Because I worked at a Nuclear Power Plant in the eighties, it took me a while to figure out that “TMI” didn’t stand for “Three Mile Island’ but instead is an abbreviation for “Too Much Information.” Which is exactly what this post borders on. But, hey, I promised a long time ago to be open and honest about my experiences with Parkinson’s disease, so here’s the good, the bad,and the ugly of where I find myself these days.
First, the easy part – the good: Physically, I feel pretty good. Still working out every day, still eating more good things than bad. Balance issues are much better than a year ago, as it’s been that long since I’ve had a significant fall, and I crash into walls and doors less frequently. That’s the good news.
The bad: My eye to hand coordination is pretty bad, and I struggle to do simple things like tying my shoes. A couple of weeks ago while I was trying to help my wife hang new window shades, I had so much trouble lining up the bit on my cordless drill with the little Philips-headed screws that I soon gave up. Last fall, sighting in my deer hunting rifle was an exercise in waiting out the shakes until I was steady enough to hit the target a couple of times, just one of several factors that leave me about 95% convinced my deer hunting days are behind me now.
The worst part of my failing eye to hand coordination has been the impact it’s had on my ability to navigate a keyboard and write. When I look up at the screen after every paragraph I write I see the red font of Windows error notifications splattered across my monitor as if someone took a machine gun to it. (For example, here’s how that last sentence looked after I first typed it, before I cleaned it up:
When I lok up at he screen after evey paragraph I write I see eh red ink ofWindow’s
Erro notificatioonsaplatttred as if someoentook amachine gun o it.)
But all of that, difficult though some of it might be, I can live with, and when one considers that we’re going on thirteen years since I was diagnosed, if that were all there was to it, I’d be ecstatic.
However, I think I’m entering the ugly stage, and this is where I might be sharing TMI:
I think I’m in the early stages of Parkinson’s dementia.
It’s a difficult conclusion to come to, and even more difficult to share with the whole friggin’ world, but here we are. Maybe my willingness to share TMI is just another sign that I’m going crazy.
What makes me suspect I’m losing my marbles? Well, here’s my analysis of my current state compared with what the Alzheimer’s association (alz.org) has to say about Parkinson’s dementia:
What percentage of people with Parkinson’s develop dementia? An estimated 50 to 80 percent of those with Parkinson’s eventually experience dementia as their disease progresses. The average time from onset of Parkinson’s to developing dementia is about 10 years.
So thirteen years in, this might be the right time frame, although I’m finding that a lot of these averages are skewed towards the typically older age at which PD is usually diagnosed, and there might be other contributing factors at those advanced ages that don’t apply to me, since I was diagnosed in my mid-40s. In other words, the ten year average is probably a bit longer for us early on-setters, so I’ll choose to ignore this as a likelihood.
Here are the symptoms of PD Dementia that they list:
Symptoms: (From https://www.alz.org/dementia/parkinsons-disease-symptoms.asp)
Changes in memory, concentration and judgment
Anybody who’s known me for a long time knows that I was always something of an absent-minded professor, prone to all too frequently forgetting where I left my car keys. This has continued and seemingly worsened over time, but I’m still reluctant to recognize it as anything other than the erosion of short term memory that is typical with aging (I recently turned 59).
Concentration is a different manner, however, as I now doze off and fall asleep within a half hour of cracking open a book. This is new and frustrating as Hell. I had a pretty ambitious list of books on my autumn reading list, books by William Kennedy, Anne Lamott, Cormac McCarthy, and T.C. Boyle. Now here we are in mid-winter, and although I’ve started reading them all, the only one I’ve finished is Kennedy’s Ironweed, (a great book, btw). I remain somewhere in the first couple of chapters into the others, not how I typically like to read (I’d rather finish one before starting another).
Trouble interpreting visual information
This has become a big one for me, as I am always seeing things wrong. For example, the silhouette of a basket of dirty laundry on my bedroom floor might look like one of my dogs sleeping peacefully. It’s normally that benign, and I almost always recognize when it happens and if I stare at it long enough, I’m able to process what the shape really is. Sometimes, though, it can be jarring. One time, while alone in my cabin in the woods, I looked up from the chair where I was reading and there under the end table on the other side of the room, for a moment, I saw the severed but still smiling head of my son. It was only for a second, and I was quickly able to determine that it was, in fact, nothing but an old misplaced snowshoe that the lamplight hit at just the right angle, but it was long enough and vivid enough to scare the crap out of me.
This has been a major source of frustration for me for some time now. I often mumble and stutter. The reason this is a big deal to me is that for someone who fancies himself a writer, nothing is more frustrating than coming across as inarticulate and slow. Recently my internal reaction to people who complain “I can’t understand you” has changed to anger, irrationally directed more at the listener than P.D., and I have to bite holes in my tongue not to snap and lash out at them. As a result, more often than not, I find myself becoming quiet and not participating in conversations.
Fortunately, I haven’t had any of these yet (that I’m aware of).
Delusions, especially paranoid ideas
Unlike the current President of the United States, I’m fine on these fronts.
I understand how serious and debilitating depression can be, and although I have the occasional down day or two, it’s nowhere even approaching anything clinical. More days are still good than bad, and most of the time I can easily distract myself away from dwelling on the negatives.
Irritability and anxiety
Although I am often irritable, and certainly anxious about things, I don’t think it’s anything out of the norm. (My wife might disagree.)
Sleep disturbances, including excessive daytime drowsiness and rapid eye movement (REM) sleep disorder
Here’s my biggest and scariest symptom, especially if you add in “vivid dreams” and the “acting out” of them.
First, daytime drowsiness is just about constant. I take an afternoon nap almost every day, and on many days, I take a late morning nap, too. It doesn’t seem to matter how much nighttime sleep I get, either. Most nights I get six to seven hours of good sleep. There have been nights where I get as many as eight hours in, only to want to go back to bed an hour after waking.
Within the past few months, though, I’ve started having, with greater regularity, vivid and violent dreams that I act out in my sleep. In one dream, I was sitting at a bar with a friend and some unknown jerk who did something to piss me off. I reacted by grabbing him by the hair on his head and repeatedly slamming his face on the bar. The only thing that stopped me was the sound of my wife’s voice yelling at me to stop it, as I had a hold of her forearm in bed and was trying to smash it on the surface of the bar in my dream. She woke me up before I could really hurt her.
The worse was a dream I had this past Saturday. In the dream, I was on a big boat of some sort being captained by a big, armed guy who for some reason I knew with certainty was going to crash the boat in some rocks that lay ahead. As he was bigger than me and armed, I knew my only hope to overtake him was to catch him by surprise. When he came out on the deck, I jumped him and got him down and started raining punches on him as fast as I could. I woke sitting straight up in bed, still throwing punches down on the pillow below, where my wife slept. Suddenly to my horror I realized where I was and I looked at the clock radio on the nightstand, and it said 8:12. The room was lit by daylight, and I realized that my wife had already woken and was downstairs, and her side of the bed was empty.
The dream was scary enough but paled in comparison to the realization of what would have happened had she still been in bed. She assures me she isn’t worried, that so far when these dreams occur she is able to wake me up long before any real damage is done. Still, in the nights since last Saturday morning, I often find myself rolling over and putting my back to her, so if I wake up throwing punches, it isn’t at her.
. . .
So what does this all mean? In all likelihood, I guess it means that the disease is progressing. But that is certainly no surprise. It’s what diseases, especially “progressive” diseases like PD, do. They progress. Duh! I’ve known for a while that these things will eventually catch up with me.
The novella “Flowers for Algernon,” by Daniel Keyes, tells the story of a man with limited mental facilities who is given a serum by some scientists that transforms him into a genius. The problem is that the benefits of the serum are only temporary, and over time, he will transform back into an idiot, and he soon realizes, becomes aware of, his inevitable decline. It always struck me, from the earliest days of my diagnosis to now, now that it appears I might be standing at the beginning of some really dark days, that Parkinson’s is all about the same awareness and inevitability.
But while awareness of the inevitable and its encroaching darkness might lessen the light of even the brightest of good days, there is also heightened awareness of all the amazing truth and beauty to be found in the every day. Things like love and beauty, friends and family, food and drink, touch and taste, and wonder and awe, are all within our grasp in the everyday slant of the invisible ultraviolet rays that penetrate a window shade, and their memories are bright enough to give at least brief respite to the unending agony of the darkest night.
My job these days, then, is to capture as many memories as I can and put them in my pocket, so I can take them out and watch them illuminate the thick blackness of the coming night.
6 thoughts on “There’s the Rub”
Thanks for sharing. It’s not too much information, I’m sure there are others, like me, who want to know and don’t want to burden you by asking/reminding you every time we talk. I’m glad you can find the beauty in life while going through all this horrible, horrible stuff. Don’t ever forget you’re not in this alone, you have friends and family who will be there for you every step of the way.
Hi Dave! I found your blog after we both attended a small Michael Perry reading at a bookstore on the north side of Chicago. You articulated everything I had felt about his performance, but hadn’t been able to put into words. Fast-forwarding many years, I really appreciate you sharing about your health and experience in this powerful post. You have such a beautiful writing gift–with the ability to show the world through your eyes. I learned so much from reading this. Thank you! I look forward to reading your book.
Dave, I’ve hit my 80s, Darleen hits her 70s in months, and you are hitting your 60s speeded up by PD. By accepting your losses of balance, speaking, etc. you are doing the best self-therapy possible. I’d like to add mine to yours. I have personal experience with myself and others that can add to the good effort you are making. Let’s have lunch soon, and I’ll go over each item in the list of PD’s dementia signs. Some of them are just aging speeded up by PD. I experience more than a majority of your examples of frustrating losses. Let’s schedule a lunch soon before I forget. ð You will be easy to coach to accept and improve your abilities to speak, write, and just use your hands. The night terrors can be dealt with too. You have shared your expertise in writing with me and spent hours coaching me to write better. Now it’s my turn to coach you using my expertise in human fears and our brains. I have Monday morning & early afternoon free, Wednesday morning & afternoon free, and all day Thursday and Friday. Jim
Hey, Jim – thanks forthe comment – should we do lunch on Thursday?
Dave, I tried to warn you what would happen to you if you remained a Packer fan, but no , you would not listen to me…… I think your blog was fascinating and very educational….. Some of the symptoms you mentioned are part of getting older as I have experienced some of them….. Or maybe we spent way too much time together in the Prime room….. You know I am here if you ever need anything…. I think we should do lunch in Jan.. I will call you next week so figure out when is a good time for you… I am pretty flexible on days…..
Just the right amount of information. Hang in there Dave.