It was that link yes! Almost soothing the way you put it and a new place to be. Still a lot to take in wow.
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I felt a lot of confusion. I could see how this could be even harder for people to understand your particular problem when at any time you would or could have no clue what was going on? Man i still am kind of stunned hard to really say anything. Man dementia is scary…because like you said we were kind of taught that. Almost ingrained in us by medical professionals and only one point of view of the situation. A one way mirror. Like i said before wow. 
Stats say 1 in 3 now will have some kind of mental issue when were older and i have 6 brothers. It could be dementia, alzheimers, god i try not to think of it as all my family (parents are passed on) i live for today but run around thinking and planning for tomorrow based on what i have lost seen and experienced. To me mortality is a school a place to learn and grow. free to do what you want. You will come back but at what level? Were you evil, good. Where did we go? Where are we going to go? Too much.
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New guy Keef here – Had a severe head injury and have computer tech problems – Use for medical and recreational – I’m the one from The Home Of the Old Farts Club or OFC @MP-- - Place is imploding and I’m looking for a new home !–
Will U have me ?
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Hmmm. Perhaps then if you get really bored, here is a link to a sort of…not sure of word…fog is at about a 5 right now, only Batman TAS is making sense, at that only barely. Oh yeah, the link. While my site is a pretty strange menagerie of things, stuff thats more like Undiscovered Country I keep here. This is stuff I wrote before diagnosis, afterwards, far more recently when I have become adept at using the other place. Think: Dark City, only with less dark and less city.
By accident or intent you hit the nail on the head. With this one, the prediagnosis part is the absolute worst thing a thinking human can go through and live. I think I laid out the key bits of this elsewhere but it was always as clinical as I could make it and it took much of the fucked up part out. I will tell you briefly what its like at that point but you do this too: keep Robin Williams in mind, because only a decade of learning separated what he went thru and what I (and others like me) today.
OK In an nutshell, from the time you first exhibit symptoms and before you have a diagnosis, you start having little slip ups that can be explained a thousand different ways that are all BS. With Lewy Body however its got wrinkles because its like a cross between Alzheimers and Parkinsons, so depending on your exact dementia (brain damage, think snowflakes, no two exactly alike) you start to exhibit symptoms of either AD or PD…but slight. Herein lies pitfall #1: you get misdiagnosed (R. Williams and I share that) and get medication traditionally prescribed for that (LDopa for Parkinsons and AD but rivastigmine only for Alzheimers, etc) and while logically that makes a little sense even if Alzheimers isn’t the right answer, wrinkle #1 comes in: we react completely the opposite the way we are supposed to, anti-psychotics make us crazier, opiates make things hurt worse, sleep aides keep us awake, the fun never ends with these reactions…so a misdiagnosis can lead to horrible, no deadly reactions, including suicide. So in this scenario, until someone is convinced otherwise, you and your caregivers go walking around thinking thats the answer, you taking the wrong meds making things bad, the untreated LBD making things worse. However what also happens (and happened to me too) is that while I might have some or even many of the AD symptoms, and many of the Park symptoms, I don’t have all, most LBD folk dont for obvious reasons. However if your physician thinks too logically they go well patient as some of AD features but since they are lacking feature X, they must not have it. They have most Park features (say the shuffle but not the tremor) but not all so its not Park. And nothing in most doctors awareness even comes close to those two so what also happens which sucks like a Hoover is that because the patient doesn’t have the full set of known conditions, the problem isn’t medical and folks go down the psych route which, since the real answer has already been missed, represents nothing more than the classic Rabbit Hole. The messed up part is that because the doctor says there is nothing medically wrong with you, you and your family take that to mean there is actually nothing wrong with you, at which point marital and other familial relationships take a hit. And as if this punch didn’t need to hurt worse, since this is actually impacting your performance at work, about now you either get fired for incompetance or put on involutary medical leave; I had the latter but I was lucky since my was a brain job (engineering) and the folks I worked with at Sony were the same ones I had worked with years before and so these folks knew how I was supposed to act, so the new behavior lead me to treatment and not the unemployment line.
But you? You walk around thinking:
- There is nothing wrong with you.
- Work is harder than it has ever seemed to you and since #1, you think you just have to work harder. Had you known your disease, you would know that the added stress of just pushing harder would only bring it on faster and harder.
- Time begins to get “bendy”. You are either crazy-early or crazy-late. For everything.
- The kicker though is this: I tried to give the medical side of things before describing what its like as the patient who doesn’t know of the disease yet, but in this case I could not. You see, one other way LBD is goofy as shit (and makes diagnosis a very hit and miss affair) is that from the time you start showing any symptoms, usually cognitive like memory and 3D spatial orientation to the point where you either get a diagnosis or die, LBD isn’t just a linear mental and physical progression. One of the more confounding features is that you cycle from some definition of “normal” or highly functioning to dementia-man (memory, cognitive issues, fog, confusion, all of it) for a time and then you are back to the up-phase as we call it…for a time. How long each goes on depends on a lot of things but in the beginning you might spend 23 hours a day sane and 1 demented. At the end you are zero hours sane, 24 hours per day crazy. You can cycle in and out many times per day with little to no notice; one breath you are “you”, functioning, say grilling burgers on the grill…and the next you don’t know why you are there, whats in your hand, what you are supposed to be doing and sometimes even the fact that you are home and the people around you are family feels unlikely. You think you should turn off the fire but have no idea as to the operation of the device…you are not even sure that food is on the grill.
Now this might sound cute until you think about what actually happens in this story as a result: since you have no idea what you are doing and are not really clear on the object in front of you (the grill with cooking meat) so you just drop the grill tool you are holding, wander off and maybe settle in to watch cartoons…or more mind-fuckingly (can you tell this really bothered me?) what would happen is I am normal, tending grill, my joy and job here and I slip into that other phase…and one feature of being in that is I just sorta go “dark” mentally, I don’t notice it or say oh look, there is a missing spot in my memory. Doesn’t work like that, your mnd just stitches the last thing you remember to the first thing you recall now. . What this means to you is you took a breath and 20 minutes went by. You had no sense of it but there is nothing in your experience or memory to argue otherwise. One minute you are looking at a red, cold steak, you take one breath and WHAMMO you are looking at a cinder. I mean maybe I am weak but I was so blown away by the instantaneous transformation of delicious TriTip steak into shoe leather that my mind would not stop noodling on it and the thing continues to burn until the barking dog brings you back. You give up, shut off the grill and order a pizza thru tear-filled eyes. You really wanted that steak.
This happens several times daily, at first more time spent sane, now I might get 2-4 hours of sanity per day, when you see me writing here, the rest of the time I may not even be able to turn the computer on.
Its pretty fucked up but I am glad because I know what it is. Robin WIlliams effectively died from a misdiagnosis so they gave him the wrong stuff but also were telling him what every patient is told: there is nothing wrong with you, its all in your head…and you walk around living the above, with every test telling you and them you are FINE. Hence, his end…and because of that, more folks learned and even though it was also a fight of the ages in my case, I got lucky that my infamously itinerant profession stopped for me with a home in Las Vegas, which also by freak chance is home to the Lou Ruvo Brain center at The Cleveland Clinic, some 15 miles away. Like the Mayo clinic only specializing on the brain, so after six shit doctors and three misdiagnosis (plural/) these folks sorted me out with just a few tests…but getting to that diagnosis was pain itself, both inside and out.
I will leave you with one other little oddity, since this is a weed forum. Of all the symptoms LBD has, only a few observable ones are unique ONLY LBD and used for a final diagnosis for insurance purposes since AD and PD don’t do this: The most common unique feature of LBD is that…you know that thing in the brain that basically paralyzes you when you dream so you don’t act out your dream in your sleep? Well LBD shuts that off so wives are getting slugged in their sleep while I am fighting a dragon or something. Also same thing causes wicked sleep walking as well because the patient is about 50% awake when it happens…so the docs check for those two things specifically and that alone delay shit for a long time…Well fellow readers of this forum, I did some research and it turns out that long-term cannabis use either greatly reduces or eliminates the REM state…or to be more exact, the heavy long term use prevents you from getting from Stage 4 (Deep Sleep) to Stage 5: REM…you just stay in 4 longer so you still feel rested but because you slip the dream part, there is no acting out or sleep walking so according to the DSMV (whatever the disease and prescription holy book) I don’t have any definite disease…so just be aware of that last part, I sure didn’t know it and it left me in hell a year longer than necessary…knowing makes ALL the difference in the world, it has made the unbearable, bearable. Of course, the fact that doctors can neither deny nor explain the benefits of the 18:1 oil doesn’t hurt at all because now I basically have a guaranteed liicense for life and since it came from the doctor (well, he repeated it back to her) I get special dispensation to order as much RSO and flower as I “need” and to help offset the cost of that, special priority has been given to the grow room, of which I reign, so I got a doctor saying yes, go ahead and use it in place of our medicine, I have a wife that is learning to be a caregiver (equates care with pot availability) who is also learning to be a bud tender for when I cannot (equates to best of breed lights, growing supplies, etc. I don’t even have to ask her for stuff anymore; she walks thru the grow room and comes up saying “hey think we need some more light here, looks a little dark” and next thing you know, The Amazing Stork (TAS) arrives with the Mars Hydro latest. Combine that with two really cool dogs and an unlimited supply of my favorite TV shows, movies, animation and anime, not to mention some 6000 game roms from the 8 and 16-bit ear (and sweet handheld emulators to play them on) plus since I worked for Sony I have like every sony play device (hardware) from the PS2 to the 3 and 2 PS4s and a Vita. I have no need or reason to ever leave the house if I chose not to…I just make the most of those periods of sanity…
And now that I have said all this, I will no longer as wel are here to share the joy of growing cannabis at home…if you must think of something, think of cannabis actually, medicinally helping me and the biggest part of that is I have some big brains documenting my progress and have become actual advocates of using cannabis for mental disorders. I mean thats cool to me because all my life, The Man has been trying to convince me pot CAUSES mental problems. There is a certain irony at play here that I find deliciously subversive. Like last week…yes I live in a totally legal state and yes my pain management doctor know all about my cannabis use (I am open with all doctors) but still…last week was out first appt with her since the quarantine stuff started and she had us do it remotely with Hangouts I think but the kicker was the whole time she was asking us the usual symptom questions doctors ask, Beth and I are passing around an infused doob I had made and my infused joints tend to be real smokers:
So not taking any steps to conceal anything. She askes me a question just aftrer I hit and while I was holding it and I sounded like every stoner since 1960, blowing a huge cloud into the webcam., Just a wild sitatiuon I never thought I would see let alone do in this lifetime…
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