Lewy is Being Okay (for now...)

 

I realized today that I had not posted anything here in a while, so I wanted to be sure to include the good as well as the bad and the ugly. Walking with Lewy is a rollercoaster, so when things are going well I really just try to enjoy the ride always knowing the downs are going to come at some point.

As I think I mentioned in my last entry, I physically I have been feeling great. I am able to walk using just a cane for a little balance except when I'm over tired and am able to do more around the house than I have been. I do things more slowly and can only focus on one thing at a time, but at least they are getting done!

As with everything with Lewy, however, there are trade offs. I find myself losing concentration quickly - especially when it involves conversation or talking. It is becoming harder to follow conversations or to listen while others around me are talking. I find myself drifting off - sometimes even closing my eyes because I feel exhausted from trying to concentrate. 

Spending an extended time on the computer makes the brain fog more pronounced, which then completely drains me physically so I don't have the energy to do much of anything else. So while I physically can get around better, I'm sometimes too mentally tired to do so. 

One of the greatest joys of my life has always been reading. I have been an avid reader since my earliest recollection. I was reading the newspaper before I went to Kindergarten, so it's always been a strength that I've relied on. It has always been therapy for me to get lost in another world or time and become friends with the characters. 

Now I find that reading has become much more of a chore. I can read a few paragraphs at a time, but I am constantly putting the book down because I lose my concentration and am unable to focus. I can go back to it again after I do something else for a bit, but it's a constant start and stop without being able to keep up with the ebb and flow of the story. It's become much more annoying over the past few months. 

I am learning to cope, however, and am trying to make adjustments as Lewy ebbs and flows. I am determined not to let the disease define who I am and what my remaining time is going to look like. I can still take charge of certain aspects of my life, so to the extent possible and practical that is what I am going to do.

I realized early on in this journey that I needed to have a purpose if I was not going to sink into complete despair and just sit around waiting to lose myself and fade away. For over 30 years my passion and purpose had been twofold - my family and my vocation. I have always considered being an educator a vocation rather than just a job or even a profession (although it is both). I don't know if that's my Catholic faith or the fact that I considered the priesthood before I met my lovely bride, or if I'm just weird (probably the latter! lol), but to me teaching students and then serving teachers and students as an administrator was infinitely much more than a paycheck.  

Then when I served as the representative of all school system leaders in our state as the executive director of the state superintendents' association I felt I had reached the pinnacle of my career. Focusing on advocacy at the state and national level regarding issues of public education, student safety and well being, safeguarding the benefits of a public education accessible to all students, and providing continuing education and support for administrators in the field felt like the culmination of a steady and fulfilling vocational life. 

So when I was diagnosed and had to leave that position so abruptly and without being allowed any closure, I was left feeling very depressed and directionless. I had lost a big part of my purpose and my identity. 

After spending 30 years focusing on education, I now realize that it's time to focus on a more immediate and personal agenda - dementia awareness and education. 

To that end, I have begun working with the National Council of Dementia Minds , an organization that was founded by and is governed by those of us living with dementia. The focus of this group is on education and advocacy - two areas in which I have a great deal of passion and experience. I hope to bring whatever expertise I have to destigmatize dementia and bring a greater awareness to others - especially medical and assisted living providers - that there is a great deal of life after a diagnosis of dementia and that we can live it well. Differently most certainly but well. 

I knew I needed a renewed purpose if I was going to beat this thing. And I have decided I am going to do just that. I refuse to follow the prognosis statistics and be the person that succumbs in 5-7 years. I firmly intend to be an outlier for as long as humanly (and spiritually) possible. Lewy will be walking with me, but he's not going to keep me down.