Navigating the Ups and Downs

I am here and then I'm not

I understand and then I'm lost.

I am up and then I'm down

I smile and then I frown.

I never know who I will be

I only know it's no longer me.

My new friend Lewy is quite a handful - even on good days! While there are so many things I really grapple with on a daily basis with this disease, fluctuations (or severe changes) are some of the most difficult. 

These fluctuations may occur at any time, which make trying to deal with them incredibly difficult. I do not know when they're going to happen, or for how long, or in what form they will take. For me, these fluctuations are both physical and cognitive and can occur day to day, week to week, or minute to minute. 

The cognitive fluctuations I face are things like lack of concentration, confusion, slow or delayed responses and reactions, inability to find words, decision making, impulse control, and task management. Anything dealing with executive functioning. 

The physical fluctuations impact my mobility and are part of the Parkinson's part of Lewy Body Disease. I've mentioned Parkinsonisms before, and I want to devote more time to that in the future, but they greatly affect my balance and movement. 

Fluctuations are one of the hallmarks of Lewy Body Dementia, and highlight one of the main differences with other forms of dementia. 

While Alzheimer's is known for its slow and steady decline, and Vascular Dementia is known for its relatively regular declines and plateaus, Dementia with Lewy bodies (my specific diagnosis) feels quite schizophrenic. The graph below is simplistic, but really conveys the trajectory of this disease over time.

As you can see from the trajectory of the DLB graph, living with this disease is truly like riding a rollercoaster. One minute I'm climbing upward and things are going smoothly. I might make some small dips and turns but things are pretty stable and I'm feeling pretty good. And then the next minute the bottom falls out and I'm plummeting downward, hitting twists, turns, and loops that leave me confused, unsure, and totally exhausted. 

But then I start climbing up again and things start to get more clear. When I hit the top again, it's never quite as high as before but it's good. The ride will smooth out for a while - it could be days, weeks, or even months - but the bottom always falls out and then it's a free fall until the car starts climbing up again. The sad reality is that the trend is always downward - however slow or fast it moves. 

I wrote in an earlier blog about "brain fog", as I call it, and how that makes me feel as it rolls in and out. As time has gone on, I almost always feel some of that fog around the edges of my thinking. More and more it feels like my brain no longer has any sharpness or solidity - there are only rounded edges and a general sense that my brain has been pushed through a sieve - like it lacks substance and feels mushy (I know - very scientific term! lol). 

It is difficult to go through every day always in a constant state of lesser or greater fog. On the days when the fog really rolls back - my "good days" - I feel more like my former me. I have great balance, I can concentrate on a book for longer than a few pages at a time, I am not so mentally and physically tired, and I can interact with everyone and feel almost "normal". However, the good days don't last; and when they do they don't always last for very long. 

The most frustrating part for me - and I know much more so for Michele and the girls - is that I never know when or how long the good days/times versus the bad are going to occur. It must be so hard for my wife to not know what she will find when she comes home from work or leaves me alone for a bit to go shopping. 

I also never know when I get up in the morning whether it's going to be a good or a bad day. Sometimes I hate to take a nap or go to sleep at night because just don't know what I will be like when I wake up. It is a constant, nerve racking rollercoaster ride that is just exhausting for everyone. 

My friend Lewy has turned out to be very high maintenance and often times more my enemy than a friend, but he has certainly helped me grow and learn in different and unique ways. He and I ride this rollercoaster every day, and because I have wonderful friends, a loving family, and a supportive and tender care partner they get the mixed joy of riding along with me. 

I really wish the ride would end (for their sake more than mine at this point), but I'm not quite ready to get off the rollercoaster yet until we can find a cure. I still have a lot of life left to live and, hopefully, a lot more that I can contribute. At the end of the day, isn't that what it's all about? 

So until then, we will continue the ride, with all of its ups and downs and twists and turns  - enjoying all the great days and times and persevering through the bad ones.