A Year with Lewy - Changing and Growing

​This is my second attempt at this. I spent a few days writing my last entry and, thanks to Lewy, I ended up losing the whole thing. Well, as my old boss used to say, "That's an indicator." lol So here goes take #2...

I started this blog last year to try to capture my journey with my new friend - and nemesis - Lewy Body Dementia. Primarily I started this to share what I'm going through with my family and friends, and to inform others about LBD, which is the second most common form of dementia of which no one's ever heard. But I also wanted to leave a legacy for my 3 year old grandson, Theo, to look back on someday so that he would know there was more to his Bumpa than just dementia and the face he will end up seeing and the decline he will watch me experience as he gets older and this disease inevitably progresses. 

I want to thank everyone, including my few but loyal and loving fans (who woulda thunk!), for following along with me. If you like this I would appreciate it if you would hit the "follow" button to the left. Evidently it's a blogger thing. 😉

There are many topics I want to write about in the future, including hallucinations and delusions, apathy, Parkinsonisms, and others but I felt that this would be a good time to stop and share where I am now compared to a year ago. 

I still find it hard to believe that it has been a year since our initial meeting with my neurologist when she asked us if we had ever heard of Lewy Body Dementia. Since that meeting, it has been a year of significant trials and tremendous lows, but also surprising blessings and gifts that I would never have experienced had Lewy not entered my life. 

So a year after my diagnosis...it may sound odd at first but I have actually made some significant progress physically. In fact, I feel better than I have in a very long time. There are some reasons for that - I think - that I will talk about in a minute. Cognitively I can tell that there has been a greater decline in some areas, especially concentration, focus, executive functioning, brain fog, and memory. For example, these blog posts take longer and longer to write and I have to work much harder to keep them focused and organized. But I want to focus on the positive side today. 

As many of you know, I have had to use a u-shaped walker made specifically made for Parkinson's patients for over a year (see one of my earliest blogs) due to my frequent falls and lack of balance. My wonderful physical therapist, Celina, calls it my "Cadillac". It was a game changer for me in my ability to get around safely and confidently.

After a year of going to physical therapy every week, and as I write this today, I am able to use a cane for short distances - mostly inside the house for now and to get to and from the car. I only use the Caddy for when I am outside going for a walk, am overly tired, or when Lewy shows up and messes with me. 

For those who have never experienced having to use a walker - even for a short period of time - I cannot begin to tell you how much it means to just get up and walk freely. There are always doorways, entrances, and steps to contend with when you're forced to use a walker (or worse, a wheelchair), and it is a continuous hassle to go anywhere. The Caddy is not a lightweight device, and it's awkward even when it's folded up, so it is a real hassle to travel anywhere. While I know that my family and friends are happy to deal with it, I also recognize it's not easy. I really feel like I have some of my independence back and that I'm not quite such a burden. 

Celina and I have discussed my improvement and we've come up with a working theory based on the data we've gathered for over a year that seems to both fit her knowledge of physiology and my understanding of LBD. This is not a medical explanation in any way nor one I've had the chance to discuss with my medical team, but I bet they will agree that it makes sense in my case.

Perhaps the strongest factor in my current physical well being is that I have most likely started recovering from a series of concussions I received over the past couple of years. I had a number of frequent falls during the months of October 2022 through January 2023, and some infrequent falls dating back earlier than that. Many of them occurred while I was in Concord as I used to travel from my home in northern New Hampshire to the state capitol weekly for my work. I had a small basement apartment that had multiple levels, which became much more difficult for me to navigate successfully. I also fell at home, although these were more stumbles usually as I would lose my balance or miss a step.

Most of the falls or stumbles involved hitting my head - either on the doorway, the floor, the tub, the coffee table - you get the idea.  The last major fall I had was at home and I hit the corner of our coffee table with my head pretty badly. Celina has a great deal of experience with concussions and traumatic brain injuries, and she is quite convinced that I had a very severe concussion when I first came to see her a year ago.

When we factor in how long a "normal" brain can take to recover from a series of head injuries together with a brain affected by Lewy body disease, it would make sense that it has taken over a year for my brain to even begin to repair itself. And the reality is that it will never fully recover at this point. 

There is a great deal of research now on the intersection of TBI (traumatic brain injury) and neurodegenerative disease - especially the onset of Parkinson's Disease (PD) and dementia. Taking into consideration that Parkinson's  and Lewy Body Dementia exist under the umbrella of Lewy body Disease, with the same abnormal deposits of alpha-synuclein protein deposits, it is not a stretch to think that there may be a link to TBI and the acceleration of LBD. 

Another major factor that I have come to realize is probably as important as the concussions is the impact of stress on my condition. As my neurologist explained to us when I was first diagnosed, the incredible stress I was under at work most likely greatly accelerated the timeline of the disease.

So much of what I was experiencing during the last few years that I was working that I chalked up to the reality of the job was actually the manifestation of LBD exacerbated by the stress I was under. I was constantly getting lost trying to get to and from meetings or appointments, missing meetings because I forgot about them or was simply so overwhelmed I could not get out bed, not able to concentrate for more than just a few minutes at times when I was trying to read something, not always able to follow conversations or discussions so I would make inappropriate remarks or nonsensical responses to questions, making snap decisions without thinking them through, delusions that people were out to get me or were working against me, seeing patterns and people that weren't there out of the corner of my eye at all times of the day, and just feeling so overwhelmed all the time. Apathy is a hallmark of LBD and something I will write about in a future blog, but this was a major symptom of this disease that I struggled with continuously.

I became more and more withdrawn both from my colleagues and my family - full of anxiety, guilt, sadness and depression. I chalked all of that up to simply being overly stressed out and that when things would just slow down for a minute I would be fine. So I did what I had always done in the past - shut up and soldier on hoping that things would just get better. Needless to say they did not.

Having been "medically retired" for over a year now, I can easily see how much the stress I was under so negatively impacted everything I was doing. The last two years that I was working were truly a living hell, and then I was faced with additional financial and emotional stressors when I was placed on long term disability and had to get done work much earlier than I had ever planned. That whole time period was so difficult it is only now - over a year later - that I can begin to think about my former job without overwhelming feelings of dread, anxiety, anger, depression, guilt, and sadness. 

Another factor that has positively impacted my current state of well-being is the fact that I have been on the correct medications for almost a year now. While there is no cure for LBD (yet anyway - there is always hope!), there are ways to address the symptoms. I currently take medication to help with cognition, hallucinations and anxiety, depression and mood fluctuations, and insomnia. It has taken a while to get the right medicinal cocktail mixture correct, and it will always need to be adjusted as the disease progresses, but at this moment in time it seems to be just about right. I have also lost some weight and been able to exercise more, which research has also shown to be of great benefit for those of us with dementia. 

And lastly I would note the importance of an effective care team in how well I am doing. My team is really amazing and consists of my primary care physician (who is absolutely outstanding), a neurologist, a psychiatrist, a psychologist, a physical therapist (again outstanding), an occupational therapist, a speech pathologist, and most importantly, my wife Michele. It helps that all of my medical team works in the same health practice in Concord, so they are able to coordinate and function much better than having doctors in different practices who don't talk to one another. My therapy team is local and they also work together and communicate often with my doctor to keep him up to speed. 

So while it is not necessarily medically or empirically provable, I firmly believe that all of these factors - my concussion recovery, absence of overwhelming stress, the correct medications, and an excellent care team - have all contributed to helping me feel better than I have in some time and better able to handle the onslaught of this disease. 

As I mentioned when I began this post, there have been many trials and tribulations during this past year, but also some hidden blessings. For the first time in many years, I have actually been able to be home with my family on a daily basis without traveling all over the state and, at times, all over the country. I have been able to see my grandson grow up in front of me, having the luxury and the blessing of seeing him almost every day in the little house right behind us. 

I have had time - such a rare commodity today - to think, reflect, and to pray. I have been able to turn my thoughts from petty state and national politics and its impact on public education and policy and devote more time to thinking about how I might better advocate for dementia awareness and disability rights. 

I have made new friends and found support in places that I would never have looked for before. I have seen love and acknowledgment from strangers facing the same struggles as well as grace and bravery in the face of unimaginable loss.  

It has taken me a year to move past the initial shock of this diagnosis and turn my thinking from it being a death sentence with little hope to an acceptance that this is where I need to be right now and to infuse as much hope and love as I can for as long as I am able.

I have a poster on my wall beside my desk here at home - the same poster that's been in every one of my classrooms and offices during my 30+ years in education - that states, "It is only through change that we grow".  I have always believed that to be true - perhaps now more so than ever. 

Thanks for reading and please don't forget to "follow" my blog for more posts as they become available. Thanks! 😀