Posted Stardate 101330.48 (aka 9/25/23)
“You alone are the Lord.
You have made the heavens,
The heaven of heavens with all their host,
The earth and all that is on it,
The seas and all that is in them.
You give life to all of them
And the heavenly host bows down before You.” Nehemiah 9:6
I am a geek. I admit it. I am not as geek as geek gets, mind you, but I do have some geek cred to be sure. Here is an article from 2019 that I shared a little geektitude: LINK However, for some reason, geekedness is tied, for some, to how much you watch Star Trek and similar. I can play that game because I LOVE the show. Deep Space 9 and some of Picard are the only ones I have not blasted through several times. The more I watch this show in all of its forms, the more I realize 2 things: they pre-suppose technologies that have ended up happening in our modern lives; and, there is a lot you can learn about dementia from this stuff! (I thought of grabbing my shoe horn to squeeze the topic into dementia-fodder, but when I looked I found Klingon Shoe Horns and needed to share that 🙂 LINK ) Make it so, #1
10 Things You Can Learn About Dementia from Star Trek
- If the human brain is like the Enterprise (stay with me here…), both have a shield that is critically important. Some Star Wars Universe episodes state you cannot beam out through a shield, while others seem to do so freely. It just depends on the needs of the script writer. I am sorry to those who are more hard core who can explain exceptions away…but this stuff, for now, is imaginary. BUT, to a brain, be thankful for the shield. In the brainosphere, there are a couple of shields: The hard, external one called the skill and the inside one called the “blood brain barrier“, or BBB. This nifty chemical/cell barrier is closer to being chief engineer, Montgomery “Scotty” Scott, than an actual physical barrier. It is something of a filter…a controller of what comes and goes, at the request of a functioning commanding officer/brain, to parts of the brain. It keeps the bad out while letting the good in, even better than it seems the Enterprise can. Without this BBB we would get picked off by the first little Tribble sniffle virus who wanted to destroy it. But alas, we are “fearfully and wonderfully made“and our brain is pretty darn safe, thank you very much.
- The head struggling is not unlike the Enterprise when it faces a very hard foe (the Borg is one example). It takes some hits and becomes weaker. If a shot hits somewhere critical, the range of possibilities runs from immobilization to implosion. Same with how the disease attacks the brain. Interestingly, there are typically lulls and plateaus in progression, then the disease finds just the right/wrong place and things decline rapidly. Where the weapon hits directly causes specific, predictable problems. You can almost predict where the disease is hurting the brain the worst looking at the person’s response from the outside.
- Data. Data is a key player in Star Trek The Next Generation. He is a form of artifical intelligence, utilizing a man’s body housing a positronic brain that allows him to perform incredibly. His toggling back and forth between robotishness and humanity is very fun and, at times emotional. However, when something between the ears is needed, there are few better options. Data plays into finding a cure for dementia, but not the android. Longitudinal studies, such as one I am involved inapt Washington University called the Adult Children Study, seek to gather decades of data on cognitively normal folks (or those with MCI…pre-dementia, if you will) and compare notes on hundreds of factors to better understand the brain and the pathology harming it. We need data. That is why I have been through 4 rounds of lumbar punctures for Cerebrospinal Fluid (Heck, at this point you could call me Mark Spiner if it makes you chuckle…Note: Brent Spiner is the actor who plays Data) and been in dozens of other tests ranging from PET scans, MRIs, muscle biopsies, and countless, headache inducing cognitive tests. This data is the key to predictions, treatments, and a cure someday.
- Drama, even different than expected. Spock, a Half-Human Half-Vulcan who joins his culture in trying hard to suppress all emotion, occasionally, in his humanity, lets out something that is uncharacteristic. See this clip for one example: LINK. Star Trek Strange New Worlds follows Spock at a much younger stage of life when he hasn’t mastered this skill quite as thoroughly. It is a battle for young Spock as you can see here. Emotion, and battling it, is a huge challenge in many with dementia, especially in mid-stage forward. We all understand emotion and experience it, but when it is kerfritz it hits differently….and very hard. Hearing a normally timid loved one scream in anger (and swear) or the opposite can be very unsettling for someone who has known them for decades. Platitude alert: remember, friends, it is the disease, not the person. 🙁 I wish I had a better answer for this to make it easier…but this is one of the most heinous parts of the disease. Meds can help. Progression, sadly, will also “help” as it hurts…and strikes away whet it once gave in overabundance. You think Captain Kirk is an over actor or Spock is too rigid? Flip their personality and way=tch…that is demented Star Trek. 🙁
- Transporting– In Star Trek, if the shield (or the writer) allows, one can be teleported from one place to another within range. This is painless and, minus a quick readjustment period, usually goes off without a hitch. In dementia, your loved one often transports elsewhere…and to different times as well. It is not uncommon to have your loved one not understand that 1. they are in a nursing home and not their house/a hotel/somewhere else and/or 2. think they are decades younger than that are. This, unlike Star Trek, isn’t always without a hitch, but it can be more if we try. Especially as they advance, you will find yourself needing to enter their time and space. Don’t correct them at that point…love them where they are. You will know when that time comes…. Early stage folks know, generally, their time/space good enough and agreeing with their battling confusion isn’t as helpful, but once they have beamed elsewhere and are comfortable, join them. This, friends, is hard, but it beats making them sad correcting them.
- Tribbles– I mentioned them in passing before. 🙂 LINK Tribbles were once “normal”, as so the tale goes, but they were genetically enhanced to reproduce faster…and that they did. Their numbers boomed to the point of not being able to be sustained. Tribbles are sweet and they make the Klingons anxious, but it is their sheer numbers that lead to this tremendous crisis. According to a fan site “Over a period of three days, that single Tribble could account for 1,771,561 more.” Dementia, while not presumably manmade, is also growing faster than our ship can hold…and we desperately need a cure. According to somewhat dated NIH numbers, “From time of diagnosis (mean age of 83 years) discounted total lifetime cost of care for a person with dementia was $321,780 (2015 dollars). Families incurred 70% of the total cost burden ($225,140). Medicaid accounted for 14% ($44,090) and Medicare accounted for 16% ($52,540) of total cost, respectively. Costs for a person with dementia over a lifetime were $184,500 greater (86% incurred by families) than for someone without dementia. Total annual cost peaked at $89,000 and net cost peaked at $72,400. Compared to natural disease progression, reducing functional decline or behavioral/psychological symptoms by 10% resulted in $3,880 and $680 lower lifetime costs, respectively.” Without regard to the critical fact that these people are precious in our sight and in the Lord’s sight, just looking at the raw data screams HELP! We are overran. Add to this that we love these folks and you see the sense of urgency… Six plus million of these folks today and double before you know it. The cost of caring for them will soon be measured in Trillions. The numbers are bad. 🙁
- Medicine and shirt color– Star Trek has a tremendous number of medical options, depending on which series you watch. Pretty much, in most cases, unless you are wearing a red uniform/shirt (and are a stock character), if you are harmed, you can be fixed. However, if you wear red and are harmed, you are likely going to die regardless what technology is available. In dementia, all are wearing red shirts, as of today, but we care deeply about each one of them. There are no stock characters in our world.
- Heroes– Star Trek has lots of heroes. People who give it all for the team. I won’t completely spoil it for you, but practically every major character faces mortality and meld themselves into the phrase “the needs of the many outweigh the needs of the few…or the one.” How do we look at dementia without having a Starving Children in Africa sense of overwhelm? What can one person do? A lot doing a little can do a heck of a lot more than a few doing a lot. Alz.org has lots of options to help. SeniorAge and/or your local Area Agency on Aging does as well. I have asked for money and for help caring and for help in research and I will continue to do so. I know we all have our own concerns…but we all know people with this disease. Calling all heroes. Can you do something else?
- Villians– Star Trek is GREAT at making the bad guy for us to rally around to defeat. That is one of the most endearing parts of the show, in my book. 🙂 While the disease itself is a villian, I would like to highlight another villian: people who would prey on these poor folks. Look after friends and family with the disease. Stand guard for them. There are scammers everywhere. If you see them, report them! Here is one way: https://ovc.ojp.gov/program/stop-elder-fraud/providing-help-restoring-hope Here are some more tips: LINK There is a fresh hell waiting for those who would streal and harm people with this disease. I pity their end…
- https://youtu.be/S6R3MiAv9ac?si=dM2FoSlTcDOmB3-w As we march toward a cure, know this: We are in uncharted territory. When you attend a Walk to Eld Alzheimer’s like I did Saturday, you are introduced to 4 different colors of flowers symbolizing why you are there, then the 5th, a white one, is brought onto the stage, symbolizing that that nobody no one has gone before…and survived. So we fight. We rally. We serve. We raise $. We guinea pig. We find people who need us and be there. We will arrive and beat this thing. Go boldly, friends.
Update: Our Walk was outstanding. Here is the link of you can donate. Thank you to the Alzheimer’s Association, to SeniorAge, to countless sponsors, and to the attendees! Pictures will come soon. 🙂 My Longest Day Runnin’ Til I’m Purple shark jump is in the works. Stay tuned over the next month for those details.
Mom is still holding on. No seizures in the last few weeks. Her lungs are pretty clear most days. I will see her in about an hour. 🙂
#EndALZ
Final notes:
I hear all the time, even from more experienced folks than me, “Oh, she doesn’t have Alzheimer’s…she just has dementia”. Nope…This, friends, is just not a thing. It just isn’t. It is like saying “No, he doesn’t have prostate cancer…he merely has cancer”. Some of the confusion is just a wrong use of terms. There is another somewhat newer term called Mild Cognitive Impairment (MCI) that is what they are likely meaning. It is like “pre-diabetic” but in dementia. There are symptoms, but things are mostly inconvenient, and heading in the worse direction.
Dementia is the big term. It is the syndrome of conditions. The overarching bad guy… The Alz. Association calls it the “Umbrella Term”. Perhaps best said, it is like the word Cancer, except in the memory/cognition issues realm.
Alzheimer’s Disease is the most common TYPE of dementia, among many, many. About 2/3 of dementia is Alzheimer’s. There are dozens of other types of dementia too= (Parkinson’s Dementia, Dementia with Lewy Bodies, Frontotemporal Dementia, Vascular Dementia and oodles more)
If you get these confused, I understand. It can be hard to tell Star Wars from Star Trek sometimes. BUT, the differences do matter sometimes. 😉
