Hi. My Dad has Alzheimer's, more specifically we were told it is Lewy Body Dementia, officially diagnosed in January 2018.
He has been on Exelon (rivastigmine) transdermal patches for a year or so now and we were told that they are supposed to slow down the progress of the disease.
He sleeps most of the day and often looks as if he is fighting to stay awake. Basically this medication seems to be having a sedative effect and he seems to be slipping downhill quickly. We wonder if changing to a different medication might help him be a little more alert.
Does anyone have any thoughts on this, or a similar experience with this medication?
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Welcome to the community. Yes, it would be a good idea to talk to your dad's physician about changing medications to help him be more alert. There are a few people in this group with lewy body dementia, and they might chime in as well.
Actually this does bring up a poser for me and maybe you can help with this. I am not on or have not been on the drug the OP mentioned, the CBD/cannabis are working fine thank you, but something the poster said made me wonder: They have the patient on a patch which is for AD (of which LBD is not a "type") that is a constant release of a predetermined amount. My question is, what effects have been observed when giving the same dose to a normal person over time? Because the way LBD cycles, about half the time that patch will be treating the worst parts and the other half, over-treating the crap out of the patient, it would seem.
I will check this with my neuro next week when my own drug study starts...
Hi. Thank you for your post, you have made some very interesting comments.
We understood that the drug is meant to help by slowing down the overall progress of LBD, not necessarily treat immediate symptoms.
My Dad is on the slow release patches as he has a Zenker's diverticulum (a small pouch that has developed in his throat) where swallowed tablets would likely get stuck.
The drug does come in tablet form which could possibly be ground up. Do you think it would be better if he had the tablet and got the whole dose in one 'hit' rather than slow release as you said LBD goes in cycles.
I wonder if the patch releases steadily for 24hrs, or maybe if it starts to taper off after say 12hrs. Maybe he'd be better applying the patch in the evening before bed if it will make him sleepy rather than first thing in the morning as he currently does.
If you have been told anything actually slows the progress of the disease I need to double-check this with the Lou Ruvo Brain Ctr here in Vegas as the current understanding is there is no treatment for LBD and symptom management is all you can hope for as far as medical science is right now. If you are in England maybe different things are available but for me, and for those I know, there is no treatment, cure or anything that actually slows the progression to any measurable or quantifiable degree. They can barely even *measure* or assess the progression aside from the use of expensive PET scans (too expensive to do often) or brain-dead quickie neuro-psych tests (which are too brain-dead to be useful for anything more than the most wild approximations of your mental state). So other than the rather subjective "I feel better today than yesterday" for which I have CBD and cannabis, I will be really interested to see how this claims to slow something like LBD...
BTW off topic but only a little; your dad is precisely the candidate I would love to try some of my 18:1 CBD on. If it reacts as it has for others and specifically for LBD-others, you and Dad might be in for a pleasant surprise, particularly if he is in that state you describe. I can point to alot of theory, I can point to alot of anecdotal and empirical evidence but I am an ex-engineer, not a doctor or researcher, not anymore. I know this may be tough in this situation but if your dad has executive function issues, this *really* helps that, does in me big-time, takes me from being a couch potato to (for example) gardening or things like answering this board, email, etc.
Music (used to play blues guitar myself until LBD shot the coordination to hell); look not just at CBD but CBD:THC combinations; CBD alone simply doesn't do enough. It is the entourage effect as the kids call it now; even the NIH has recognized the link between CBD and THC when reversing learning disabilities in mice (have the research around here somewhere) but what I have found more directly in humans (well this human) is the CBD in right proportions restores not just learning but curiosity (essential in learning) and allows me to engage in life more....wife claims it gives her "the old me" back for a time.
Hey sorry to be the "one more thing" guy but if your diagnosis of LBD is relatively firm, keep in mind that one of the strange quirks of LBD is *many* of the meds used to treat other dementias actually have the opposite effect on patients. Not all react the same way to all things but like anti-psychotics can make us crazier, etc also pain relief is problematic for the same reason. I am only reminding of this and that this could very well be afoot. The med you mentioned may have no or extremely rare instances of sedation IN NORMAL FOLKS but in us, its a crapshoot....
Hi. My husband and I have been reading about the CBD which is very interesting. We wonder if it can be taken with my Dad's current medication. I think he and my Mum are hoping to see the doctor tomorrow to discuss reducing to patches of half the dose to see if he becomes less drowsy.
Here in England THC is not legally available. CBD is legal but expensive. Here the potency is expressed as a %. Would the potency of 18:1 be equivalent to 5%?
It has been really interesting to read all of your insightful comments, thank you! You have obviously done a huge amount of research. We enjoyed your You Tube video on Hawaiian teriyaki tritip! My husband is keen to improve his BBQ skills
Greetings from the idiot-side of the pond. 5% you say? Way more permissive than here were its like 2% or less but anyways the preferred zone for this, the one that hits max effectiveness is 18:1 CBD:THC ratio which for the last batch of oil carts I got, resulted in some 60-some percent CBD and 3.something percent THC, so definitely in your range. Now as for it being used while using something else, I am not sure how to word this correctly but where every other med is a medicine that takes time to work and more importantly, works over time and stays in the system for great periods of time, when CBD is ingested through vaporization, first the dose you need is smaller but most important for your dad, the effects are damned-near immediate; you won't have to keep dosing to know if it will help or not and the degree to which it helps in the first hour will tell you if its worth continuing on an as-needed basis, in a way like something you might take for a sick stomach; you don't take it everyday you take it when its needed.
Here is a link to my blog where there is a big picture on the box with the lab results for my last batch of 18:1. My "magic formula" for this is anything that is 60-70% CBD +/- 5% and 2-4% THC, +/- .5% so still in your range...
I have found several strains that can produce the desired results, many result in good or very good results, a handful though are the ones that can bring me all the way back. These include Ringos Gift, Charlottes Web/Cherries, 4 Ring Circus and Harles Storm.
However like I said, many will give good to very good results so anything you get in that range stands a better than average chance of helping, if its going to help at all. I am just trying to manage expectations you understand. In truth, I don't think anyone who has had something wrong (LBD to PTSD to ADD) has tried this and not come away a believer. It just rewires something for a time letting my brain work better for a time. I am working to get the best evidence and research I have done into the hands of bigger brains than I and its working but it is slow going, what with a broken brain and all.
You said CBD in England was expensive; just curious because living in Las Vegas I feel like WE have the stupidly high costs on things....how bad is it? And can you purchase any derived from (low THC) cannabis? Thats how its made; I have a 20:1 strain growing in the back room right now. At harvest I will take all the buds, extract the THC with alcohol and then concentrate it to hopefully hit an 18:1 ratio. Key hope here is if it works it will last all day resulting in a nice, even but low level amount of medication. The vape pens or directly vaping the 18:1 extracts works great, fast and strong but it does not last and has a definite run-up and calm down phase to it. Its like trying to enjoy the best meal you have ever had while driving a moving vehicle. The RSO version could mean having whole days of clarity w/o constant dosing of anything. Oh yeah as our brothers and sisters across the legalization pond I realize you have not grown up with this culture so just in case you did not know, there is so little THC in the 18:1 that NOBODY, no matter how "new" to this they are will get any kind of buzz or stoned or anything. Promise. There is scant THC to begin with and the rule is anything with a higher-than 2:1 CBD:THC ratio, the anti-psychotics in the CBD cancels out any psychoactive effects of the THC. There IS a feeling of feeling "better" but thats better like how you feel when you finally get an arm out of a cast after 6 weeks or something like that.
Hope this helps. The TriTip is a specialty and I wish I could mail some to you but real TriTip roasts are hard to find even in the Eastern part of this country ...they came from Santa -something in Northern California where ranch owners would shave off the least-sellable bits of the steer to give to the ranch hands as payment. They figured out how to make them more tender and juicy than a prime rib roast and before I had TriTip I thought nothing was more tender than that. TriTip is currently a specialty to California where you can find everything from sandwiches to tacos made from it. The method I use pulls out the juiciest and best taste and the way I cut it, the pieces come of thin tender and succulent. Ask Randy; he visited me once a while ago and I got to make it for he and his missus. However even if you can't get the right cut, make the teriyaki sauce; its magic on lots of things and you can tweak it to be your own, thanks to its simplicity. Speaking of simplicity, that is another reason I can still make it like I used to.
Man I got side-tracked but thats life in the big city I guess...
My Dad saw the doctor today and he is going to probably stay on the half dose smaller patches (which he went down to yesterday) for a couple of weeks. Mum said he had his best day in ages yesterday which was the first day of reducing to the half dose (could have been coincidence maybe).
Mum suggested the idea of taking the CBD oil to the doctor who was very positive about giving it a try. We are just looking into what to buy and where from.
It looks as though the CBD oil is administered as a spray under the tongue with food. We can't seem to compare the strength figures that you mentioned to what is available for sale in the UK. The following link takes you to what we are thinking of buying as a start. We wonder if you would have a look and see if you can make sense of the numbers.
Thank you so much for all of the information that you have shared with us, it is so greatly appreciated, and means an awful lot to have contact with someone in the same situation who is so proactive, and a real inspiration.
greetings. First I am still chasing down that other information, may take a bit to get it done as in for me to hook up with the right people. Next week sometime.
I glanced at the site but got confused and need to sleep and then try again....and what I might do which could stand the best chance of getting things right is to (again, when brain is clearer; I way over-did it again today and paying price) have me write to them with the specifics of what we are looking for. I have worked with other companies in the past to find some specific med or method of ingestion and bet these folks will want to help as well. Let me see what I can do....
Time for tri tip ramen, something I make with left-over tritip....
Hi. That's fine, there's no hurry at all. As I said, my Dad is now on his half dose patches for a couple of weeks or so, at which point he would be about ready to try the CBD oil. (We are trying not to change too many things at once).
By the way, we don't expect prompt replies from you. We fully appreciate that you are dealing with LBD every day as well, so please don't feel under any pressure, just as and when, and if you feel like it. In any case we're pleased to have 'met' you on a personal level, and of course any insight, thoughts and helpful ideas are always welcome
In the meantime, for your interest I can tell you a bit about my Dad. He is now 81, but I have never thought of him as old until recently.
As I said before, he was officially diagnosed in January 2018, although I think we all knew anyway. We knew something was up over the last few years really. My Dad's mum had dementia but we don't know what type it was. Strange thing is, that since the diagnosis he has gone downhill very quickly, Mum thinks that once it was officially declared he sort of gave in to it, who knows.
He's been retired about 15 years, and he used to work as an electrical engineer repairing scientific laboratory equipment in the UK and sometimes abroad.
He is a very resourceful person who used to be able to fix just about anything, and knew the answer to just about any question I ever cared to ask. Sadly nowadays that is often not the case which makes me very sad. He mowed the grass until recently, but now doesn't seem able to do that. In fact he has sabotaged the lawnmower!
When he walks, it is with those shuffling little pigeon steps and his balance isn't so good, he's had a few falls. One thing that puzzles us is when he goes to sit down...he does it VERY slowly often stopping half way, so he's bent over, half standing half sitting, literally frozen for a LONG time. It must be so uncomfortable. Sometimes in this position he has declared that he is in agonising pain, and yet his facial expression is blank...puzzling! There have been numerous occasions when he has said he is in pain but doesn't look it...it's a bit of a mystery. So there we are, little bit of background info.
Music, I just caught something you said above; its times like this that I hate what I have become, or sunk to mentally. Anyhow this may be important...and this is hard tonight but I gotta get this out, even if it makes no sense, you will ask me about it tomorrow and maybe I can fix it. But here goes.
This is about your Dad, maybe the stooping issue but definitely the pain issue. This is hard because I must translate conceptual stuff from my head which screws up anyways but the aphasia is bad now too. I wish I was talking to another engineer, could explain things easily because thats how I frame them in my head and it makes then make sense.
Little LBD theory:
Your brain normally processes alot of information every waking moment, even when you are talking you are also processing what you hear on some level. In addition, your brain sends out thousands of messages or commands to parts of your body, like telling the lungs to breath, telling the heart to beat but also say when walking it sends commands to your feet while processing your vertigo (or lack thereof) in real-time while walking. The brain does alot.
In computer terms, its like all these things (breathing, heart beat, listening, smelling, talking, etc) are all processes in your brain and if so, there would have to by definition be what I think of as a "process manager" or something that manages the tasks, keeps each one running by giving it what we called a "time slice" or a portion of the main processor to work with. The other duty of the process manager in any system is to allow process A to work for a fraction of an instant, then Process B, and so on until all processes have been allowed to "work" for a set time and then put to sleep while the next one operates. Once the end of the process list is reached it starts over at A again. When this is done very fast it gives the illusion of multitasking even though only one process is actually doing anything at any given instant.
This is called Round Robin scheduling in computer terms but why am I telling you all this?
Well, if you understand the above you can imagine what would happen if the brains "process manager" were to be damaged. The part I am referring to is the frontal cortex I believe, responsible for many things, including executive function.
Sorry, one more bit of computer-lore: On any multitasking system but particularly one as described above, what can happen is if one of those processes does something to not yield control back to the process manager is that the rest of the processes are not allowed to run as usual and some not at all. This is called thread resource starvation.
To bring this bit home now, many of us have damaged frontal cortex regions and it sounds like your dad is one of them, like me. I will also state for the record that if there is a way to measure or assess how many things you can keep up with at one moment is a far better measure of decline than anything else not involving a PET scan. So in my case, then my fog is bad, my brain can only manage a few processes and I have seen where if I am to focused on something, I forget to breath. I can be walking to the kitchen with plates of food in each hand for example; I walk slowly concentrating the whole way but there can be as little as a pillow or as much as a wall in my path and I will not see it until tripping over it or walking into it. I could add a lot to this but WRT your dad and pain, it may be in fact true he is feeling pain but not showing it because there is a great deal less to "reflex" that many would think. He may be feeling pain but his brain is just not wasting the resources on showing it. More though, if he is in moderate to severe pain, this will use up some or most of the resources he has to think with and can and will make his speech, walking all that worse until the pain is gone, the resources are freed up and he can think again. Go through this all the time. Also, when the brain is in pain AND the frontal cortex is damaged, its like your brain sends out scrambled messages or messages to the wrong thing...easy example, just happened to me: I was bring two very hot, like boiling Cup of Noodles soups into the dining room to eat...as I approach the table, my right hand grips the cup in its hand too tightly which shoots boiling hot soup all over my hand and wrist, causing intense pain. What is my brains reaction (aside from colourful language)? To tell my LEFT hand to drop the f-ing soup it was holding. Remind: left hand fine, right hand in blazing pain, yet it never released its grip on that cup.
So your dad going to sit down and maybe in a little or a lot of pain and his messages get stuck or sent to wrong limb/whatever. I have seen this in myself after a fashion; I go to do something requiring some level of dexterity in both hands. Add pain to the mix and its like my hands bring the tissue to my face and then each get random commands to pull this way, wipe that way, do everything BUT blow my nose which I have done since age five. This situation plays itself out in hundreds of tasks from buttering toast and cooking food to working in my garden, hundreds of little tasks that you no longer have to "micromanage" yourself like walking, swallowing, breathing and more. When speaking with strangers I can't look them in the eye when listening because if I do I will only see them and not process a single word they say. I look at the floor and I am fine. The idea I am struggling and failing to convey is that he/I/we may have limited or broken process managers because thats what fits what I see (and see going wrong) in my thought processes as this advances.
Not to totally screw you up but two more things about LBD and pain:
1. Already touched on in some part of this thread but if he is being given something for pain, it may in fact be causing more pain. Been known to happen.
2. Another very real possibility on pain (I don't know your dad) is that...this is tough...when you have dementia, even if you remember every bit when you are normal again, expressing it to someone else, even someone who knows you intimately is really hard and sometimes impossible because frankly the English language simply doesn't have words for what I see and experience. None there. So sometimes when something horrid is overpowering me and someone wants to know whats troubling me, I don't have words for it and "pain" comes as close as anything in English I am aware of, so sometimes when sparks are going off in my head, my world turns upside down and nothing works logically for a time, this so goes against what my brain feebly grasps as "reality" that I feel something akin to pain....and since I am in that state anyways I have no desire to recite an essay on what was wrong, knowing no words will suffice...so...pain.
Well, that was an incredible post. I think you may have hit the nail on the head. I’ve read and re read all of the above and it all makes perfect sense to me, SO well explained.
Re the 'finishing the sentence' post, it’s hard to believe that you could have aphasia when you can write so prolifically and coherently. My Dad’s never been much of a writer or a chatter, so we are limited to what little he can say as far as communication goes. I know he is 81, but like I said I have never thought of him as an old/elderly. He is a very broadminded, deep thinking and clever man who would normally be up for anything. Earlier in his life he did climbing and diving among other things. He likes his beer and his whisky, although not so much these days, mainly due to the fact that it is very difficult to get him to drink anything much at all, and I’m talking cups of tea, squash etc which is not good, but is part of the dementia as I understand it. Also he has become a bit of a sucker for sweet things as well, desserts, cakes, biscuits etc. Mum is frustrated because he snacks all day on such things, then has no room for his dinner (quality food!).
Anyway, back to what I was saying. I feel pretty sure that if he were to read what you’ve said above it would chime familiar with him, and I know HE would be able to relate to you on engineering terms for sure.
I am not much of a writer as you can probably tell, but I fully understand what you and Randy say in your posts. It’s like piecing together a jigsaw which I feel I have to complete for my Dad’s sake, because I want to understand him and what he is going through so that a) he doesn’t feel so isolated, and b) I don’t see him in an isolated way.
It means so much to be able to talk to others with LBD, because I have learnt more over the last week on a personal level than anywhere else.
You and Randy are great writers, and I’m afraid I can’t compete on that level, but I love reading what you have to say as it’s deeply insightful, pretty cutting edge and wickedly humorous at times, (all the ingredients for ...A BOOK! Or even a film akin to ‘Rain Man’ or something. I’m serious!) so anyway please excuse my Plain Jane style.
Also, please excuse if my replies are delayed or short, there is just so much to do in a day. It is not a reflection on you at all, or in any way disinterest, I’m sure you realise that. I am totally hooked on reading all this stuff so a BIG thank you for sharing!
Greetings and thank you for your kind words. Speaking of which, your words are just fine as words are primarily used for communication and while you find your words "simpler" or something, the engineer in me says you words are simply a more efficient expression of an idea where I might take twice as many words to convey the same thing. It is all a matter of perspective; I wish I had your more efficient modus of expression because since expressive aphasia makes saying any words hard, saying twice as many as are needed to get the same idea across...
Something I would like to leave you with. Yes there is a stigma attached to dementia, part of which is due to lack of education and people applying Occams Razor to the wrong question: the simplest answer isn't always the truth, and truth isn't always what you end up with once you eliminate all other options.
In this case I am speaking of aphasia or difficulty with communication. Most people know about as much as I did about aphasia, which is sadly what I have seen on TV to date. Now that I have it, I made it my mission to educate myself on it and discovered there are some 15 different types of aphasia. Difficulty understanding what you hear, what you see and what you say are just three of them. Then just in the expressive section (speaking) some folks swap words, some replace words and some whole sentences, that latter being me. I do misorder things often and have a thing where if I am trying to speak and refer to a Chevrolet Corvette, even though I might know the word, it cannot be retrieved and my mind starts generalizing until it hits something I can say like Corvette->Car->Vehicle->thing. Or if I can't get the right word out, my brain starts spitting out words as might be found in a thesaurus under the header of the missing word I can't say....so lots of stuff that is close to what I mean w/o ever actually getting there.
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Dumb interlude but..one of the real devils or demons of LBD is that it can masquerade as many things and so gets misdiagnosed quite often. Or worse, it goes undiagnosed because mum/dad/whoever sounds like their old self, almost. My kind of aphasia is very much like that, my ideas get scrambled when getting out of my mouth. However the gotcha is that while my mouth can speak whole sentences unrelated to my intended thought, those sentences are...its like that are pulled from a giant database of "things I used to say"...so I might say something, say it w/o halting and with perfect diction, it will also be completely wrong fundamentally. So I sounded like myself for a long time while the other demons of LBD were working on me. Which of course leads those close to you to claim you sound like you always have, whats the big deal?
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Fun (?) fact: aphasia affects folks who depend on sign language just as much as anyone else.
As a little closer, just worthless FYI, back before this started, how I type now is pretty close to how I spoke every day before. Now? Now I am hoping that either something helps restore my speech or on the contrary, not lose my ability to express thought through typing.
So I type as much as I can but O Musical One, I do it mostly because when I was diagnosed there seemed nothing out there to help me understand what lie before me. I have been self-taught all my life and so it was only natural to educate myself on this as well as I can, but then I felt a....something (aphasia, sorry) that cannot be denied and so I am kinda dedicated to helping others in this boat understand, if only just a little better. More knowledge and information rarely hurts but being a dumb-ass usually does. So Randy I and I are doing that blog with what we have left in us and it will be there after I am gone to pot(ted plant status), as long as Google lets it remain. It could use some organization, dementia makes that tough but we will keep pounding stories and insight into it for as long as we can, so those coming after us might find it and learn, maybe it might be to simply learn not to fear. When a story comes up that either of us feels might spark community conversation we cross-post here.
I must confess to becoming more and more reluctant to post here, at least the more complicated stuff simply because I AM progressing and I have found that I can often use visual aides to help out my speech or written word. To be blunt, this place allows one graphic at the top but no way to drop single photos (or charts or) in the middle of the text. You can tell when it happens when you find a story of mine that says something like (imagine an image of <something>) here...
As I need more and more graphics to express ideas I cannot with words alone, ideas will become more and more difficult to express here. Oddly I can embed Youtube videos but not pics.
The relationship that you describe between having aphasia, whilst simultaneously having the ability to type so extensively about inner thoughts is so important.
To outsiders, someone with dementia and aphasia will just appear to have severely limited mental ability, as was proven when my Mum attended a local birthday party gathering yesterday (without my Dad), when their next door neighbours asked if my Dad still knows who they are. She replied, ‘of course he does, he just finds it difficult to get words out. He can think properly and knows what’s going on. He’s not that far gone!’, or words to that effect. I think people just seem to assume that Dad is away with the cuckoos.
The insight that you give in your post above is invaluable as everyone needs to know these things if dementia sufferers are not going to be taken at face value and written off by lesser informed others.
On a different note, I was wondering about the genetics and if you have dementia in your family Jeff. (I haven’t noticed it yet in any of your posts). I am just curious, but please don’t feel you have to answer that if you prefer not to.
The insights that you have given me so far have enabled me to feel closer to my Dad and have a deeper empathy for him which means a lot to me, thank you.
I will be interested to hear about the drugs study when it gets going properly, and I hope that you are ok whilst doing it, maybe it could even help, I really hope so.
Greetings; Something you said combined with something that just happened has perhaps lead me to a larger truth. In my engineers heart (or gut) that there is something here, and again I saw it clearly through the lens of engineering. This is what we engineers called a BFO or Blinding Flash of the Obvious. Check this out:
What if like any other non-trivial machine, we humans need a sort of clock pulse or signal to drive everything we do.
Digression: Clock Signal. In digital electronics of the Stone Age when I was in the Army, every circuit had to have a clock signal to drive it. All the rest of the components on those boards were just logic IC chips. If left alone, those chips would do nothing, just sit there. A clock signal for a digital circuit is like a fuel source to drive all of those digital circuits in (say) your laptop. One other very important thing the clock signal does is that not only does it drive the main logic chips, it also keeps all of the chips working in perfect sync so A only sends data when B is ready for it and so on. Most basically clock signal (aka timing signals) is nothing more than voltage from 0-5 volts DC. The thing that makes it a clock signal is that it cycles between 0 and 5v at a predictable rate or "clock speed".
Here is a quick 101 that explains clock signals; it might help the rest of this make sense:
Anyhow, back to our clock signals and digital circuit. I mentioned the clock pulse or signal helps keep the timing between chips and thats true enough but also in situations where two different circuits or possibly devices need to stay in perfect data sync, the clock signal helps with that as well.
By now your eyes have crossed and you are starting to think that grabbing that extra pint on they way home wasn't such a good idea. When my doctors ask me how much I drink, I say none and when they ask I riff on a comedian from my less savory days: Because if I did drink, it would make me SO WEIRD!
Buuuuut seriously folks if you have gotten this far and baked a little of the above into your thinking you are primed for my BFO. You see, when I was being cognitively tested recently to assess where I was at, they threw a new kind of test or maybe a new twist on an old one at me and after acing (well mostly) every other test that had, I got less than 0 on this one. We all know the neuropsych warm-up test where they verbally give you 5 words and at or near the end of the testing they ask about them again to see how many you recall. Well this test took it to an extreme and shot maybe 20 words at me on the screen one at a time for about 2 seconds each. Once one word was timed out it was overwritten with the next one on the screen. This nearly wiped me out. I don't mean the test, I mean trying to deal with that list in the way it was presented, pure hell to my demented mind, so much hell in fact that I remembered zero words and actually mis-remembered wrong ones at the finish.
Here is the thing: I took this test twice that morning with maybe an hour break in between and this worked to my advantage: Having never seen this test before I threw myself onto my sword to do my level best but could tell within a minute I was failing miserably. So the SECOND time I took the test, I still failed just as bad but I took the opportunity to kinda look at my thought processes while this was going on to figure out why. What I saw in my head of the process was basically this:
1. Eye sees word and reports pattern to brain for analysis.
2. Brain does basic pattern-matching to determine what objects the eye is seeing.
3. This information is then presented to the brain for storage, analysis, whatever you need it for.
However I think my dementia has made *my* clock pulse run a bit or a lot slower and that is resulting in the following:
1. Eye sees word and reports pattern to brain for analysis. Slower clock means this process takes about 30% longer than normal.
2. Brain struggles with pattern matching but eventually does find the right pattern or in this case, word. Slower clock means this bit of data crunching takes another 30% longer to complete.
3. Brain is presented with the results of #2 and the information is stored in hopefully the proper place. Slower clock, add 30% on.
So imagine this basic process going on while being presented with one word after another for two-second intervals and no break between words. What I saw happening in my head was this. By the time we have completed step #2 in my model, the initial word has been replaced with the next one. However I am just getting to step 3 on the last one and since I know the one on the screen will vanish soon, I abort (and instantly forget) the first word to hang on to the next. This process went on for 20-30 words it felt like. Pictures too so images vs text didn't make a difference and in fact supports my clock theory above.
So if you can follow this far you can plainly see a few things like short-term memory loss isn't necessarily actual memory loss; in the example above I didn't even get to make the memories in the first place so when I could not repeat them back or identify them, it wasn't really memory loss now was it? At least, not as simple as memory loss.
The slower clock signal explains so many things too. You remarked upon the fact that I claimed not to be able to speak well but I wrote well, an apparent conundrum but its really not that hard to see. What do the following have in common:
List 1:
1. Writing documents
2. Writing email
3. Creating a picture on the computer
versus:
1. Speaking in person
2. Calling on phone
3. Calling on a SIP service like Skype
The answer is all the methods of communication in list one are not time-sensitive and I can take my time getting them done correctly before sending. This removes pressure which allows my brain to work (better). One other thing everything in list 1 has in common is that none of them involve someone standing close and waiting for a response.
The second list, every one of them involves someone watching or at least listening for your half of the conversation.
True fact: I can do everything in list one reasonably-well.
True fact: I can't do anything in list two and if I try, my expressive aphasia gets to bad and my head gets in knots that I tend to avoid everything in list 2.
So if you view it that way, I feel like I can write the closest to how I was because when writing, no one bothers you and you can take as long as you need to get it right or at the very least, clear. There are no other competitors for my brains time-slices. In speaking in real-time to people, not only can I not process what I hear fast enough to follow the conversation, when I attempt to verbally join the conversation my aphasia kicks in and ....OK Music, being from where you are and knowing of British fondness for travel, I have a question for you. It concerns traveling to countries where the language is not English. However being a good traveler you find some books on the language and learn as much as you can before going. However once you get there with your family, in the place that speaks no English, your all sit down at table of the restaurant. The waiter comes to your table and you proudly provide sustenance for your poor starving tribe by using your newly gain linguistic powers to order for everybody. You knew this was coming and you practiced, practiced, practiced. The waiter arrives and everything goes to hell from there. You very suavely rip off the entire order with perfect diction in a foreign language, using about 80% of the vocabulary that you learned in the process. However the waiter sensing a fellow speaker turns around and rips off a few paragraphs in that foreign language because he things you can speak it well. However his use of the language not only resulted in much of it going over your head but it puts you in brain-lock as well, as your family along with the waiter stares at you, awaiting your response. Inside you are wishing you hadn't had that fourth pint at lunch.
But check out what just happened when the waiter spoke to you at full-speed for him: You caught a few words or phrases here and there but not enough to piece it together because you could not process it fast enough not to get overwhelmed (resulting in brain-lock) and once overwhelmed its like your brain has a cramp that won't abate. If you have been to a foreign country with a smattering of the language, I know you know what I mean by all this. Sometimes we keep up with you or conversation in general but just as many times our brains won't allow it.
So based on the above I would love to do a study to research into accelerating ones "clock signal". If this were possible the quick test would be to see how well I can keep up with a single conversation and then a group of people....plus if our brains were only sped up by a few percent I bet alot of our normally debilitating symptoms would cease to be symptoms AND since the brain isn't having to work overtime to understand things, it can spend more time appreciating things in my life as well.
OK, what time do they hand out the drugs around here?
So with regard to the 20-30 words test and your analogy of brainlock (my partial grasp of a foreign language, which made me smile), you are sort of saying this:
When you did the word test your thought process was still working correctly, but working slower, too slow for the test. The thought process itself had not been damaged by the dementia, just slowed down, so it was not as quick as your average Joe. (Incidentally I wonder how average Joe would have done at the same test?) So a person with dementia needs more time to carry out a thought process which can still be done successfully, especially if the activity is not time sensitive.
However certain situations such as the 3 points in List 2 create added ‘pressure’ so that the thought process in hindered/wrecked by a sense of ‘panic’ (say if someone is standing there waiting for a response). Then brainlock kicks in, and the mental task is abandoned giving an observer the impression that the person with dementia is ‘dumb’. Understandably these situations want to be avoided, because as we know other people often have no patience and can be shockingly unsympathetic. I’ve seen it happen to my Dad. All the more reason to educate people about dementia, as you are trying to do.
I remember you saying in another post, that you thought it was sometimes HOW you process information coming in that was at fault, and not how it was being stored or retrieved.
This is not exactly the same thing, but it puts me in mind of my maths lessons at school. I was in the top class, but maths never came naturally to me. While it was being explained I would sit there worrying that I wouldn’t understand, consequently I wasn’t listening properly so of course I didn’t understand. Luckily my Dad would go over it all again with me at home, and as the situation was no longer time sensitive I could learn it.
I followed a link to one of Christian’s Brain Tests. You might have tried it. Similar to your words, 6 single numbers flashed up, one at a time, each appearing for 2 seconds or so before being replaced by the next. Then you had to type the 6 numbers in the correct order on a keypad. Okish. Then the same thing happened again (different numbers) and you had to type them out in reverse order. Painful. I found that if I said the numbers phonetically to myself as each one appeared, I could do this, but not if I just passively watched them go by while trying to remember them. Weird.
I have more of an arty farty brain, so if I can keep up with you Jeff I consider myself to be doing well!
So you need to find a way of speeding up your 'clock signal', it makes sense I wish I could be of more help!
Music; not anything particularly witty but its funny to me. You say I write well, I think you do, you consider yourself more of an arts person yet you excelled in what you refer to as "maths"; always wondered why some folks refer to math as plural but whatever. The funny bit is this Music; I was an pretty senior engineer at some pretty big places so it establishes I could do the job and do it will enough to stay employed all thru the dot-com bust....yet for all that, I have a math-proof brain. The closest I got the any advanced math was an introductory Algebra class that I breezed thru with a D- (in our school system, that is a sucky grade, like you shouldn't really pass but the teach felt sorry for you or more likely doesn't want your stupid ass in her class again next year.
Regardless, I have always been a Olympian in Math Stupidity. Like Jedi-level powers of not understanding the simplest bits of math. I am fully self-taught WRT the engineering thing and where it required math, I found another way around having to understand it. This lack of math actually relates to my aphasic comments below, in the same way I figured out on my own ways around math in a math-heavy profession, I am putting that same effort into finding alternative methods of communications for down the road.
But Music I have always been envious of people like you with your ability. I did well in my profession before I started needing a drool-cup but sometimes I have wondered what I might have done in life if I had half of your math ability....
Music; trying to answer all, tough to think sometimes when your brain is out of warranty. First you got it pretty close in your understanding; I would like to tweak/correct one thing in there, its not panic that is induced by list 2 although having someone standing by gives every impression you are expected to answer on to spot. No the thing you missed with List 2 is not your fault, you would only know it if you were me, Randy or your dad. With aphasia, every word, every sentence, every completed thought represents a tonne of work. If reciting something from memory and getting it right is hard, doing it with aphasia is like you doing it whilst jogging or exercising. Its really close to that in fact.
Something else I must say, tho this thread has gotten so large I can no longer recall where but you spoke of taking your dad to some show or fair or festival or something. Um...if you are doing it for your dad, there is a good chance he is doing it for you, probably since he cannot explain he doesn't want to go. I thought I read somewhere you said your father had both aphasia and damaged executive function. If so, like it is in me, it can lead to me quickly becoming overwhelmed mentally and if it goes on too long, it can take me days to recover...so I stay out of crowded, busy events, particularly ones where I am sort of forced to pay attention. Even if he goes, I bet he will respond well to some time-out periods where he can decompress.
One other thing I want to convey before I pass out, about aphasia. As silly as it sounded in the movie, what afflicted Albert (Stephen Fursts character in The Dream Team) was obviously a form of aphasia.
Where Albert seemed to speak only using fragments of radio and television broadcasts, in my case my general speaking might be on-topic, but my ways of wording things are not constructs of my brain but rather fragments of books I have read and strangely, things that I would normally say anyways. They are just the wrong things. But in the same way Albert says something that is literally what (for example) a sports announcer said, figuratively, conceptually Albert is conveying data just fine. In fact its not unlike having to translate from English to a second language on the fly. So I totally get Alberts aphasia...
Hmm, I seem to have given you the impression that I was good at ‘maths’ (I think we add an s because we see it as an abbreviation of ‘mathematics’, anyhow...). These days I can’t even do simple mental arithmetic in the supermarket! I think I did ok at that subject because my Dad was working me with a friendly crank handle in my back, otherwise I’d have been a little lost soul who couldn’t add up
Like you, my Dad was self-taught, in fact his Dad would not allow him to do any homework in the house. (Wehey, dream parent!) My Dad must have spent most of his time in trouble at school. I think he would have got on well with you Jeff, in another time, another place and 20 years younger, over a beer though, not in this forum as he is no writer. Now though, I am wishing he was.
It’s funny, when I used the word ‘panic’ in my last reply I had a gut feeling that it was the wrong word, and I did wonder if you felt panic or not. I get the idea about it being a tonne of work to get words/sentences out. Having not experienced that myself, I have seen my Dad trying, really hard sometimes, and then just saying ‘pah’ and wearing a look that he has given up.
Thank you for your comments about taking my Dad to the outdoor show, what you said about him becoming mentally overwhelmed, was as we suspected. I wonder what your thoughts are about us taking him on a week long holiday (in a couple of months) which has been booked for a while and he was really keen to go. It will be the third time of staying in the same cottage as last year and the year before. He’ll get to do one of his favourite past times, eating crab sandwiches on the beach. It’s not a particularly busy place. It’s about a four hour drive. Everything can be taken at a really slow pace to suite him. Do you have any advice about how we could make the experience as comfortable as possible for him, in terms of adjusting to the different surroundings etc. You might think we’re mad taking him at all...
I read your post ‘Todays adventure or idiocy: exploring the fog’. I’m so sorry that you were having such a rough time. I’m sure many people afflicted with dementia reading that could identify with your experience, although I don’t suppose many would be able to look the monster in the eye with your analytical brain and put it all into words the way you do. I took it all in and I felt speechless. You make it so real for bystanders like me.
Please don’t feel pressured to reply to me at length if it is wearing you out. Like I said, I am hooked, and I hope I can at least offer some friendship and support in all this.
Music; I feel I would be remiss if I did not point something out to you, as you have become interested in things. While your words are kind and well-intended, Randy nor I come here for sympathy; not sure anyone who does. This is honest-to-the-deity stuff. I don't wish to seem like my world is particularly harsh; in fact you will find I take a maybe strange view of this whole dementia thing....I wish to submit two articles I have written here on the subject, check them out and see if you come away without some changed ideas...
And you may never look at your father the same way again when he zones out next time. I am looking at this like one last, grand adventure, one only I can participate in.
So I guess I am saying weep not for Jeff; I face this not with trepidation, fear or even sadness. If anything I feel anticipation, curiosity and wonder. Save your tears for the patient with a bad or merely uncaring caregiver; the caregiver who agonizes over doing the right thing for their charge but simply doesn't know enough to actually help. Most of all O Musical One, save some tears for your father if he hasn't yet seen what I have.
I feel that I have a potential ticket out of Hell. Sure, it is an imaginary ticket to be sure but consider this: the place that I go to is nothing but imagination. In that place, imagination is mostly likely considered coin of the realm.
Music; I didn't mean to be so curt; I have problems getting things to translate sometimes and can't always tell when things make the kind of sense that I want them to. I wasn't in any way demeaning your sympathy; in fact this world could use more of that sort of thing, IMO. I guess what I was just trying to say is, feel sorry for those that are not as lucky as I am. And I do consider myself lucky in certain ways, no doubt about it. I am living a relatively comfortable and at times, fun existence while this MCI stage plays out, I know statistically I will probably die in my sleep and w/o endless agonizing pain. In fact in things play out as the NIH thinks it will, I won't even be aware of my passing. The key thing is that I make sure those around me understand how I feel so they don't kick their own asses thinking I am in misery/endless agony/endless nightmares/hallucinations/etc when none are likely to be true. In fact I view my mental passing as a final step on the journey, with death being the place that I finally arrive. I don't feel cheated, I have had great things in my life, I don't feel unfulfilled, I have very few regrets and no past ones like things-never-done, that sort of thing. I have lived around the world, loved alot, done alot, met some the coolest people in many countries, made many friends, and I have done some things to sorta leave my mark on science so I am good.
And because of all that, I feel lucky, because I cannot think of a worse kind of "pre-hell" where you have all these regrets about stuff you didn't do but now you are too brain-dead to do them...that is real regret. And I feel sorry as hell for anyone living with that kind of regret...
It’s ok Jeff, all is well. I realise you don’t want sympathy. I hadn’t really thought of it as sympathy, more of a virtual companion, an unsympathetic one of course.
Dementia is a heavy subject, and it is not always easy to know what to say, especially to someone who has it (and that includes my Dad). You are comfortable speaking about it at great length and from so many angles (which is good for everyone here). I am not uncomfortable speaking about it, it’s just that I have very little knowledge or experience to offer. When I look at my Dad he seems to be in a sorry state, barely able to see out from under his eyelids much of the time with only a few words to utter. (You can see I don’t have much to go on). That makes me feel sad, like he is just slowly slipping away in his little ‘boat’, coming back to shore now and then, and I do feel sad that anyone has to go through this and that’s just me, sentimental old thing. I think we could be on different places on the emotional spectrum, mine’s a bit of a roller coaster.
But when you ‘report back’ about your experiences it casts a different light over it and makes me wonder, what IS going through my Dad’s mind? Yesterday I went round and he spent ages looking at something on my head and then after an awkward silence said ‘I like your eyebrows’. That remark was SO unhim, as he would never comment on my appearance. I wondered what he was ‘seeing’ / thinking.
Anyway, I have read a lot of your posts and I have a pretty good handle on your outlook, and I think it is a very good one, and as I have said I think you are an inspiration to many people on this forum, including me.
Music; I so totally get your....not really frustration, although I am sure that is there as well...no...more like a longing...sorry. Had hard day at study and not making good sense. Sense, just not good sense. Had this problem in high school as well. Anyhow, what I am trying and failing to say is that I get it, when you look in your fathers eyes you can maybe see what is trying to get out, or maybe just that something is, something more than what the rest of the world sees. But you see it, don't you. I know you do because I occasionally sit on the other side of those eyes and *I* know whats going on. You have so much more to offer than what comes out but, to be the gross American, its like you have mental constipation. I will let your mind draw the rest of that imagery. I guess not to put too-blunt a point on it, sometimes forcing helps but most times not so much. And yes, its alot closer to that analogy of having a less-than-perfect command of a foreign language in a foreign country. You know how it is; you are with some shop-keeper, both sides struggling valiantly to overcome the language barrier, at least enough to make a sale but its at that moment, that instant where you and the shop-keeper reach a point of mental exhaustion from the effort, looking sadly into each other eyes while trying to will some understanding along with it....but you know it just isn't going to happen.
It is for that reason I have been fooling with some non-standard methods of communication that by-passes the usual channels in the human brain and no not ESP etc. More like a way that the patient can take time and sort of semi-visually semi-conceptually construct not sentences exactly but more like complete thoughts that the system then interprets into speech. Still working on it but my brain is kinda broken so its taking time but I see the time coming for myself that you have with your father now. Now there are two possibilities: 1. There is no one home, in which case there is little to be done OR 2. There is your dad, myself, my OLD self inside struggling to be heard. If its #2, then this sort of system should at least let the outside world know there are complex thoughts going on behind those sad and foggy eyes....I have already decided if I can't get traction fast enough I will just turn it over Google or something....
Sounds as though you need to invent something along the lines of Stephen Hawking’s computerised communication system, bit of an undertaking.
It’s so important though. I read something on the eLearning website about pain. My Dad sometimes says he is in pain although it is not always obvious why. According to that website, pain can become an issue, particularly in the advanced stages of dementia. The problem being that patients can be in a lot of pain, but there can be barely any external signs of this at all, and therefore it can go untreated.
Apparently I read that they can use a special observational method that is sensitive for detecting pain, called PAINAD, for people in advanced stages of dementia. But feelings of distress can be confused with feelings of pain. So it seems complicated. Your potential invention could be a vital means of communication, maybe if it could somehow read interpretable brain activity, I don't know. Sounds like a project...a big one...hmm..
Music, I checked with a colleague in your country who works with dementia patients, explained your situation and she suggested the following:
** Ok, I would suggest she does the following:
1) Gets hold of the DVD ‘Breaking Through Dementia: Conversations that matter’ from 360 Forward.
2) She might like to view my dementia eLearning course (it’s beginners level for care staff and the public) scie.org.uk/e-learning/deme...
and the course called ‘One Page Profiles’ (also published through SCIE eLearning). In One-Page Profiles the ‘Examples’ tab shows examples of using activities to help people living with dementia lead fuller lives.
3) Looks for videos by Naomi Feil on the Internet, like this one youtube.com/watch?v=CrZXz10... which is about communicating with a person with advanced dementia.
4) Looks into using music with him. Favourite music wakes up a part of the brain that then sometimes switches on speech, even in people who have not spoken for a long time.
This is just a quickie message as I have been spending some time this evening looking at the above suggestions. Thank you so much for what look like amazingly helpful resources. The video above is so intense. It's really good to know that there are people in this world who give advanced dementia patients that kind of one to one therapy/attention, I don't know what to call it. It's very moving to watch, and pretty incredible. Dad does that thing with his hand, like the lady in the video where he sort of shakes it, sometimes he does it while holding my hand. It's interesting to see that explained. This is a bit of an emotional rollercoaster, but I can see that I'm going to have to go through it to help my Dad. I can see how easy it is to misinterpret movements/behaviours etc if you don't have a trained eye. I really appreciate you taking the time to find those things for me. I made a little start with the eLearning which looks really good. Interesting to see the chart that shows each type of dementia and the typical symptoms associated with it. I can't thank you enough Jeff, these things do look as if they will really help me to understand what is going on better.
By the way, I ordered the CBD oil today, a dropper under the tongue. Hopefully might arrive tomorrow. I am not hoping for miracles, but watch this space.....
Music; firstly you are more than welcome. Secondly I just recalled the single-most amazing video I have ever seen *as a patient*...it is called Dementia from the Inside Out or something similar and it gives the viewer just a taste of what some of the main symptoms of dementia, this time I think from the perspective of Alzheimers, but whats its like from the POV of the patient experiencing that life. So many times watching it I was nodding my head with a smile on my face; not all. It is an aggregation of the main symptoms in a fictional patient. Doesn't matter; the experience, the feel is pretty damned exact. In fact unless memory fails me (insert joke here) I think Janet did the scripting or something on this one too...if you haven't seen, its worth a watch in my estimation...
Very few things I personally recommend but this is one, and its free. Oh hey good luck with the CBD, I am sorry I was not able to follow thru with it, life and the study caught up and took charge of life for me....its ironic, because its the big fails you learn to swallow and not go axe-murderer on someone, its the small fails that set you off and what makes me cackle like the Joker in Batman is when normal people give me shit about getting angry over breaking a glass, when if they only knew what I spared them, sacrifices far greater than any injury they feel from hearing me refer to the glass' parentage in a disparaging manner.
The eLearning course actually starts with the video that you recommended above, and it does have a big impact. I worked through the rest of the course and with regard to my Dad it is really helpful.
My Mum has been offered the opportunity to go on a course with other carers of people with dementia, but I think she is still only really just coming to terms with what is happening to my Dad, and she’s not ready for that yet. But the eLearning course would be easier for her as she could just dip into it at her own pace when she feels ready.
I already knew that music is meant to be a good mental stimulant. Mum has tried playing CDs that my Dad likes, and after he had a fall recently I went round and played the piano for a couple of hours to be with him while she was out. He really enjoyed that as he is musical himself, but he doesn’t play anything now. I think I remember you saying somewhere you’ve been finding it more difficult to play the guitar now days – Blues I think you said.
BTW, we started with the CBD oil today. (He is still using his half dose patches as well). I think the CBD is a relatively low dose so we may need to step it up. I was only there for a few minutes after he took it so awaiting feedback...
Hmmm I did not know that about the video. In point of fact, thats how I met Janet; I independently found that video and was so impressed with it that I wanted to try and make an LBD version of the same thing, as there are some subtle but important differences. However as part of that project I sought out the makers of the video, introduced myself to Janet who had a hand in making it, turns out Janets mother had just passed from LBD (from my perspective this is a sickeningly shrinking world) and so we sorta connected was we were both geeks/nerds/whatever. Anyhow we have been fiddling with a number of software/tech things to help the demented...and BTW I use that term with a smirk since I count myself among them....but Janets good people. Sadly with the stuff I guess Boris is his name is doing there, charities that work on this kinda stuff I falling out one after another do to some shennanigans going on there. I guess you would know more than I do; I can't even explain my own government, I have zero place trying to understand anyone elses. Sorry, digression. Point is both sides of the pond the organizations that help us are in trouble because as messed up as our lot is, as horrid or mind-blowing as it is, its not even in the top 1000 things going wrong right now...I know the squeaky wheel got the grease but what about the crazy one?
Music, yes its the blues connection that does it for me. And one thing about the best blues is that it truly is great at is keeping your personal woes or "blues" in perspective and as a result, makes them easier to deal with. In fact the words and spirit of blues legend Robert Johnson get me through my darkest of hours. You know that part of the video when the lady is obviously laying in bed, obviously supposed to be going to sleep and just as obviously can't and is in little control over her anxiety. I know that feeling and its the worst because unlike many other problems, this one has no apparent "fix" that you can find when fogged in bad. As a result you can spend alot of hours, feels like an eternity, trying to figure out whats happening to you, where is everybody, why does my bedroom look like a dungeon with the lights off, what am I supposed to be doing...how long do I gotta lay here...I'm scared, I don't know what to do, I dread someone becoming hurt due to my lack of mindfulness, I can't find a way out of this, will it *ever* end?
Yeah those are the tough times, the times that work on your soul like a cheese grater...the blues for me is incredibly soothing at times like this for two reasons really:
1. As already stated, blues music tends to put almost every imaginable kind of woe or blues into a perspective that we can all deal with. Loss of love, home, family, job, hell even your dog can bring the blues.
2. Like the best musicans in any genre, blues artists tend to be incredible story-tellers so not only to they catch you with the tune, they can suck you right into their world thru story told as song. They are very good at this and Robert Johnson was one of the best.
Suddenly I might still have my blues but its like they are happening to someone else, far far away and for all the things Robert might sing about, *my* particular blues don't exist in his world, making it a pretty sweet place for me to hang out.
Hi Jeff. Well the great thing about music is that there’s music for every mood, occasion, culture, whatever. I never understand when you come across that rare person who says they don’t like music, I just can’t imagine that.
I sort of envy you being able to say that you specifically like/ or are dedicated to a particular genre or artist, and also play music in that genre yourself. I have never really been able to settle on anything in particular. I can play the piano, saxophone, oboe and bit of guitar among other things, and I now just teach the piano (I used to teach sax and oboe as well) but decided to keep it simple. The grass always seems greener as they say, hence rarely being able to focus on one thing. I enjoy finding little musical gems on the internet, particularly world music that no one has ever heard of. I love the kora (sounds a bit harp like) in particular Sona Jobarteh who I have discovered recently, the song ‘Gambia’ is lovely. In any case, music is a therapy of its own kind, no matter what you listen to, or what you are playing...
. Music; woof. My father would have loved you and probably traded my ass in for yours when we were mutually kids. He taught High School Band plus played professionally in a classy dance-band (Glen Miller era stuff). He wanted me to play with him so bad so he ran me thru coronet, drums, sax and...one more I forget. Guitars were not real music to him which wasn't a big deal; back then I had no particular urge to play guitar either. Hey he wanted me to be a Stock Broker as well, the fact that I am still breathing and not hanging from a noose gives you the clue how that turned out. Don't get me wrong, I loved my dad, he was the sweetest guy I have met in this lifetime....but maybe he was like aspbergers or something because he was flat-out genius with narrowly-defined things like music theory, of course playing well because he player pro for 25 years. Great with stocks, bonds, investments and a natural-born bullshitter/salesman. However he was dumber than a box of rocks with mechanical stuff which is funny because *I* think that I am the dumbest guy on the planet when it comes to engines and such, always have been. The great sage Harry Callahan was known to opine that "a man has *got* to know his limitations."
My dads limitations were legion. For one thing, this was from a time where parents loved to farm their kids out to go work for their friends for free so my dad was always loaning my car to his buddies, having me go mow their %^&* lawn, things like that. Hell Music I didn't even like to mow our own lawn, being on the side of a hill and all. However the old-lady down the street would pay me 15 bucks every time I mowed her 10 sqr foot lawn (what we call a postage-stamp lawn), more for the company I think but I didn't care. Problem was how could I mow the ladies lawn and not our own or my dads buddies? One simple incontrovertible fact: While I was mostly an idiot with engines, my dad was a complete idiot. What this meant was when he wanted me to mow something I would sneak out and turn the idle screw down to almost zero and then call him to help me start it. Now my dad was from a time where dads knew everything and therefore by definition, knew HOW to do everything and every "man" knew his engines. Shrug; it was another time. Point is, there we would be, him wanting me to mow our law, me wanting to mow the old ladies and make 15 bucks, him pretending to be Mr. Engine Fix-It because he had to while trying to effect actual repairs on the "broken" engine. Me, I am sitting there pretending to be stumped about the mower and equally in awe of his prowess with all things mechanical. Straight face too; an acquired skill like any other. In the event, he is out there for hours, replacing first the oil, then the gas, then the spark plug, then the fuel gasket, then...about then I lose interest, he is grateful so he doesn't have to keep standing there faking knowing what to do and we go about our day. He goes off to go bowling, I go out with a screw driver, 3 seconds later and bbbrrrrrrrRRRRRRR! and off I go!
Man I digressed...sorry. What I was trying to say about the music is it looks like you approached it from the standpoint of "I want to learn music" and then "now what to learn?". For me it was a very different path, listened to all the same stuff our generation has and thats important because by the late 80's/early 90's I was listening to hard rock and metal pretty exclusively. Was in Chicago (one claimed "Home of the Blues" and it was a wintery night so my buddy and I ducked into the first bar we found for drinks and for some reason my buddy had this thing for smoking a cigar. Anyhow as it turned out it was Buddy Guys blues club Legends and a great jazz/blues guitarist was playing that night, Dave Specter (tours Europe every winter I think). Well that meant nothing to me; I was just glad first to be warm and second to have a beer. The music started up and within two songs I was blown away. I knew nothing about the blues then but since it was really at the roots of all modern American music from Rock and Roll and Country to Rap and thats the thing that got me Music; as I sat there listening all night, it was like both I had never heard ANY of this music before and yet it all seemed very familiar, just like an old friend you haven't seen in 20 years. I could not figure it out but knew it had me in a way nothing else had. My education started then and one the coolest things about my path was that about 12 years later, I was actually friends with Dave Specter and he was giving me Skype blues guitar lessons, him in Chicago, me in San Francisco working for Sony. It was very cool. Sadly though this is when the LBD started setting in and soon, the guitar work because more of an act of self-torture than therapy that it had been. The music though still soothes the soul for me....
Jeff, I really enjoyed reading all that, it’s the way you tell it, especially the bit about your Dad and the lawnmower, I could just picture it.
You’re right no one ever forced me to play. My Grandma (Dad’s mum who also had the dementia) played the piano by ear, mostly on the black keys oddly enough. My Dad played piano, and my Mum too. When I was a toddler I had a colourful xylophone of one octave, on which I used to play all sorts of little tunes. Then I started the piano aged 5. Then the guitar aged 7 which I have dabbled with all my life but struggle with all the fuzzing around on the frets and sore fingers. I love to hear it played properly, and I do think it is one of the most difficult instruments. Respect to anyone who can play it well.
The next ‘serious’ instrument was the oboe. I wanted to learn the saxophone so I could play jazz, but I was advised that as oboists are rarer I would stand a better chance of getting into university. I did not enjoy playing in the orchestra as I didn’t really fit in with those people for some reason. The oboe does have a beautiful tone, but it stands out like a foghorn which is not what you want when you are early or late coming in after say 54 bars rest. I was a bit if a day dreamer. The oboe is basically a type of shawm though, the technique of which does make it easier if attempting to play various folk or ethnic instruments .
So anyway it was only when I got my first holiday job working in a hotel kitchen that I saved up enough money for a tenor saxophone, so then I could start the jazz lessons that I wanted. There was only a limited time to try and get good at it though before going to university to do music, because then sadly the sax took a back seat. I’m only 5 foot 1 and a bit tall, so I eventually switched to an alto, which I have played more in my adult life. But I do wonder if I’d started sax instead of oboe things might have gone in another direction. Funny how we end up doing things because we are told we should, ‘it will be good for you’, when perhaps we should follow what in is in our heart. I worked in a recording studio in London doing crazy hours before deciding to take up teaching, which is much more civilised and there are nice long holidays off school.
I read on wiki that Dave Specter did not take up the guitar until he was 18 which is surprising considering I thought age 16 was a bit late for starting the sax. It sounds as though you got pretty good at the guitar Jeff. I know what you mean about the blues, I’ve seen some live playing and the style has such huge ‘likeability’ (that awful word they are always using on the ‘X-Factor’) and it is so cool watching good players, and it’s probably the only style where I have ever thought I might be able join in and maybe improvise (on the sax, not piano), which is a tricky thing for somebody who has basically been classically trained. It seems virtually impossible to get the best of both worlds, and it sounds as though your Dad actually got quite got a good balance between the academic side and actually playing the cool fun stuff.
Greetings and cheers for the kind words; had things been different I think I might have enjoyed being a writer but alas, that geek/nerd gene came raging thru and so I ended up an inveterate puzzle solver. Hey there are worse professions to just fall into; I still consider myself beyond extremely lucky. But I am digressing again. Sigh. Nature of the beastie.
I cannot speak to many forms musical learning but one thing I have observed about the bluesmen (and women) throughout their short history is that nobody comes to the blues by way of an instrument or learning said instrument. For the blues, for me and for someone really great like Dave, its the music as a whole that bites down on your soul and never lets go....the music just speaks to me (if so, it must fairly scream at Dave) and after hearing it long enough, if it gets that bite into your heart, you find yourself craving some outlet, almost ANY outlet for the feelings and moods good blues can bring. Some sing, some dance, some see a musical instrument as that outlet...that was my experience and from long conversations with Dave, it was the same thing too. Dave loved the music, could not let it go and so worked in the really great Chicago blues and jazz record stores just to be more involved with the music and the guitar simply became an extension of that.
You brought up Jazz and as a blues lover you would think I would have some affinity for Jazz on some level anyways but no....where blues music is an "obvious" musical form, Jazz is too chaotic for me...maybe British Jazz is better but I swear Music, every single time in my life that I have heard a live jazz band, it seemed like every person in the band was playing a different song, in a different key and to a different tempo. Just too chaotic for my mind and it never ever sounded like coherent music to me. Dave was more than cool with me; at first I was just a fan, then repeated trips to Chicago and he got to know my wife and I got to know his girlfriend of the week but whenever we blew into town Dave would ride us around Chi-town in his SUV, take us to his gigs and we got to be his portable cheering section; once I started getting serious about guitar, Dave sold a few of his own guitars to me that have had a really special place in my home ever since. Sold one back once the LBD got too bad but the rest are here for life (for various values of "life"). But blues can't really be "taught". Sure the chords, progressions and so on, for sure can be taught by any teacher and learned by any student with a modicum of dexterity...but its the heart, the feeling of the blues that can't be taught really, just learned from lots of watching, lots of feeling...it was never about the biggest string-bends or how great your vibrato was. With out heart and feeling those things are just sterile techniques so it was about using just enough bend to wring the heart out of the song for all to enjoy. I am NOT claiming that level of ability; I started playing at 40 or so and the music became a kind of counter-balance with my high-stress day job as an engineer. In fact many of us at the Sony think-tank in San Francisco had guitars in their cubicles and noodled during down-times or during compiles. That was the coolest part of that gig; as a key part of the job, you were paid to sit and think. Exactly HOW you thought was completely up to you and your boss and the boss was always crazier than you were. In any event, "thinking" at Sony could be anything from playing guitar to playing Rock Band on the 60 inch screen in the conference room or playing with the master Lego set in Conference room B or ...you get the idea...foosball, anything that aided the thinking process was encouraged...so yeah, I (and everyone else) got to sit around playing with things and if in a week you came up with something good, mission: accomplished.
Sorry...bad case of "good old days". Worse than forcing people to see your vacation pictures of your trip to Istanbul.
I will make up for it with a link to our site (that lets you play animated GIFs, Christian, hint, hint) with a special animated GIF I made of thin-slicing the Labor Day Tri-tip roast (was making a teriyaki sauce how-to video)...I could look at that GIF all day long...
Hi Jeff. Things are getting busier for me here now that the school holidays are over and the new term has started again, back to work!
Funny to think if you and your buddy hadn’t gone in to the Legends club that night you may never have taken up the guitar, and I guess you certainly wouldn’t have stumbled across such an inspiring teacher. Amazing how some of the most important things in life often happen by accident.
I know what you mean about the crazy jazzers, and the cacophony they can make. I’ve seen one or two gigs where I wished I could have got a refund on my ticket. Generally I have to say that I really admire the intellect that goes into playing jazz, as I really don’t have that sort brain no matter how hard I have tried, it just seems like another world to me. I am by no means an expert on his music, but I have really enjoyed listening to Pat Metheny’s playing in the past, as although he’s a jazzer it’s pretty easy on the ear. When I worked in the recording studio years ago I was always meeting all kinds of people and discovering new music to listen to. Unfortunately that doesn’t happen in one to one piano lessons, so I rely on what I can discover with Google these days.
Interestingly, a number of my teenage pupils are keen to play computer games music on the piano. I have discovered that I can often find the piano scores free online. An example recently was a pupil learning the ‘Mii Channel Music’. I don’t play computer games at all, so I’m seriously floundering in this area. I know you do play computer games, so maybe you could fill me in on the best tunes to learn. Then I can come across as the coolest piano teacher! What really gets me is that there’s no expression in the music, it’s seems really mechanical, but maybe that’s just what I have heard so far. Do you have any recommendations??
Just out of interest, changing the subject for a moment. As I said my Dad is taking the CBD oil now. I just wondered if I give you the link below, which shows you exactly what he is currently taking at the moment, you might be able to advise us possibly:
It says 2 – 4 drops under the tongue twice daily. He’s been having 3 drops each time. Compared to what you are taking, we’ve no idea whether he is on a mega low dose or what. Whether we might expect to notice a change in him on his current dose, or whether he needs to take a higher dose. Can you tell from looking at the link I’ve given you? As you’ll see from the website there are higher concentrations/doses available. I just wondered if you are able to comment at all?.....Music.
PS love the jelly fish! FYI all three links worked on my iPad.
FWIW to reply directly to one important thing: Randy and I post so much here and on our site because when we first got thrown off the end of the dock, there was no one to catch us, no store of information to educate us on this disease, nothing about what WE had to look forward to. I think we independently came to the conclusion to fix that and share what we can, while we can so that the next "generation" if you will of LBD patients don't have to enter this blind.
Hello music55, first I would like to say how sorry I am that you're having to go through this. I know how difficult it can be as both my parents suffered from differing forms of LBD as do I now. Second, I wanted to support everything Christian and Jeff have thrown at you. I know it can be overwhelming and so very intimidating to have so much new information laid in your lap as your father continues to decline from a disease you probably never heard of before your father's diagnosis.
I also wanted to add my perspective to your original question. As a bit of background, I've "known" in my bones for ~3 years that I have LBD, I was given a preliminary diagnosis of unspecified dementia just over 2 years ago and a final probable diagnosis of LBD just over a year ago. I was started on Aricept just after the unspecified dementia diagnosis. As explained to me at the time, the goal was to slow the progression of the cognitive decline and for a month or two I did notice an increase in the quality of my cognitive abilities. But I soon found little to no benefit from taking the drug. I was increased from 10 mg/day to 23 mg/day and again saw some improvement in my cognition. However the nausea and vomiting caused by the increased dosage would not abate and eventually I had to d/c the medication. I had lost any benefit I may have been seeing with the increase in strength of the medication by the time I stopped the 23 mg dosage. My neurologist was very adamant that I continue the Aricept except go back to the 10 mg dosage which I am still on but feel little effect from. There was some talk of adding Namenda to the drug routine but we felt there would be little benefit.
Now to be clear, Aricept, Namenda, rivastigmine (Excelon- brand name here), etc... are drugs approved for use in Alzheimer's Disease and, as far as I know, no other dementias although they are used here in the states fairly often for other forms of dementia. Unfortunately, LBD is a different beast all it's own and those drugs, while often very effective for AD, can be very detrimental in LBD, some even possibly fatal. Therefore, diligent observation by the physician and the patient's caregiver is required. Another class of drugs often prescribed for dementia as anxiety and agitation increase is the neuropsychotics. For most dementias, this is no problem. However, for LBD, these drugs can be lethal and must be used with extreme caution and the older versions of these drugs should not be used unless there is no other choice and the symptoms are far exceeding the possible negative effects of the drugs. I was recently placed on one of these drugs, Seroquel, and have had no adverse consequences to date. It has helped with my sleep patterns to some degree and is easing my anxiety somewhat.
As for some of the mysterious symptoms you are noticing in your father, you should know that LBD is often associated with Parkinson's disease or Parkinsonian actions which could explain many to most of the things you describe your father doing. It is not uncommon, for example, for the patient to begin to hesitate in middle of an action, say sitting. The shuffling steps and loss of balance also fit the Parkinsonian model. A mask like, expressionless face is also often seen in these patients. The mask like appearance of the face makes understanding the patient's true feelings extremely difficult as you have no nonverbal clues to assess. When your father says he is in pain but you don't see the pain on his face he is almost certainly in pain, this mask like effect is most probably why he's not physically expressing it.
OK, I know I've thrown a great deal at you so I'll stop for now. If I may be of any assistance please don't hesitate to contact me.
Randy
Oh, BTW, Jeff's tritip is excellent. If you have the opportunity to make this recipe do not hesitate. You won't be disappointed.
It is very kind of you to share your experience and knowledge of LBD with me. I am so sorry to hear that you lost both of your parents to this disease, that is an awful lot to bear and my heart goes out to you.
It has been overwhelming trying to process what is happening to my Dad. I feel so helpless, when he would always have done anything for me.
It is interesting to compare what you have said about your medication. To be honest I don’t remember us ever thinking that my Dad was benefitting from his medication, and you’re right, its brand name is Excelon. I’m sorry, I should have called it that in the beginning to avoid any confusion. His dose has gone up and down over the last year and a half for no particular reason, and in fact I think he may have stopped it for a while. In the end he came to the conclusion that he would prefer to take the medication just so that he was actually doing something about the LBD, rather than nothing at all.
Thank you for mentioning the neuropsychotics. I’m glad that you have found one suitable for LBD and that you feel it is helping you to some degree. I guess my Dad may also need such a drug at some stage, so this is useful to know.
Thank you also for explaining the Parkinson’s like symptoms. We were aware of these being associated with LBD, and in fact our doctor seemed to have real suspicions that my Dad might actually have Parkinson’s as well. He arranged for my Dad to see a consultant who assessed him thoroughly and seemed quite certain that he did not have Parkinson’s much to our relief!
I really appreciate all of your knowledge and support. Having read some of your other posts, I think you have a very eloquent and sensitive way of putting the emotional side of all this into words. This is of great comfort, as I think many people would find it difficult to express how all of this makes them feel. So thank you for sharing the emotional side as well, which is something I can truly relate to, and I’m sure others do too.
I don't wish to beat a dead horse so to speak but I wanted to be clear concerning the Parkinson's like symptoms. As you seem to have researched this horrible condition quite well, I'm probably telling you things you already know. If so, I apologize for the repetition.
There are two major variances of Dementia With Lewy Body. In the first, Lewy Body Dementia, the patient develops dementia about a year or so before the onset of Parkinson's like symptoms. In the second, Parkinson's Disease Dementia, the patient develops true Parkinson's Disease and at a later point develops the dementia. Stated another way, the LBD patient can exhibit any or all of the PD symptoms and technically not "have" PD. Jeff and I both exhibit many symptoms related to PD. PD and LBD affect the same areas of the brain and often have symptoms that mimic each other. Actually, LBD is often misdiagnosed as PD. At least here in the states, that's a product of the lack of knowledge about LBD. My wife and I have actually had to educate some physicians concerning LBD. It is not well known or understood. Nor, as many physicians will incorrectly state, is it a variant of Alzheimer's. Each is caused by differing entities.
If the Parkinson's like symptoms interfere with the quality of the patient's life or effect ADL's significantly, Parkinson's medications are often prescribed. I was offered that choice but decided the symptoms weren't worse than the drugs.
Again, I apologize if I'm giving you information you're already familiar with. I just wanted to clarify my comments.
Not at all, please never apologise for giving information😊 . The relationship between LBD and PD seems complex, but your explanation of the two ‘scenarios’ is very clear, and I certainly did not know about all of that.
My Dad has had the PD symptoms for quite a long time. I remember a family holiday in the summer of 2017 when he was shuffling about in the holiday cottage, and standing in doorways getting in the way. His eating was quite slow then as well. Now days, his eating is incredibly slow. Mum spends a long time sitting at the dinner table with him when she has so much else to be getting on with. (I read your post ‘It’s not easy being a houseplant’, and I just thought to myself, ‘that’s my parents in a nutshell’. I’m sure many others who read it could identify very strongly with what you said as well).
Having a conversation is difficult for my Dad now as he struggles to find words and string a sentence together. On the one hand, we always try to include him, and on the other we don’t want him to feel under pressure to speak as what he says is usually quite fragmented.
As I said before, he is quite unsteady on his feet and has had a few falls. In fact he had another one yesterday while my Mum was out walking the dog. He was in the garden and fell on the patio and banged his head. He is bald, so it came up with quite a bump and a significant wound. It is getting to the stage where Mum is uncomfortable about leaving him on his own for too long. If she goes out, he often rings her to see where she is, he can never remember where she has gone. Actually, one thing that has proven very useful is that they now have a whiteboard, so when she goes out she writes on it where she has gone, and he knows to look there.
Another of the PD like symptoms is that his handwriting has become VERY small. It is such a complicated condition. We just try to help by being as cheerful and positive as we can. Luckily my Mum has a very good sense of humour which often helps to lighten tricky situations and it brings a smile to his face. In fact he still has a very ready smile despite everything
Hey, yes, this is an incredibly complicated disease of which so little is known.
I can see your father in both my parents, Jeff, and myself. It is so common to come to a point and just freeze, not knowing what to do next, as you describe your father doing in the doorway. My parents became slower and slower in eating, eventually my mother became anorexic, refusing to eat anything. Jeff and I have both seen a drastic decrease in our appetites and, as a result, are having difficulty maintaining weight. My neurologist and gastroenterologist have both stated they want me to stay around 200 lbs. as they are afraid I will obtain an infection, say pneumonia, and not have the physical reserves to fight it. Pneumonia, BTW, is one of the more common things that takes the LBD patient in the end. I’ve had to start an appetite stimulant in order to come close to maintaining this weight. Oh, as a frame of reference, I’m 6’1” therefore they’re hoping to keep my BMI to ~ 25-26. If you live in an area where medical marijuana is legal it seems to be much easier to maintain weight as it causes a huge increase in appetite. Although Jeff is still having a whale of a time maintaining his weight.
You are so correct that it difficult to decide how to include the LBD patient in your conversations. On the one hand you don’t want to exclude them but on the other you don’t want to cause excess stress. No matter how withdrawn they/we seem to be withdrawn within themselves, I truly believe, somewhere deep inside, that they still comprehend ans appreciate what is being said around them. Therein lies the next great balancing challenge: including them so they realize you still care and understand they still have a need to be included and understanding you need to be careful what and where you discuss your father’s condition. Again, even if they’re totally withdrawn, they most likely hear and understand a great deal of what you’re saying. And as their paranoia and distrust increases, even the most innocent of conversations can convince them you or others are out to get them or that their demise is imminent. If my mother overheard even a portion of a conversation, whether about her or not, she soon became convinced her caretakers were trying to harm her, or that someone was stealing from her, etc... One of the biggest reasons, other than personal experience, I believe they still understand even when mentally visiting another universe comes from my father. He could be completely out of reality, barely responding to any questions/stimuli and yet would suddenly respond correctly concerning something vague we were talking about and be absolutely correct in his responses only to then go back to wherever he had been, almost unresponsive again.
The small hand writing, micrographia, is another of the classic Parkinson’s like symptoms. I am developing it quite rapidly, especially with my signature. Other than OT, as far as I know, there is little that can be done for the condition. Although writing guides/handwriting templates are relatively easy to find to help guide their writing skills, see rehabmart.com/category/writ... for examples.
And I too am beginning to worry when my wife is gone to long. Could be minutes, could be hours. She has gotten so she refuses to leave me alone. Because of the “separation anxiety “ as well as how rapidly I can slip into the houseplant state, and usually without much to any forewarning. This really pisses me off that my alone time has been so severely limited, I understand the rationale, love and care behind that decision but it doesn’t lessen my distaste for it.
I haven’t slept, sleep disorders are another classic symptom of this disease, since yesterday morning and am beginning to feel as though I am rambling and my descriptions becoming more and more disjointed therefore I think I will stop while I’m ahead. Although I am quite sorry for the situation you find yourself in, I am glad to have met someone else who somewhat understands, to converse with about this horrible disease.
Hey Randy, really quick I read something in your post and need to respond quick before its gone (that kinda day) so I will get right to the point: The thing with the periods with the caregiver gone, something we stumbled on that actually helps is to set up location sharing if you and your caregiver has Android phones. We did it and now whenever she is gone for what seems to me to be too long and I start to get concerned I can pop open Google Maps and there she is, at the store, the bead shop, on her way home, sometimes just minutes-away. I know it sounds dumb but its really re-assuring on some level; it helps me anyways.
On the conversation thing, just a fruit-cake thought I had.....OK its like we have people talking to us, asking us about conversing with the demented and while we are trying to be helpful by advising not to say this or go that path, I think we should sit down with a pen, paper and a big fat doobie and make a list of the kinds of things that we WOULD like to have people include us in conversations about, things that we think we might be able to engage in, be part of the conversation and therefore party. Think about it; I will. Rough morning today after first day of study.....meh.
Jeff, some time ago, when I first started getting lost while walking, we added Life 360 to our phones. It’s an app much like you describe, allows us to see where each individual is coming from and going to. Works great as long as I’m “up” enough to understand how
You make a good point. Jeff scratches head. What if there was a way to set things up to somehow auto-ping you when the other person is outside some range. Nothing obnoxious but if your in fog, phone vibrates or something, you look at it with a bleary eye and see a notification about the alert. You touch and you are looking at her location.
Oh yeah Randy et al about the eating thing. I don't make a big deal of it but two key things about my lack of ability to keep weight on:
A. As luck/coincidence would have it, Randy and I both had gastric bypass surgery a ways back. This particular surgery pretty much kills your appetite so its a mental discipline thing to not just keep fed but to keep fed with nutritionally balanced food. Now, with the brain damage, that mental discipline is gone and so we have no urge to eat, nor does it occur to us to eat.
B. In my case, even with appetite stimulants, my problem is I smell and taste phantom smells and tastes from the very beginning and when you make a meal and get a heavy scent of dog crap or burning rubber off of it, I just sip water and try again later.
What you said about your father appearing to be miles away (or even asleep in my Dad’s case), then suddenly making an out of the blue highly relevant contribution to a conversation is true of my Dad too. Other times of course he IS asleep and he sleeps A LOT. Sometimes we worry that he is sleeping his life away, hence the initial concern about Exelon sedating him.
One interesting thing that my Mum told me about visiting Grandma (my Dad’s Mum) who had dementia (we’ve never knew what kind it was). My parents took a photo album with them to show her. Although she seemed unresponsive, my Mum did a very good job of keeping a lively monologue going while showing her the pictures (still unresponsive). When it came to time for my parents to leave her, she clutched the photo album to her chest and WOULD NOT let it go, proving that behind the blank response there was a lot going on inside. As you say Randy, it so important for caretakers to be very cautious about what they say near somebody with dementia, also to realise that they are still ‘in there’, hearing, seeing and feeling things in response to what is going on around them. I think, sometimes people don’t always visit their loved ones as much as they should when they are taken into care homes on the assumption that ‘they don’t know who I am anyway’. How wrong they can be. It is very sad.
Dad had two sisters who both died of cancer, but he always thought that he would get the dementia. Looking back with hindsight there were little signs. But there was one time, when just out the blue he announced that he did not want to drive anymore. We all thought ‘what?’, ‘why?’. He’d had a few prangs, but nothing alarming, but inside he must have had a feeling that he was not safe to drive. It was quite a surprise and of course this put added pressure on my Mum.
We think it strange that Dad has never talked to us about having the dementia, even in the early stages when it would have been easier for him to. I just remember a couple of occasions when he said to me ‘I think I am losing my mind’. And there was a time on a family holiday in the countryside when we were on our own, and I was walking a little ahead of him, and he called me back, held and squeezed my hand and said my name. That was a few years ago now, (but there were little signs even then) and I have always had a feeling that he KNEW then, and that he was consciously cherishing a moment.
As you say Randy, it means so much to have others to talk to who understand.
Its funny how, more and more, your description of your father's illness reminds me of the course of my father's disease progression. I suppose it's only natural that I remember my mother's progression more vividly than my father's, afterall, my father has been gone just over 16 years whereas my mother has been gone just over 3 years.
For example, my father began sleeping more and more as his illness progressed. It wasn't due to medication, I don't believe, because the only dementia medication I remember him taking is Aricept. I'm not even certain Namenda or Exelon were available prior to his passing. It's likely I had forgotten this due to the course of most nights. A short time after retiring to bed, Dad would start a soft crying which quickly advanced to a loud moan and outright crying/wailing. Throughout the night he would be visited by relatives long deceased. Shortly after he realized they weren't physically in the room with him he would become concerned as to where they had disappeared to. When PT/OT/etc...wanted to make an appointment to come to the home to see my father I often stated they could arrive at their convenience as we were open 24-7. Of course I was joking but, while living through it, that hyperbolic statement felt quite real. His night terrors, as we called them, began in earnest immediately after emergency surgery to attend to a bowel blockage.
Speaking of the bowel blockage, this is something to be very aware of. It seems to be a common complaint in the LBD community, especially in the middle to late stages. My father was plagued by constipation throughout the course of his disease but became severely impacted quite quickly toward the end of the middle stage of the PDD. This led an emergency ambulance ride from our rural community hospital to a Level 1 center in our closest major city and emergency surgery on New Year's Eve. The result was a colostomy which was retained until his death. The doctor's said it was possible to reverse the colostomy but he never regained the strength to undergo elective major surgery.
Your grandmother's actions concerning the photo album only serves to further reinforce my belief that the patient is "still in there". Although she had shown no signs of emotion during the time your mother was viewing the albums with her, the fact she held on to the albums when your mother was about to leave speaks volumes to the fact she was very involved.
As I alluded to above, general anesthesia is another thing to be very wary of and allow only as a last resort. I saw the worsening of the dementia symptoms following general anesthesia in both my parents as well as my brother who suffered from vascular dementia. And, at least in the 3 cases I was intimately involved with, the detrimental effects were permanent. Personally, I have undergone "twilight sleep" or "conscious sedation" since my diagnosis without consequence. It seems the "general" is the bugger to be concerned with.
I do not believe it to be uncommon for the patient to be hesitant to discuss their feelings and understanding of the ongoing dementia. Neither of my parents ever really discussed anything about their conditions even though we often encouraged it. Jeff and I, on the other hand, will speak to anyone about almost any aspect of what we are going through. That is, as long as the inquiring person has a genuine interest in learning and is capable of understanding (wanting to understand) what we are trying to relay. If not, it simply not worth the limited mental energy spent trying to explain everything to someone who might have only inquired out of a sense of politeness or passing curiosity.
It feels like I am only passing along unpleasant information in my writings to you and for that I am sorry but all is not doom and gloom. There were times when my parents were very expressive concerning their family, when they would slip back into their old personalities for a fleeting time. That, to me, is one of the blessings of LBD, the cyclical nature of mental clarity. If you're interested, I will continue to relay my memories of their disease course, as well as mine, as they occur to me. Especially the better ones.
Firstly can I say how sorry I am that you have also lost your brother to dementia as well. I did read that in another of your posts, and I cannot imagine what you must have and still be going through. It is so very sad. In answer to the end of your last message, of course I am very interested to know about how the disease affected your parents, and brother (who had a different kind of dementia I realise), but please only relay your memories if you are comfortable doing so. I certainly wouldn’t want you to be stirring up painful feelings and emotions unnecessarily.
As you know, my Dad has very bad aphasia, and I know that you and Jeff suffer from it too. Yet both of you are able to write down your thoughts freely when you are feeling up to it. You have an outlet for expressing yourselves on this forum which makes you both seem very normal to me, as I have never met either of you in person and seen the physical difficulties that you have to cope with. On the other hand, in my Dad, I am only seeing his physical difficulties, and apart from the few words that he is able to utter, there is no further insight into how he feels and what he is thinking. It’s a shame that he would never be inclined to write things down the way you do, as I’d love to have more insight into how he is feeling and thinking. So what you are able to tell me about the condition helps me very much.
When we do speak, and I ask him something, he will always tend to answer using some of the words from what I have said, rather than coming up with a reply completely of his own. Which of course he can be forgiven for, as it saves searching for words and still gets the message across.
I think my Dad is perhaps physically more tired in body and spirit than you and Jeff due to his age, and I guess his cognition is tired too. I think the dementia has been slowly creeping up on him over a number of years.
Other symptoms that he displays are the loss of his sense of smell, and a change in his taste, now for sweeter things. He eats much smaller portions, using a spoon, and has lost a lot of weight, but not dangerously so. His feet are a bit swollen, probably from all the sitting around, and he always has VERY watery eyes which must be really annoying for him. And he falls about a lot.
Thankfully, sleep is not a problem at the moment. In his own words he ‘sleeps like a log’ and there have been no hallucinations. Nor has he expressed any distrust or negative suspicions of those around him.
As I said, he walks with pigeon steps and his head down. My Mum is always telling him ‘chin up, look at the horizon’ as they walk the dog together, at a very slow pace.
I suppose he just seems as if he is quietly fading, more so recently, and Mum is now afraid to leave him on his own in case he falls.
We were all thinking of going out to a country show this weekend, but it doesn’t look as though he is up to doing things like that anymore. It is a horrible feeling when things that we did, say a year ago, we now realise that this year he can no longer do. It is very saddening as the list continues to grow of things that we will never be able to do as a family again. As you say it is hard to look on the bright side, but of course there are still very special moments now and again that we must all hold onto and cherish always. I feel very comfortable sharing my Dad’s experience of LBD with you, and your kind and sympathetic messages are very much appreciated.
You are correct in thinking it is easier for Jeff and I to put our thoughts to paper, so to speak. For my part, I have never been much of a conversationalist and now I'm almost mute. But I've always been a very descriptive, emotional writer and, as I wanted a way to let my family understand how I was progressing, writing just became the natural outlet. It has become a running diary almost that anyone in my family can go back and review how I've changed, how rapidly I've changed, and, more importantly, things I've felt for and about them as the monster who walks beside me quietly creeps ever deeper into my soul. Most, I know I can, can see a continual decline in my writing abilities over the past couple of years. The sentences are becoming much more disjointed, the descriptions are becoming more vague, non descriptive and uninteresting. And, perhaps worst of all, a writing that took me maybe 20 minutes to complete last year, will now take the better part of a day and still not convey the same information as it would have a year ago. For example, I have been working on this response to you since I received your last response yesterday. And, if I dare speak for Jeff, he is in much the same boat. As a software engineer, he has been expected to maintain a high level of communication skills through writing, both technical and personal. Therefore, as the aphasia advanced, it just naturally became the obvious outlet to release his feelings and musings.
I can well understand your father's repetition in his answers to your questions. When in a deep fog, I almost certainly will not be able to answer anything in complete sentences. Most often, I will answer in short one or two word responses and only if prompted. I make little to no attempt at social interaction during these times. Although I am told I am quite docile and compliant at such times. Sometimes it's just easier and clearer to repeat the question as my response.
You brought up a point that Jeff and I have been discussing for some time, the thirst of the "normal"/caregiver for knowledge and understanding of what patients are going through. We have been mulling over the idea of writing an eBook that would include the things we think we would have wanted to know as caregivers and the SO of a dementia patient as well as things we want you to know from our current perspective. A Use and Care Manual, as it were. Thing is, this would be an aggressive undertaking for two nuts with little mental energy between them to pull off. We think we might just have in us yet but the jury is still out as we investigate the process.
Thank you for your concern of my feelings when writing about my parents and brother, but don't be alarmed. I have found the writing and sharing to be cathartic in many ways. It helps me keep their memory alive and, I hope, helps others out there understand the actions and complaints of the patient just a bit more as they become more and more overwhelmed as their LO's dementia progresses.
We used to remind my mother constantly to walk upright, with her head up, looking forward. It was a total waste of time and now I see first hand why. When I'm reminded of such things I will almost invariably forget what I was just reminded of before I can do what you were wanting me to do. It's not that we're being stubborn or difficult, we just simply are not capable of retaining the information for the most part.
And I totally understand your father's hesitance to go to the country show this weekend. Jeff and I both can not tolerate noisy, crowded, disorganized situations. You may have read my recent post concerning not attending the Jimmy Buffett concert with my son this year for the first time in many years. And we rarely eat out anymore, just can't stand the noise and confusion of the restaurant. And that's why neither of us travel any longer unless absolutely necessary. My trip to visit him this past spring was a major accomplishment which required an inordinate amount of planning to pull off. We had to make sure our flights were non stop, either early in the morning or during some other less busy portion of the traveling day. We coordinated with the airlines concerning my need for extra time boarding and debarking. We spent a good deal of time finding a hotel that had little to no night life, and in Las Vegas that's a true challenge. There were a million little details that had to be considered before our departure if we wanted any chance at success. And although the trip turned into a great success, I am almost certain it will be my last big adventure barring an emergency.
So, I have again thrown a great deal at you and I am tiring quickly. Therefore I shall close with those few words!
Randy, something you said reminded me of something speech-wise I have noticed, a pattern in my attempts to express non-trivial thought. In any situation where I derive a solution from a variety of sometimes disparate facts and data-points, I can't seem to express that to another human being, and for sure not through dynamic speech. So what ends up happened is conceptually like this:
A. I figure out some answer based on some non-obvious data.
B. I go to explain my answer and I cannot. I can see the data in my head, the answer or derived solution seems obvious based on that data yet I cannot explain my thought path to support my conclusion....so what I end up doing, almost by reflex is to just dump ALL the data out there, with the hopes the listener will hear all the facts, sift out the salient ones and arrive at the same obvious conclusion I did. That is my only hope of conveying any non-trivial ideas anymore; I have no control over this most times. Just dump it all out there and pray the listener figures it out too.
Woof.
EDIT: Needed to add something important. This is the only way I can express anything more complex that how to microwave a can of soup. The problem is with this, the listener must know me, the better the better and understand whats afoot AND have the patience to stick in out. This means maybe one case in ten can I get the right idea across. The rest of the time I go through this and in the end the listener is no closer to the truth than when I started. This happens enough and I lose heart going through all that effort to explain what could be simple. When enough people miss the point and the pain/effort of doing this becomes too great, I start to give up and quit explaining anything more complex than you might find on a Saturday morning cartoon show. This sucks but its the truth; if anything will make me stick to idiot-level phrasing, this will be it and I can see where people will think me an idiot when its simply too much effort to disabuse them of that notion...
To paraphase the sage Forrest Gump, "Stupid appears as Stupid is." OK maybe if Forrest dropped some acid in his breakfast cereal but you get the idea: you look and sound like an idiot, you get treated as one, and when that goes on long enough, you become one in fact as well as thought and deed.
I think your writing is brilliant, regardless of how it may have been in the past and I would certainly never describe it as disjointed or uninteresting. On the contrary, I think it is cleverly constructed and easy to follow, and thanks to your openness I have learned loads.
It is invaluable for your family to be able to read your writings, especially at this time. I fully appreciate your comment that writing a reply on this forum can take time. You must conserve your energies for communicating with your family, and also with Jeff as well. It’s fortunate that you have each other, in that there is probably no substitute for being able to confide with another person who is also experiencing the same condition.
The eBook you mentioned would certainly be a unique resource for both people with the condition and their carers, although I can see that it would be quite an undertaking.
By the way, I had already read your post about not going to the Jimmy Buffett concert with your son. It reminded me of the things that we are no longer able to do with my Dad, such as the outdoor show I mentioned. We feel concerned as we have a family holiday booked in a couple of months which is a four hour drive away. It is my Dad’s third visit to the same cottage by the sea, as in previous years. The pace will be very relaxed, but we are worried about how he will adjust to his surroundings (which are familiar), and want to ensure that he is comfortable and mentally supported as much as possible. Any thoughts you may have as to how we can help him would be very welcome.
It won’t be quite as adventurous as your trip to see Jeff though. That sounds quite an accomplishment, but worth every moment while you were there I’m sure. I mean, you got to taste Jeff’s TriTip! We must try his recipe here, but the summer is almost over so time is running out.
So anyway, I understand what you said about is taking a long time to write a reply, and there is no rush whatsoever, anytime. It is nice to have a friendly ear with whom to compare notes.
By some happenstance, I had missed several of yours and Jeff's posts over the past week or so. So I wanted to get in as well. Demented people are shamelessly self involved don't ya know. Fair warning, I may jump from subject to subject seemingly randomly. It's just that type morning.
On the clock pulse thing, I wanted to add one of the misadventures from my testing that I can remember. It came during the portion of the test where the doc shows you a picture and times how long it takes to name the object in the picture. Of course I did poorly on this but it wasn't entirely because I didn't recognize the object. Nope, often it was right on the tip of my tongue. For example, he showed me a picture of an elephant. I knew what it was, could feel the word trying to come out of my mouth but it just wouldn't. Before I could finally get the word "elephant" out, time was up. Finally, out of frustration, I said we should just call it a pachyderm and move on. Funny how a parallel and correct answer, but wrong, can pop out when frustrated about getting the correct word out. That elicited a chuckle from the neuropsychologist but it did not earn a checkmark as a correct answer. I think this further illustrates Jeff's point with the clock pulse.
I've been giving your upcoming trip with your father some thought. As the place you are heading to is somewhat familiar to him and quiet, I don't believe you will see a great deal of difference. My worry is the four hour car ride to and from your destination. If your father is like me, his sense of time is totally screwed. Four hours in a car, to me, could seem to be four minutes or four days, now rhyme or reason. If it begins to feel like the four hour period, I will become very anxious and the fog starts rolling in. This was my fear during the flight to Vegas, ~four hours as well. To compensate, I loaded a ton of my favorite music on my phone and, as soon as my butt was in the seat, I placed my wireless headphones on my head and lived in that world for the next four hours. With dementia it isn't difficult to visit and live in another world for a time. At any rate, the soothing music, read soothed me not that the music was sedate, provided just the distraction to keep me from falling off the end of my limited pier. With some planning, and possibly several stops along the way, I think you can lessen the likelihood of your father having difficulties.
The links to differing dementia videos Jeff has been giving you are excellent sources of information. I just wanted to add one more which I have found invaluable. That source is Teepa Snow. She is an OT who has devoted the majority of her career to the treatment and care of demntia patients. She has many extremely informative videos on YouTube. She also established PAC.com (I forget what that stands for, "Positive Approach to Care" or some such) which is devoted to education concerning dementia aimed both at the patient and caregiver. She now tours and gives lectures on the treatment and care of dementia patients. She lectures internationally so there is a chance she may be coming to a town near you! She has a wonderfully engaging lecture style and a wealth of real world examples which she sprinkles freely into the lecture. I participated in a video forum for dementia patients just yesterday, very informative. There is also a book on dementia and care giving called, "The 36 Hour Day", by Nancy Mace that helped me immensely when I was a caregiver.
Sorry, I thought I posted this several days ago, guess not! Anyway, hope this helps in some way.
Yes, from what you and Jeff have described, those word and picture tests you have been given sound so frustrating. It’s a horrible feeling for anyone trying to think of a word or name of something that just won’t come to mind, but to have that feeling over and over repeatedly during those tests must be rotten, although as you say you came up with an impressively intellectual and parallel answer, just not the one they wanted! Ho hum.
Thank you for your comments about taking my Dad on holiday, and how we could help him deal with the car journey. It’s interesting, what both you and Jeff have said about lapses of time. I’m not sure whether my Dad experiences this, as he has never mentioned it or seemed confused in that way, but then he doesn’t say very much either so it’s hard to tell...hmm.
I have spent quite a long time watching the You Tube videos that you mentioned of Teepa Snow. She is an excellent speaker, very easy to follow and as you say really engaging to listen to. I thought it was interesting when she said that for around every ten people that are told they have dementia, only about two of those will receive an accurate diagnosis of what type or types of dementia they actually have. I think this is true of my Dad. On one occasion he was told he had Alzheimer’s, and on another he was told it was LBD. I did not realise that both conditions are caused by protein deposits on the brain, so could they look similar on a brain scan? It is all rather confusing, but my Dad most definitely has the Parkinson’s symptoms associated with LBD without a doubt. It is a bit of a mystery.
I’m not sure that my Dad has really had the best experience with his doctors. Early on when he was struggling with dizziness brought about by the medication he was told, ‘Well, you’re 81, you’d expect to be dizzy at your age’. They didn’t really seem to be listening to him at all. On the day he was diagnosed, my parents were sent into the next room to receive the ‘Alzheimer’s pack’. My Mum said it felt as if he was joining a club or something. My parents were so overwhelmed at the time, trying to take it all in. I have the impression that it was not dealt with very well or in a very sensitive manner at all.
As Teepa Snow said, to the medical practitioners it is not so important to know what the exact type of dementia a patient is suffering from, but to the carer it is crucial to know as the symptoms can be so different. The carer needs to know what to expect as the disease progresses, how to respond to the behaviours of their loved one, and how best to help and support them. It can all be very confusing.
By the way, thank you also for the book reference ’The 36 Hour Day’. I did find this on Amazon and will certainly look into it. Thanks to the resources that you and Jeff have very kindly offered me, and also the experiences that you both are continuing to share on this forum, I have been learning such a lot. I am gently imparting some of this to my Mum too, and hopefully between us we will be better equipped to look after my Dad through all of this.
Thank you so much for the recent information Randy, it is all very much appreciated.
Hey; I have no idea how old this is but wanted to reply to something you said about your dad. You wondered why when your dad was first getting the dementia he didn't talk about it. Music...the road from where you start (according to everybody, you are fine, work starts to get a little tougher than usual) to where he ends up (today) is a rough, tough, mine-filled path to take. At the moment your conscious mind starts to recognize something just might be wrong with your reality (as you see it), your subconscious already has a good clue something more fundamental is amiss. Now heres the thing: here you are, bread-winner maybe, sole-bread-winner possibly and so before saying anything substantive to anyone, including admitting things to your own self, you talk yourself into believing that its only ...being responsible if you made damned sure something was wrong before setting off warning bells, which you also know on both sides of your brain that it will end your working life and you DON'T have a fix for that and too many people are counting on you so....just let a little more evidence pile up, you will do the right thing when you need to (translated: can no longer deny reality, which usually happens right after your employer decides the same thing).
Music, I think a lot of things would have to be luck in that persons life for them to be able to really talk about it before it is literally too late to really talk about it. In a lot of ways I was lucky but the ways an average person needs to be in order to talk about it ahead of time would probably include them being able to first "confess" or admit to themselves that there is a problem and (here is the important bit) that the weight of the potential problem outweighs any personal discomfort at talking about it. Thats part family history and things and part the person being confident in themselves, a strange thing to say about someone who is worried about possible dementia, particularly the "old wives tales" wisdom about dementia passed around by *their* parents. This is another way I am personally luck; 20 years ago and I would be in Robin Williams shoes; 20 before that I would be in my grandmothers shoes (died of AD although now I wonder if it wasn' LBD, this was 1970 or so). So now I have it but enough is known about it that it CAN be talked about without as much social stigma.
One more thing; one more gotcha. if you are the bread-winner, the household looks to you for guidance, wisdom. And if you ARE considering the possibility of dementia-related disease you not only must accept the probable loss of your profession (loss of income, not the pride part) you must also by definition accept the probably need for NEW income for medical needs. And you don't have an answer for that one and thats also a tough one to say out loud to your family.
From the instant a person starts to suspect something is wrong to the instant they can no longer deny something major like AD, PD, etc, you may not see alot but there is a whole lot going on behind their eyes and the worst part, the part I would tell my younger self if I could was, unlike everything else I have done, I didn't have to do this alone and in fact to get used to it because you will be needing people for a long time to come.
Jeff, please excuse my delayed response. It’s term time again and quality time is a bit scarce.
I want to thank you for what you said above, it was very kindly explained. It makes me feel sad that my Dad was probably having many of those thoughts, as you say, long before any of us first noticed those early little signs, which now looking back all piece together to form his current situation.
I think I mentioned somewhere that my Dad had two sisters who both died of cancer, but my Mum says that my Dad always believed that he would end up ‘inheriting’ the dementia that my Grandma suffered from, and he has. It is making me wonder if I’ll be next in line...I guess as he was half expecting it he could have noticed those early signs a long time ago, as you say behind those eyes there could be a lot going on. Especially as my Dad is a real deep thinker and ponderer. It’s hard...he often sits with his face down in his hand – I don’t know what he is thinking...maybe he is not thinking. There are so many questions that I would like to ask him about what is happening to him, but it just doesn’t feel right to ask anything much, so I don’t.
Thank you for your comments though, you said a lot of things that were gently put and it has made me think about how my Dad has been experiencing all of this internally, rather than just our external observations of him...so thank you.
BTW, please excuse any delays in my replies, work and preparing for work takes up quite a lot of time now, and I need quality chunks of time to give proper thought to all this. My contact with you and Randy is invaluable and you have been helping me so much to understand better. Music.
Music...dragging myself thru this day, had intense and long session at the study yesterday. As is the case when I over-use myself for too long, I pay for it mentally the next day, just feels like I had one pint too many last night......one pint too many of a particularly dodgy IPA...ugh.
But I for some reason there is something in my gut nagging me to be clear about a couple things in your response, so I am writing. I will probably figure out why tomorrow. For now however these are things for you to know CFB (clear as a...bell):
* OK I know this isn't heavy like the rest probably but had to state the probably obvious from your comments and say cool, you are an educator! I think that is the best thing ever and while I have done lots of jobs in my life, teaching has and always will be maybe *my* best thing ever. Aside from engineering, teaching is the only job I would do for free. Only taught a year or so; local college contacted our software firm for pros that could teach the in-use languages and tools of the day (yadda yadda). My boss took teaching the C Language track and I got the Advanced C++ class. Had to write all of my own class notes, material, selected all books and so on, Very cool. In any case, I definitely understand how overworked teachers are...
* OK funs over I guess. My brain is pretty scrambly today so will just spit this out. These are all important and interconnected things. How and why are "later" things.
1. There is a saying that dementias are like snow-flakes, no two exactly the same which is a pretty fundamental truth because regardless of cause, the exact, precise damage is almost random in nature, no different than in you shot a shot-gun with "protein" pellets at a brain. Skipping the obvious blast entertainment, where each pellet hits is random meaning the brain center damaged is random as well.
2. I am no paragon of virtue. I have not always been an up-standing citizen. However for something like this I will tell you truth. Truth as I know it. I have no way of proving I am sharing nothing but truth but I am. Its an engineer thing.
3. My truth or damage may or may line up with others at my same stage or be wildly different.
4. That said Music, because the regions of the brain are pretty geographically generalized (this phrase makes sense to a diseased mind) damage tends to be inflicted in predictable areas like memory loss, delusion, etc. Thats why I do it, because even though my damage (exact damage from proteins), there is enough similarity that I can maybe share this stuff and the next one reading it, be they patient or caregiver, might not feel so alone. That loneliness is the worst in the beginning, a mental self-imposed isolation....
So the takeaway I hope is I am doing my best, my intentions are good and if this helps anyone great but know I fear every time I write that stuff that someone will take it like some kind of gospel and go off and make some dumb decisions. Folks in this boat already have enough problems what with the holes causing the sinking and all....they don't want to throw out the oar as well, regardless of the chances.
Hey there, Happy Saturday. Just wanted to throw something maybe only tangentally related BUT a most curious thing will be afoot for moi come Monday morning (like two days from now). I will actually be participating in a drug study here in Las Vegas at the Lou Ruvo Brain Center. Its a big/interesting deal for me for two reasons:
1. They are the first and so only study I have seen so far that has no problem with cannabis use. That by itself is pretty amazing BUT...
2. After conversing with the head nurse or doctor in charge of this (and we were speaking very frankly) it became obvious that the whole point of their drug trial was to even out the cognitive cycles in LBD patients, giving them a more even, sustained level of cognitive ability throughout the day. Bully for them but guess what? That is exactly, precisely the effect I expect out of my 18:1 RSO project, aka Operation: Constant Clarity (yes I am ex-military). The wild thing to me is, the 18:1 oil I came up with fixes things in such a way that my project is almost an assured success at least on some level. I already know RSO lasts all day and I know the 18:1 oil clears my head for a while, so...if I make RSO out of the source of the 18:1 oil (special strain I have going in back called CB Diesel, 20:1 CBD:THC ratio)....anyhow once we were really clear on what I was trying to acheive and the way I was going about achieving it, it was too close to what their "mystery" drug is trying to do and they have asked me to halt my RSO project until after this thing is over.
So here are a few interesting take-aways:
1. I know the 18:1 works but more importantly, I know what it feels like when its working. That feeling is the hardest thing I have to describe to doctors but its not high or buzzed or anything like that. Thus if their "mystery" drug is pushing the same buttons so to speak I bet I can tell.
2. I am already working on the head nurse or doctor to get more specifics on the biomechanics they expect to see; I have a pretty good clue how mine works and so will be looking at that to not just check for overlap but check my thinking as well. Remember I know nothing about medicine, a bit about medical research and a lot about general engineering. So its "checking my math", to coin a phrase. My money says they found a way to get past the blood-brain barrier and so they are fidding with the dopamine levels, probably trying to jack them to 15 in the brain. Just a guess, have my first "session" with them on Monday.
3. If I can squeeze the actual name of the drug out of them I will post it here for any curious folks.
And thanks to Randy for the kind words on my cooking (well, of TriTip; the less said about my veal parmigiana the better. I think I made it for Beth sometime in 1994 and she is still chewing on it today). I really hate how little this makes me feel but making that and a few other things I have felt pride in the end-product....and.....actually Music this may or may not help with Pop but....Randy, pipe in on this one.....I really hate it when well-meaning folks try to make a big deal out of me accomplishing something a 5 year old might struggle with, in fact to be crude and blunt its the same tone of "attaboy" you might give your just-potty trained child when they do it right the first time. I get the feeling people think this helps me not feel so bad about losing everything else, when what they don't get is the thing they are congratulating you on is gone too.
In short, if you feel the urge to compliment Dad on his ability to walk to the kitchen for something or other menial task, stop once and think twice. I hear those congratulatory tones for such stupid things and inside I cry over the idea "is this all thats left of me? Is this the best I have to offer now?"
I am not saying don't be positive, just recall that while the act or task might be hard for a child, do NOT use that voice or you are treating him as a child and if he is at all like me...I want to break something. Congrats on life-skills, no. Congrats on the fight he is having with say memory (hey, great job recalling <such and such> when he recalls something important like the stove or other mail or...I don't know what would fit in your environment.....I guess I would draw the line like this:
If you want to reward or congratulate him on something ask yourself:
A. Would I reward a child for similar behavior?
B. Is task anything you would consider having a child doing?
If the answer to either is YES, skip it and find something else. Show him a card trick, I don't know but don't congratulate him on the smooth job he did wiping his ass last time he went to the loo. Personally I would much rather hear one "real" compliment a week over something real that I did vs having 10 per day for such nonsense as being alert enough to answer the door when the post came.
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Discreet thought: he may appear to be simple and/or brain dead on the outside but I have it on excellent authority if there is any part of "him" left rockin' in there, you would only see it in you were literally inside his head. So while "congratulations on not crapping on the floor" might impress a child (or at the very least, amuse), it will really hurt an adult already boxed-in by the constraints of stuff he can no longer do. In face I think there is a non-trivial chance that this "dumbing down of life" thing plays a bigger role is our infamous "apathy" we hear so much about.
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If the answer is NO however, then go right ahead as now you know you are giving a reward to an adult for something that is uniquely adult, even if its menial like remembering to turn off the stove after cooking, being on-task for med taking, like I said, I don't know your environment but hopefully you can extrapolate and find like things in yours. For me, being congratulated for creating a non-trivial meal all by myself and causing no fires or earthquakes, keeping my garden growing well (my other task in life ATM) stuff like that works great. Even memory, not like oh cool I remembered where the remote control was...no I mean little things that remind me I am not all gone yet, like glancing at a frame of a classic movie and being able to immediately rattle off the year, who was in it, name, etc, or to put it another more real-world way, the missus and I watch alot of TV and movies on our media server and say we are watching Cool Hand Luke from 1968 I think with Paul Newman and MANY others. This was the era of the really great ensemble flicks. Anyhow say that was on the screen and I was able to freeze it, find a B player in it and rattle off the movies we have with him or her in it, that is a stupid mental feat I would be happy to feel good about....remembering to put on pants before walking to the mailbox? Not so much. Lets put it this way: Say that to anyone w/o dementia, regardless of age and I bet they look at *you* like *you* have brain damage...oh I know that look well...
So tomorrow is the big day. I think they could not want for a better candidate for their drugs study; someone incredibly intelligent, so in touch with all the nuances of LBD and well aware of the effects of the medications. It’s thanks to people like you Jeff that advances can be made. How long does the trial go on for? I really hope that it doesn’t mess up your ‘equilibrium’. We look forward to hearing how it pans out.
I totally get what you said about compliments and congrats, that all makes sense. As an observer, the natural feeling is to want to be supportive and positive, but you make some very important points about how to go about that which everyone needs to realise. I thought the post with the red graph put things into a very good perspective as well.
My Dad finds it very difficult to string a sentence together and struggles to think of words, and it can be tempting to try and finish his sentences for him, to the point where things can easily descend into a game of charades if we’re not careful. It is so important to give him time and space to think because when he does speak it proves he considers things deeply and all the right thought processes are there, he just can’t get them out. This is why I am really hoping that maybe the CBD oil might help just enough to enable him to make the ‘connections’ that you mentioned so that he can communicate more easily and is not so trapped inside all the time.
Dementia does seem to carry a stigma doesn’t it. It has been disappointing to see how some people have responded to my Dad’s condition. One or two neighbours have written him off with the ‘what does he know’ attitude. Mum said that she sometimes feels as if people are looking down at her as well as my Dad. We went to an outdoor show, and my Dad went off to buy himself some chips. I was watching him and he seemed to be struggling with the money so I went to his rescue, only to find that the guy seemed to be trying to fiddle him out of his money. It’s things like that which make me so angry. I’ve been quite shocked by the lack of sympathy shown towards my Dad, even by people that my parents know. Of course there are other people who are wonderful towards him, but it does seem to be a condition that so many people can’t deal with.
I really think that you and Randy should collaborate on writing a book together to tell the world what it’s like to suffer with dementia, because the world needs to know. I think between the two of you, you would have all areas covered. It’s such a common disease, but there’s nowhere near enough awareness. What you and Randy have both written on this forum is totally invaluable! I am still reading my way through all the posts. I was horrified by your recent one about the PET scan, but I must admit it did make me laugh.
Snicker. And in this we get yet another lesson in how LBD drives me nuts. OK first you at the end of your post said you like the new photo and I am all smiles and then go "Wait, what new photo?" and after much digging find that I changed my avatar here to something else in the past 24 hours. Zero recollection but thats common with me: I have basically two states, almost human and almost house-plant. And its almost like being two people or something and the funny thing is, when I am almost-human, I can recall much detail from a previous "fog" state, whereas when in a fog, the things I do when not-fogged in are a complete surprise to me.
So the good news is, when I am in the up state I can report back from dementia land but when in a fog, its like trying to read through frosted glass windows, if that makes sense. You know something (memory-wise) is out there but hazy and indistinct at best.
On a lighter note, since being forced onto disability I had time on my hands and started growing cannabis and then taught myself some things with GIMP like Photoshop for Linux and so made a whole series of dumb pictures. I only share that because the pipe in the avatar is actually known as Cannabis Rex, something another grower in Michigan carved for me out of a Black Romulan plant of his. He grows outdoors there and his plants are huge, huge enough to become the bowl of Cannabis Rex anyhow. He made a slightly smaller one for the misses called Mrs. Budder Worth , a play on a pancake syrup here. You can see them better here:
* The "finishing the sentence" bit is spot-on. The simple logic most well-meaning folks miss is this: if he cant finish the sentence, and you get the rest of it wrong, how can he stop you while STILL trying to get the right thing out? Trust me, with the spoken word I am right there with your Dad. When I am having that problem and struggling and someone else gets it wrong and takes off on a (wrong) tangent, its like I gotta reel them back in, back to the point they made their error but then STILL get the right thing out. This makes me give up on conversation more than almost anything else.
* Sorry the PET scan joke scared you, wasn't meant to and heres the thing: Randy and I "run" a web blog where we kinda let it all hang out, anything goes. I am always reluctant to direct any "normals" there because while we can call it home, it can be a bit of a briar patch for the unsuspecting. Having LBD can turn your humor a little dark. Thing is it doesn't feel dark to us.
* As for the book I have a half-baked idea on how to pull it off but it make take more energy, mental and physical than I have remaining. Not for sure and I will still give it a try but right now, to me, to these demented eyes, it looks like climbing Everest.
* I totally agree on the lack of solid first-hand info about this: when I was first diagnosed I went looking for stuff about LBD and only found stuff from the caregiver or the doctor perspective and I am like WTF? Where are the patients POV? None found really so we started that blog. Unfortunately its maintained by admittedly messy minds and so stuff isn't exactly organized there. I mean, we are crazy you know and have the papers to prove it...<smiles>
Like jeffcobb I too have LBD. N I agree. He’s not suppose to have any Alzheimer’s drugs! That’s one of the first most important things they say to remember. So please take it off! N ask the dr. What the heck! Sorry too it’s him him n you❣️
Hi sonshine, I totally hear you. I really appreciate your concern and thank you for your comment. That is exactly what I have been told and reading recently.
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