A Year Ago: When Was That?

A year ago, I posted “What About Us,” or something similar name. Me, I have Lewy inside of my head and all parts of my body. I posted here because I sense a lack of focus on the people who actually have LBD. I no longer come to this site, but I do visit the “Living With Lewy” facebook group managed by the LBDA.

Since “Living With Lewy” group was started in early December 2017, there are 80 to 90 people with Lewy who have signed up. It is a private group, and only people who actually have LBD or are awaiting diagnosis can visit the group. It might shock some to know that almost all of the members of the group are under the age of 70, maybe 75 anyway. That makes me one of the older members at 68. What really bothers me is the fact that probably 60% or more of the members are below the age of 55, and many are below the age of 45, and a lesser number below 35, and a group larger than you can count with fingers on one hand below the age of 30. We are doctors, lawyers, bankers, homemakers, religious leaders, teachers, professors, former business owners, artist, musicians, former hell raisers, mothers, fathers, grandfathers, and good people who don’t feel the need to have a designation of their rank in today’s world. But we all continue to ask the same question: What About Us?

As bad as it to say, there are very few doctors who know anything at all about LBD or what it is like to be a person with LBD. The scary thing is that there not many doctors who care to learn about LBD. They assume we are faking our symptoms because how else could we walk, talk, and chew gum. Sad to say, but many family members of the people in our group also think we are faking. Why all this misinformation about LBD and those of us who live with Lewy inside our heads and bodies? Yes, why?

When people meet one of us, they assume we couldn’t have any real problems because we aren’t hitting our heads against nearby walls, or drooling on ourselves, and god forbid we can still remember the members of our family. Heck, we can even type, read, think, and do some real things. But then we also see, hear, feel and sense things that aren’t real to anyone else, we have trouble talking, we have trouble walking and maintaining balance, we fall or bump into anything we walk past, our eyesight is messed up, and our muscles and joints are stiff, cramped, and painful as all get out, and we are confused and anxious most all the time. And maybe worst of all, we can get very angry at the drop of a pin. We can be crazy, just plain crazy sometimes.

What about treatments or medicines to help us with symptoms? Not much around works well, as most of the members of our group can attest to. I have a name for our group: The Group W Bench. If you don’t know what this means, then I will let it remain unknown, but I bet a good number of people without LBD know what this refers to.

I have even reached the point now where I have read up on CBD Oil as a possible source for some relief, and golly-gee I am actually using it now with some possible benefit, but not much yet. And you got to know that I am desperate for some relief in order for me to take a flyer on what many people believe to be today’s snake oil. No wagon of old, but the internet is now how things are done.

Yes, it has been a year since I last posted here, and maybe I will be able to post again next year, but who knows. This journey only gets harder and harder and harder to live with. I can fully understand why people with this disease elect to leave this world early on their own terms. The problems only get worse, new problems begin and then get worse, our spouses and/or caregivers are getting worn out and starting to lose their minds, and anyone with financial resources at the start of this journey has a whole lot less as the years pass.

From our Group W Bench, I can see that most of us have similar types of symptoms and problems, but they differ greatly as to onset and severity. Yes, each Journey is different, no question about it. But each journey goes in the same direction from diagnosis to death, with a hell of a lot pain and torment along the way.

I need to end this now. But one final thought: Everyone should really think about the people who have LBD and who still have children living at home with them. Some are single mothers, some are single fathers, and some have a spouse whose life is being wrecked by LBD. And then there are the children. Yes, I figure I had a good and full life up until Lewy came a calling, but far too many of my brothers and sisters have not had the opportunity yet to have a full life or to see their children become grown up.

So I ask a year later now: What About Us.

Bill Young

Jan 13, 2019