- I get asked all the time how am I doing. I guess everybody asks everybody that as an informal greeting. But since I came out publicly with my degenerative brain disease called Lewy body dementia, both the question and answer take on an added layer of significance.
Sometimes I say ‘fine.’ But Catherine has trained that answer right out of me. Those who know my wife know that she responds to people who say they are fine by saying: FINE stands for Frustrated, Insecure, Nervous and Emotional.
So how am I doing?
Not fine. I mean not Catherine’s fine. I feel pretty good. Most of the time.
My disease affects 1.4 million Americans and is the second leading cause of dementia after Alzheimer’s. There is no known cause or cure. Average life expectancy is 5 to 7 years after diagnosed. I am 58 and about 15 months past my diagnosis of Lewy.
So I am not fine. Or, I am indeed Catherine’s FINE. Some of the time.
You could say my awareness that something was wrong with me was nearly two years ago. The key indicator was that my arm was involuntarily pulling up into what Parkinson’s patients recognize as the gunslinger’s position, near where your holster would be if you had one.
So in August of 2016, it was no surprise that when we went to the doctor and neurologist that we came home with the diagnosis of Parkinson’s. I say ‘we’ because Catherine is so interwoven into the fabric of my being and is taking this thing on at my side. And so are my daughters, and my friends and my employer and my… well you get the picture. I have a lot of people who care for me.
But other things — the advantage of hindsight and lots of research — led to other things. I had been having some memory problems for a while, also sleeping problems and also anxiety of the likes I’d never had. This led to a psychological evaluation, which led to the conclusion that while I was no Einstein to begin with, I appeared to have lost some cognitive function. Enough that the diagnosis came back Lewy bodies, which simply means that i have been having cognitive problems from at least the onset of the gunslinger, and probably before that.
With Lewy body patients, an initial Parkinson’s (mis)diagnosis is not unusual. In the brain, the disorder is practically the same malfunction in Parkinson’s and Lewy’s patients. An overabundance of proteins from who knows where are killing neurons which are pretty vital as part of the brain’s communication hub to the rest of your body and mind.
It’s like an airplane (slowly) losing it’s ability to communicate with air traffic controllers. Oh, and automatic pilot quits working as well.
According to neuroscientists most folks are losing about 7,000 brain cells a day. Even though you have 100 billion brain cells to start with, if you start losing millions to the alpha synuclein hordes, it’s going to wreak a little havoc.
So Lewy is similar to Parkinson’s and some doctors go so far as call it a type of Parkinson’s. Here’s the difference, Lewy by definition affects a person’s mental faculties. There’s dementia all the time with Lewy. Not so with Parkinson’s, although eventually Parkinson’s patients, if they live long enough, may show dementia, as do many people when they age. Many Parkinson’s patients present symptoms of uncontrolled movement or shaking, like Michael J. Fox. That side can come with Lewy’s as well.
Here’s the Lewy Body Dementia Association’s explanation.
In a way, it’s all semantics. There is no definitive tests for these diseases until we open up the skull and take a look. There’s even research that maybe its not the proteins that are killing the neurons after all.
I do know there is no clear prediction on my future. I know I may not have much more time. But I might be around for a while and the medications, which are not a cure, keep symptoms tamped down.
It’s a disease or an umbrella of diseases that has different effects on different people. The key is figuring out how to treat it.
After years of suffering and misdiagnoses, Robin Williams killed himself. When they looked at his brain, they found it was full of this flopping protein, Lewy bodies.
So we need awareness. We need more research. We need it urgently. Someone who has Lewy who is misdiagnosed with Alzheimer’s may face serious harm or death if given certain medications to treat symptoms of Alzheimer’s disease — such as some anti-psychotic drugs.
So how the heck am I?
I’m happy to be able to write this to get the word out.
I am happy to see people who care.
I am happy to care for people while I still can.
I am sad to see tears and am happy when they turn to smiles, in the moment.
In this moment, I feel as good or better than I did a year ago, thanks, I believe, to finding the right balance of medications.
I’ve written that this blog is therapeutic. I am counting down my 678 records as I go along. My goal, or rather MY PROMISE, is to finish off those records. I haven’t counted recently but I’m over 90.
I believe I am close to 100.
I believe I am close to. I believe I am close. I believe I am. I believe I. I believe.
I.
How the heck am I?
Really, I’m fine.