A Letter To My Neurologist about Pain and Dementia

 


Preface: I didn't want to write this. I am largely done with things in the grand scheme but recently had some rather disturbing treatment at the Las Vegas Spine and Pain Center.  I am mentally whipped at this stage of things, feels something like the last nine months or so I will be mentally human and dammit, this is a time I was hoping to rest. Originally submitted to my neurologist at the Cleveland Clinic as part of a semi-annual checkup. As with anything I write now, I am constantly fixing aphasic mistakes so I beg the readers patience. Thank you.


Alas, a number of months back I went to my monthly pain med appointment only to find the doctor I had been seeing for years was gone and a new "Interventionist" was waiting for us. Unlike the previous doctor this one seemed to be that rather dangerous combination of "poorly educated" and "dangerously confident they know all they need to know." 


This character came rolling in quoting statistics and court cases, claiming that the fact that we did not respond to non-pharmaceutical therapy implied we were drug seeking. Then he blew is credibility with me completely by stating with confidence that people in pain have a high blood pressure and mine was low so......yeah. 

CLUE METER #1 For Pain Management "Specialists": Apparently there is some criteria that interventionists like to use for assessing patients as drug-seeking versus truly needing help by the amount of push-back they recieve from that patient when non-drug related therapies are suggested. The very fact that a patient doesn't immediately endorse such a course of treatment is considered evidence in and of itself. However, a few basic things that invalidates that criteria in the real world:

* Many of us patients are classified as in chronic as in continual and long-term pain.

* Unless you deny that, you must then accept that even though you have just met us, we have been dealing with this for a very long time, far, far longer than we have known any current doctor. This is the real world.

* Unless you deny that, then you must also accept the idea that many if not most of the entry-level things you suggest and/or demand to prove we are not drug seeking may have and probably have been tried on us in the past. Since we are here, they by definition did not work.

* Unless you deny that, then why on earth would you expect us to be supportive of something we already know A. Doesn't work and B. Usually isnt worth the pain of the procedure itself. Not being idiots, we are also painfully aware that trying the same thing over and over expecting different results is insane, and using that as your guiding star for effective pain management is Hannibal Lecter crazy. 

This is why we look at you the way we do when you suggest these things; they may be new to you but often they are known, failed experiments to us. 

Compare that with pharmaceutical relief and while it may only cover 60-70% of the pain, experience has taught us that the 60-80%, though imperfect is reliable and most important of all, predictable, neither of which can be said of the procedures suggested to me. 

To any thinking person experienced at chronic pain, its not that the pharma/drug approach is the superior answer, its simply that the alternatives to far have failed so miseably that they seem like the absolute worst answer possible short of death, and only an idiot will intentionally select the worst of two solutions when its your daily life riding on the efficacy of those solutions.



Anyway, what this guy didn't know is that before I was this lump of cottage cheese before him, I was a senior engineer for a medical device maker in Ventura Californa. As part of how this device worked, all of the big pharmaceutical companies came to us to help them get quicker FDA clearance for their drugs. Basically our device was  something that measured almost everything about the human body, from respiratory to circulatory systems, we captured over 256 natural and derived distinct medical signals at one millisecond (1/1000 of a second) resolution. And this device did it for 24 hours at a shot, so we could tell every millisecond of every minute what was going on with a patient. 


As senior engineer I was deeply involved with many of the studies that Glaxo, Novartis, Pfizer, etc were running and too bad for this evangelist at the pain clinic, one was for the detection and classification of pain.  After many hundreds of hours of data were captured from a huge cross section of patients, the conclusion was there is NOTHING that can reliably detect, let alone classify pain. Worse, what little neurological activity was noticed was only in acute patients; all chronic patients and a substantial number of acute patients exhibited no reliable patterns...this was done by folks way smarter than I am and way WAY smarter than this guy at Las Vegas Spine and Pain...

LESSON 1: Do not treat the patient as stupid even if you think they might be, so basing treatment on  such easily-disproven things might work to make the patient do something or it might not and your credibility is shot for all time with this patient.

In stating (and restating as if that made it fact) his notions about pain and the amazing ability of the sphygmomanometer to detect it, this man lost all credibility as a pain doctor in that moment, and from that moment on, every suggestion of his was met with skepticism at best. 

But the point where I knew this man had no business treating me or anyone with dementia was when he stated flat-out that simply because you have dementia doesn't mean you need pain medication.  That statement there showed to me, the supposed layman that this guy I would not let within 20 feet of a patient with dementia. He had fallen into that arrogant trap of reasoning that he had treated dementia folks for pain in the past and since they didn't die, he knew how to treat dementia folks for pain. The first that wrong with that is dementia is brain damage, random brain damage and how hard is it to grasp that something that impairs your ability to think, reason, recall etc might also impair your ability to speak clearly? (Answer: yes, look it up, its called expressive aphasia and I have had it in spades since the beginning. Writing is OK, speaking, fuggeddaboutit.)  So just because he didn't hear them complain didn't mean he treated any dementia patient properly.


The Problem: 

Most pain management doctors treat pain in a very "feed the monkey, watch it shit" level of reasoning. They even have that worthless pain scale, as if you are one level all day, every day. These are not deep thinkers, kids. 


However with you have dementia, pain takes on an entire new level of disability in many cases. Its not that the pain is worse or we feel pain more; if we were normally-abled humans, having to live with what this doctor might consider a mild level of pain would be no problem. In fact this exact level of pain years ago was something I did in fact "live with" and without medication. 


What folks don't get is that we have random brain damage, and when that random damage includes damage to the frontal lobe, the addition of even a mild level of daily pain signals can make the fog and dementia 10x worse than it needs to be, making the difference between a day when I can do things, participate in life and one where I sit staring blankly at the wall. The frontal lobe is responsible among other things for your "executive functioning" or your ability to do more than one thing at once. I don't mean juggling while riding a unicycle, rather the kinds of multitasking you take for granted every day, like walking to the kitchen, while not tripping over things in front of you while listening to music while thinking about what you had to do once you reached the kitchen. Right there was a half-dozen conscious things; add to that the other "automatic" things the brain does like keep the lungs breathing, heart beating, etc, not to mention the 101 little things it does for you like allows you to eat and swallow without having to concentrate on each little swish of the tongue or gnash of the teeth; the brain just does it for you and its your executive function that helps it happen. 


Well now imaging trying to get through your day with about half that capacity gone and whats there doesn't work well at all....you see, letting even moderate pain go poorly treated may be an irritant to you, for me it's like a trumpet blaring in your ear while trying to hold a conversation...the noise just blocks out everything else and you have little idea what the other person was saying. Imagine trying to count to a hundred by threes out loud while someone blew a trumpet into your ear the whole time. You might make it but unlikely without mistakes. 


Side note: This is also why I walk in public with a cane. Not pain, not mere instability, but rather, using a cane slows my pace, immediately easin the load on my executive function in terms of having to waste CPU cycles on obstacle avoidance. Same exact reason why, outside of my own home, I almost have to feel my way through strange places because my brain can't process the visual input fast enough, not anything like "realtime" and so by using my hands and cane I can sort of rebalance the load on my mind and get through whatever it is I need to. Without this, I would not be able to move much at all or I would end up in a fog so thick you could cut it with a scalpel. But direct pain has little to do with it, only the knock-on effects of the pain signals overwhelming my frontal lobe/executive function are somewhat mitigated by the use of the cane, etc.



When so-called moderate pain meets the broken executive function, it makes everything 10x harder, speech is harder, keeping focus is harder, walking without tripping is harder, recall, any kind of mental activity is so difficult it could almost be described as a kind of pain.  When you have adequate pain meds and its truly under control, you can think, do things on your own, you can speak, hear, understand what you are hearing....With the pain, not only is the fog so thick that you just sit in a chair and stare but it seems that the executive function also has some ability to help keep audible and visual hallucinations at bay. When controlled, I rarely have them. Without, everyday and living with that day in and day out burns you out. It's just that damned simple.

Bottom line is that when I am forced to make a choice of treatment here based on guidelines developed for normally-mental people, my real options are few indeed. I know the mental time I have left and I can either spend it going through speculative therapies with mediocre chances at efficacy, at the cost of my mental clarity through my remaining time OR I can use a proven reliable method to manage my pain (and by extension, my clarity of mind) and KNOW that I will be as clear as I possibly can to enjoy the time I have left.  

 

In truth the options for a dementia patient boils down to choosing between a speculative therapy with low chance of success combined with a high chance of exacerbating my fog or one that has only limited success but that limited success is not just reliable, it is enough to let my execute function work as well as it possibly can at this point, resulting in less fog and more clarity of thought. 

 

It honestly is not even a contest; even if the only point of doing non-pharmaceutical pain management were to be acheieved perfectly, in cases like mine, for what possible gain is this? I won't' be running a marathon, I barely make it to the bathroom at times; my body won't be somehow "better", not after a year of constant and soul-draining fog. I really don't see any aspect of this approach even leading to a longer existence. Not mine. Not this time. 

How do I know this will happen? Because it already did; the second appointment this guy arbitrarily  cuts my pain medication in half without telling us that he did it, let alone why.....and leaves it that way for a month or more; It took a surgical procedure to get them restored. But in that time I went from being somewhat useful and occupied around the house, did gardening when I could, watched movies when I could, played games, had conversations with my wife. He cut my meds and for the next five weeks I was a zombie because the additional pain signals let thru by the lack of meds kept me mentally overwhelmed that entire time. It was to me "lost time" and that brings me to my end-point on this.


One other thing that makes dementia patients like me different from the average bear is that unlike most folks who have lots of time to heal, rehabilitate, etc, I don't have that. Right now, death is not near at all but I also know for a damned-solid fact that if things continue in the current direction, at the current pace, I will be a vegetable by Christmas or so. My short term memory will be gone and the fog will the constant enough to make any attempt at thought a failed experiment. So I have the time that I have before me and if keeping a clear head for as long as possible means taking pain meds, then thats what needs to happen. I can't go to therapy for six months on a "maybe" it will help. I know I live in Las Vegas but damn those odds suck. I want every minute of this year I can get and I will aggressively oppose anyone who stands in the way of that without a damned-good reason, and definitely something better than I have heard from my pain management doctor. He is what he is, a simple sports medicine doctor and maybe its not fair to expect him to think and clearly recall neurology 101. I don't know and can't say for sure; after all, I have dementia.

One more thing I wanted to add: this is not purely about pain; in fact nearly anything can derail the executive function once things are bad enough, from a radio playing in the background to the urge to pee all of a sudden. Difference is, I can control the other things in my daily life; the control of the pain lies partially in the hands of someone can't but need to count on. 

****************************************************************

Writing this took months. As for of the progressive dementia, I get fewer and fewer minutes each day where I have enough clarity to attempt something like this, even piece-meal. Thus it may seem disjointed at places; again, I wasn't up to this but needed to in case others run into people like this. I know it won't help me a whit but if it helps even one other patient, if it helps even a single doctor to consider the whole patient, then in the end I consider it a win.

It took not a little amount of ...not pain but it left me quite ill on more than one occasion. Sad fact I learned is that a side-effect of over-whelming my executive function usually results in nausea. Kinda sucks because I quit drinking long ago and thought my hung-over days were behind me. Point is, this wasn't easy and frankly I didn't want to do it. However it was pointed out to me that even though I am not aware of it, others are in fact reading these words and getting some good from them. Given the catch-22 nature of this (if your dementia is bad enough, you cannot explain your pain to anyone, let alone a stranger and so your pain actually gets worse with your dementia) I figured I should try to get one last thought out. So here it is and may be the last but hopefully it will get someone with an education to understand.

UPDATE: I found a YouTube video I apparently made a few years ago that tried to demonstrate many of the things described in this article, tries to give the viewer a sense of what its like to have moderate pain and dementia...






Peace

Jeff

Comments

  1. This needs to be published! It sounds like the notes I found from my mom when she knew something was happening. We are only wholistic now.
    This gave me an insight on how it all started. Thank you so much for writing this. Your words will not be forgotten. Sending peace and hugs your way.

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    1. Cheers and thanks for reading. Last year, I could write this in an hour and it would have been so much smoother. Now I can just do it in tiny bursts of clarity, when it strikes (and if I am in front of the computer and if I am rested, etc etc). Heck, read anything in here for an example: https://www.livingwithlewybodydementia.com/p/the-demented-perspective.html ).

      Still it continues to amaze me just how little I knew about dementia before I got it myself. It is both far more and far less than people imagine. Actually can be powerful if you take control and use it properly. Seriously, don't like what you are watching, say a 3 hour documentary on geese or something? Blink and its gone, three hours later and the thing you hated is now history. Of course the kink in that plan is that is also 3 less hours you get to enjoy on this planet but hey, no plan is perfect. Smile.

      BTW...not to seem dense but..what exactly do you mean by "wholistically"? Is that related to Holistically? Only more whole or something? Not making fun or anything, I really don't know. That doesn't have anything to do with directed dreaming does it? Even tangentally? Little late now I guess but could have used a good source on this a few years ago when I was setting up my retirement cottage...https://www.livingwithlewybodydementia.com/2020/03/my-steps-down-path-to-my-retirement.html

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  2. Thank you for taking the monumental effort to write this, Jeff. I would like to share it to try and help others. Hoping for good days ahead for you. As much as possible, anyway.

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    1. Greetings Donna, and thank you for your kind wishes, not to mention your more than charitable words for the article itself. If you wish to share it, that would make me very happy, particularly if it helps someone, perhaps a caregiver understanding their charge, or maybe help the patient him or herself understanding what is happening to them.

      However it would also please me as a dementia patient for one simple reason: as your condition progresses, you find yourself able to affect the world around you a little more each day, until that day comes when you realize with what little value you actually contribute, you might as well not even show up. Kind of like the person who it doesn't matter if they show up for a party or not; they are not missed, their absence is barely even noticed. This is how it feels when what your brain has to offer is ...well to be blunt, worthless. Thats a rough feeling/realization. But Donna, I am extremely easy to please; ask Beth (grin). In my mind, if even one thing I write here helps even one person I never even met, I win.

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