Scary Beginnings

"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 LBD visit with my neurologist, whom I absolutely love by the way. She is very kind but does not sugarcoat things, which I really appreciate. After our first visit she had told us to do some research on LBD, which we did.

One thing I have discovered about LBD is that there are many questions but few real answers. LBD is the second most common form of dementia after Alzheimer's but no one has ever heard of it. At least I had never heard of it prior to my neurologist telling me that I had it. 

In my head I understood that the average life span for someone diagnosed with LBD is 5-7 years after diagnosis, but that there were cases of folks who had lived 20+ years with the disease. To hear it out loud, however, is quite different. My heart was not prepared for the finality of it.

I mean, I'm only 58 years old, so did that mean I was going to be dead by the time I was 65? According to my research, most patients were diagnosed well into their 70's, so did that mean I still had more time?

I immediately thought of my two daughters and my grandson, who had just turned 3 years old. How long did I have with them? Who would take care of my family? That has always been my job - to "fix" things and to take care of everyone. 

So many questions and feelings - it was all so overwhelming...

The next few weeks were just a whirlwind of emotions and tasks - most of which were becoming increasingly difficult for me to deal with. Trying to work my way through my abrupt and sudden "retirement" from work, navigating Social Security Disability and Long Term Disability, coming to grips with my inability to do the physical things I was able to a few months prior, and figuring out who to tell and how much to tell were all overwhelming and just the worst - at least for me.

Through it all, my wife Michele was and continues to be my rock of support. We have cried a bit at times, and I'm sure she grieves more than she lets on to me, but we keep saying, "We will face it as it comes" - and we are trying. My daughters and son-in-law have been so wonderful - stepping up and helping out in a thousand ways. And my grandson keeps the joy in my life regardless of what else is happening.

As angry and frustrated as I was in the beginning, and still am now at times, I never questioned, "Why me?" In fact, I always tell people, "Why not me?" It may as well happen to me as to anyone else. While I don't believe events are pre-ordained, I do believe there is a purpose. What the purpose of this is I don't know right now - and I may never know. But I do know that with the grace of God, the love and support of my family, we will all get through it.

Scary beginnings, but the journey goes on.