of words, images and sounds that make no sense. I hear people talking to me but it's hard to concentrate to determine what they're saying. I find it harder and harder to articulate what or how I'm feeling, and my words become slurred and disjointed.  My body starts to stiffen so it becomes difficult to move without extreme effort, and I begin losing my sense of where my body is in relationship to the world around me. Up feels down, down feels up, and I feel like I'm moving too fast when in reality I'm just shuffling.  I can see the concern on the faces of my family but I can't react to it. I am bombar...

One of the most difficult aspects of LBD for me is dealing with all the new physical limitations.  Lewy Body Dementia is actually an umbrella term that consists of two different types - Demential with Lewy bodies (DLB) and Parkinson's disease with dementia (PDD). Parkinson's is also a Lewy Body disorder, which is caused by Lewy bodies in the area of the brain that controls movement. While there seems to be some disagreement in the medical field, it is most commonly understood that if you experience the cognitive issues first, and then develop Parkinsonisms, that is Dementia with Lewy bodies (which is what I have been diagnosed with). If you experience the Parkinsonisms first, and then develop dementia later, that is Parkinson's disease with dementia. Many people can be diagnosed with Parkinson's and not experience dementia until they are quite far along in the disease. Conversely, many people with Lewy Body Dementia may never experience significant Parkinsonisms. The di...

"You should think about getting your affairs in order..."  Even though I suspected they were coming, those words shocked me to my very core. I remember feeling immediately extremely cold and then complete disbelief. I turned to Michele and just looked at her across the room with tears in my eyes.  How could this be happening? I was "fine" at Thanksgiving - at least I was still walking unaided, able to drive, and still working. Now - just four months later - I was forced to use a walker, no longer safe to drive, not working because I was on medical leave...and now I need to get my affairs in order? What did that mean? I remember asking if I would be able to go back to work, and my neurologist said, "No...you are medically retired...". She also highly suggested that I give up driving completely due to my diagnosis. She was placing me on permanent total disability. Wow...within the span of 15 minutes my whole life had turned upside down.  This was our second ...

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 ...