One of the things I do to attempt the combat of depression is to pick out the ‘silver lining’ in the symptoms that make up the disabilities I have. Example, my diabetes has allowed me to start eating more healthy, which resulted in losing a bunch of weight. Yes, diabetes sucks and I’ll never get used to effectively stabbing myself a couple times a day, and the medication I take has side effects that are less than desireable. However, I feel better generally that I’ve lost weight and am putting a better quality of food into my gullet.
My wife and I joke about the short term memory loss that comes with my Parkinson’s Disease. We both find it amusing that I can re-watch movies and television shows that I’ve seen and get to enjoy them all over again. When there are months on end between seasons (series) of my favorite shows, the networks usually run marathons of the previous season right before the new season starts. AMC and BBC America will run marathons of last season’s “Walking Dead” and “Doctor Who” prior to the new seasons starting and I’ll have my popcorn ready.
Sorting out my entertainment is a coping mechanism, though. NetFlix, Redbox Instant, YouTube and Spotify all have playlist functions, and not catching up on Downton Abbey won’t have a detrimental effect on me. There are aspects of short term memory loss that can be debilitating and sometimes dangerous.
While relaxing last night, my wife and I stumbled upon a movie I had not seen in quite a while called “Memento,” which was a psychological thriller about a man who has anteriograde amnesia (the inability to create new memories), and how he coped with it. While the character in the movie chose to tattoo himself with notes, his practice of keeping notes and carrying pictures with notes on the back to remember people and places is actually one that is very effective.
My short term memory loss is not anteriograde amnesia. It’s simply called Parkinson’s Disease Dementia, and is similar in some ways to Alzheimer’s. It’s basically a slow, progressive process that effects my ability to retain short term memories. I find it almost impossible to learn how to play new music, but sit me down at a piano and I can hammer out songs from the 60s through the 90s like it’s nobody’s business.
Integrating into society is getting problematic, though. Writing notes to myself helps sometimes, but this can spiral into a spider-web due to needing notes to remind me of the notes, and so on. It wouldn’t take long for my bedroom wall to resemble a scene from “Beautiful Minds.”
While technology in the form of list, reminder, countdown and alarm apps on my smartphone helps, there are inherent complications to this, as well. Too much sensory input causes confusion, and I am prone to not checking what the notification is immediately, mostly because of not knowing why my phone is making that godawful noise. Then the memory of getting a notification quickly fades. Time is a thief.
Thus, the reason why people like me need a primary caregiver. In my case, my wife functions as mine. She reminds me to do things like take my medication, check my blood sugar levels, eat my meals and keep me constantly updated on schedules.
As odd as it sounds to ‘forget to eat,’ this is a reality for people with dementia, and when you combine this with being diabetic, missing two or three meals can be exceedingly dangerous. Asking someone with dementia if they “ate today” is a perfectly valid question.
Taking one’s medication also seems like a no-brainer, but forgetting to take medication is another reality. I have one of those handy pill boxes that mete out medication by date and time of day and they are great, but I usually forget that I have one.
I’d be lost without my wife, and this is not an exaggeration. The reminders she gives me are brilliant. She writes me little notes and places them where she knows I will see them. The physical presence of a note stuck to my laptop, the bathroom mirror, the inside of the door leading from my bedroom to the hallway or on the refrigerator has a completely different effect than an alarm on a phone. However, she also sends me texts throughout the day telling me to check the notes she left, and will not stop bugging me until I reply with an acknowledgement that I’ve done what the note says.
If she does not get that acknowledgement, she’ll leave work to make sure I’m not lying dead somewhere around the house. To date, I’ve not died somewhere around the house. Usually I’ve just forgotten to take my phone off vibrate.
Out and About…
While other symptoms of my Parkinson’s (along with my neuropathies) prevent me from doing a lot of driving, when I do go out, I don’t venture too far from home and it’s important to have some sort of navigational aid. The most obvious one is my GPS. However, I’ve gotten hopelessly lost while the unit is recalculating.
Best practice is obviously to have someone with me, as I’ve been known to get lost and completely disoriented a mere few blocks from my house and have found myself miles away from where I intended to be, not really sure how I got there, and have gotten lost on the way home from getting lost, only to arrive home without accomplishing the thing I set out to do when I left the house.
Thus, a combination of written instructions on where I am going, what I have to accomplish once I get to my destination, texted reminders from my wife while I am out, a GPS to get me from place to place and then back home have proved to be extremely valuable tools. I’ve also found that when I have to go to the grocery store, taking a picture of the things I need helps me identify it on the shelf.
None of this helps in other situations, though, which is particularly troublesome for me. Especially where people are concerned. Remembering names, faces, past conversations and introductions are still problematic. Many people get insulted when I don’t remember them when we’ve been previously introduced. Others get frustrated with my inability to recall conversations, often perceiving it as not caring about what is important to them, or arrogance, or indifference.
So, when someone approaches me that I am obviously supposed to remember, I cringe. When they start talking about something that I am also obviously supposed to remember, I start to panic on the inside. On the surface I smile, shake their hand, call them a generic term of endearment or craft my re-introduction in way where I don’t have to use personal names.
I nod a lot when they are talking, all the while hoping they say something that will clue me in on what their name is, who they represent, where I met them before, what the hell they are talking about, what I might have told them during our last conversation and come as close as an atheist can to praying that someone I know doesn’t come along before I figure all this out and have to make an introduction.
Of course, it would be great if people I don’t see on a regular basis or know fairly well would just give me this information at the outset. Like,
“Hey, Al. It’s me, Henry. Coordinator for the Acme Corporation. We met last year at the Seattle convention. I enjoyed our conversation about the mating habits of Hummingbirds. How’ve you been?”
This, of course, never happens.
The cause of Parkinson’s Disease dementia is unknown. However, scientists do know that there many genes which contribute to its development. Some of these genes are thought to cause Alzheimer’s disease.
I’ve already experiences some changes in my thinking and reasoning, as well as an increasing amount of confusion. My alertness varies significantly from day to day, and while I have not yet experienced (that I know of) visual hallucinations and delusions, they are inevitable, as will be my ability to interpret visual information. It should be noted that dementia offers a viable explanation to what happened to Antony Flew.
There are no medical treatments that can stop or even slow the brain cell damage caused by dementia. This is more disconcerting to me than my physical disabilities such as my mobility problems and my diabetes. I can deal with canes, wheelchairs, walkers, BGM machines, etc. When the mind goes, I reason the person goes with it. Death without dying, so to speak.
Until then, though, I’ll continue to meet it head on with a sense of humor, a positive attitude and the knowledge that I am surrounded by people who love me and are determined to keep my spirits up and make sure I stay out of trouble and understand that sometimes I’m in a fog.
Oh, and if you run into me somewhere, for the love of Pete, tell me your name.