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Cognitive Dysfunction
I recently read comments from a couple of folks with MS who are so impaired cognitively that they require full-time aides, notes taped everywhere, someone to manage their finances, etc.
My heart goes out to those people. From what I've read, that degree of cognitive dysfunction isn't common, but it surely is sometimes part of MS. I found myself thinking hard about my own cognitive issues. Sometimes we call it "cog fog", and that's how it manifests in some of us. That "just-woke-up" feeling, disembodied, cobwebs on the brain, slow-motion. Pretty common, from what I understand. I realize that I tend to overstate my cognitive issues. I process information more slowly. I can't think on my feet as I once could. I have trouble sometimes finishing a thought, calling up a word or name, focusing on what someone is saying. I DON'T, however, forget appointments or to pay bills, get lost in the grocery store, ask the same question three times in five minutes, or live in the fog full-time. I tend to say things such as "I'm brainless" or "My memory is shot" or "I'm such a zombie." No, I'm not. I don't think anyone but my kids or my closest friends even notices. I think I "exaggerate" out of frustration. I USED to be quick-thinking, the one who remembered everything, faster than the contestants on Jeopardy, the Vocabulary Lady. My cognitive dysfunction is upsetting, but mild (in the scheme of things) I see that more clearly now. And I'm thankful for that! |
I am in a wheelchair, my physical is way effected by MS, but my cognitive seems pretty good. (although Aging throws me a zinger once in awhile).
I hate when people on the phone ask me "Is there someone there who helps you I can talk to" when I do things. NO. The stocks are mine (all earning thank you, bought by earnings on other stocks), the money is in my name only (an inheritance) and I pay the bills and handle our money and taxes. "Can she fill out a form" a receptionist asked my husband over my head. I was good, I kept my mouth closed and didn't say "Honey, I'm smarter than you." I think sometimes people think I'm a great crip because I don't drool. People read a little something, think they are now an expert. |
I have recently been very successful in grad school but still panic when I'm at a loss for words or say the wrong word when talking. :(
I'm 48 years old for Pete's sake, isn't any of this just normal aging? The thought of having cognitive difficulties in addition to mobility issues is horrible. :mad: |
I have the cog-fog. Some days are worse than others. I have a hard time remembering what I did 2 hours ago. I wouldnt remember eating and get into a heated argument with my dh about it and he would have to take me to the kitchen and show me my dishes. I can still pay bills, but need reminding when they are due.
I have a notebook I write EVERYTHING in or else I would forget everything. Appointments, shopping, dh days off work, etc. I do repeat things several times when Im having a bad day. I forget my words constantly. If I cant remember what something is called I start to describe it and hope the other person can guess what Im talking about. I will be talking and stop mid sentence and just forget that I was talking. Ive done that infront of the neuro, and he doesnt seem to worry about it. I told my dh that I now understand the frustration his father must feel being an 80yr old man after his brain tumor surgery. This disease just makes me feel old... walkers, canes, scooters, help me I cant get up buttons.... I get excited when I see a rollator on sale :D |
I have had cognitive difficulties because of MS. But then again, I always was a little bit too smart for my own good. :wink:
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I'm better at certain times of the day. First thing in the morning is always better than late afternoon. If I'm overly tired I have a hard time finding the words I want to use. Could be age (I'm 51)....could be MS.....could be both. If I forget to brush my teeth then I'll worry. :p
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I have the fog...can't organize, process, or remember. also have verbal retrieval problems.
It's sad, because I was a "gifted" student. No more:(:( |
Sometimes I freak myself out by thinking, "What if I already AM that bad and don't know it??"
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I play Trivia with you and others and find none of you are slow or inept..:mad:..:) |
I'm 35 and about to go into a medical to insurance to employer 'appeal' for modified work duties due to cognitive, in part (the pain and constant headaches/migraines and overall stress level in role being other aspects).
I always thought I was so lucky, my cognitive wasn't suffering... until my manager pointed out I had re-used the same word 5 times in one 2 line paragraph. I used to work as an editor/proofreader for newspapers and have been a writer since I could pick up a pen! I was crushed and so disappointed/dismayed. I structure things: Walking in the AM, I get back, first thing I do is hang up coat, put keys in purse, turn on coffee maker (which is set up before bed), go to bathroom, turn on hot water, back to bedroom, de-robe, back to bathroom, opening office door on way to allow in air before work, etc etc. I even make sure I follow a series of precise steps for each 'aspect' of my day, and when things don't fall into place, I panic like mad! You explained it very well B2Y, what I'm feeling at work now.. I'm expected to respond to emails from clients. Perfect job for M.S.'er. I have time to compose my thoughts and ideas before replying. Low stress. Then they added more and more to that role, wanting me to also take inbound phone calls and place outbound. The last outbound call at work I got off the phone in a cold sweat. I could not follow my client's questions "On the fly"... thinking on my feet just escaped me and I blanked. It was horrible. Now I work to get all parties involved to understand that I can't be on the phone with clients, let me do my job and only one job, as it was before when was healthier (and happier, not feeling like such a letdown). |
:circlelove:(((((Laura))))):circlelove:
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Cheer up - jackD's version...
You may NOT want to know this but they did a BIG Million Dollar study and found that the happiest, most content, impaired thinking MS folks were those who had progressed to the point that they could no longer remember what they can't do anymore.
So get a little worse and things will seem much better. jackD AKA Braindead |
Jules, some cognitive difficulty may be aging, but my cognition is not worse than it was 30 years ago when I was at the height of my neuro (undiagnosed) difficulty. I completely lost the ability to think at more than a pre-school level when they put a toxic rug in my college where I taught. So I had to quit that day. I couldn't even wait. I had to let them get someone to take the class. I had had difficulty with lights and other things before, but this was the last straw.
At that time I was tested cognitively, and my IQ had gone down about 18 points. I think it went back up. I never stopped attending Mensa lunches, at least when I could get there in the car, when I improved enough to drive again, after the horrible rug incident. I have what MS pundits call "loss of executive function". It means I can't "file" things. This makes doing my records and taxes a misery, but I do them all in increments and don't scold myself when I have trouble. That's the important thing, not to blame yourself when you lose cognition. Today was a bad cognition day. I had to deal with H and R block over a tax glitch from 2010, and I left my wallet at home because I was unable to coordinate everything very well. I made several cognitive boo-boos, but I continued on and just told them I had a neuro illness and it slowed me down. And they believed me, I think, because sometimes I'm "sharp" and they can see that this comes and goes. But I felt sad coming home alone, still whacked in the brain but hoping. |
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"Hinsie and Campbell6 define euphoria as a morbid or abnormal sense of well-being. Freedman and associates use the term to denote an altered state of consciousness characterized by an exaggerated feeling of well-being inappropriate to apparent events." http://www.cnsonline.org/www/archive/ms/ms-01.html |
This discussion makes me realize how little science knows about MS. How do they know those with vapid smiles are suffering internally? How on earth? Yes, posting the study might be worthwhile.
I have learned over the decades that the knowledge about MS and other neurological diseases is poor. The only thing I go on is "what works". Some people seem to do marvelously on LDN and I wish I could take it, but unlikely to work for me because of my Porphyria. The Swank diet works for me because it's obvious that my symptoms increase if I get off it for more than one day. I start to stagger if I get off it when traveling or something like that. So that's another "what works" for me. I would definitely try LDN if I could take it. |
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I agree Mariel. When I go on vacation, while I'm such an angel about my diet 355 days of the year, the other 10 I'm the devil. I'm like a child in a candy store about eating. I don't read labels! I don't count fat contents! The only rule I'm steadfast about is not consuming red meat. My MS becomes the fist of justice soon after, everything flares up to some degree to remind me "It's no honeymoon princess, put away the horns and the tail!". It's simply not worth it, and I know better every time. Last vacation I was a lot 'better' (behaved) and cooked a lot more for hubby and I. He's a type 1 diabetic so we both fared a lot better in the end ultimately. (my cognitive work battle rages on, speaking of the first of justice. Tough week's done, work appeal for modified work duties/accommodation has been submitted for review via insurance/doctors, now the waiting game and follow up appointment next week) Oh, I had a situation today where I completely fumbled over wishing a client (very nice lady) a Happy Mother's Day. I almost wished her a Happy Birthday (not EVEN kidding), thankfully I was able to giggle and she was able to giggle and I explained it had been a long day/week - hey, it's Friday. Considering that was the second call of my day (8 hour shift), yeah... I shouldn't be on the phone. What a mess. I'm glad we weren't busy. :o {{{{{{{{SallyC}}}}}}}}}} :) :) :) |
I have so many people say "dont you remember when we..." NO! I dont! Friends will say "i just told you that ten minutes ago" I say "i remember some of what you said, but not all, can you repeat it?" I just cant hang onto a thought nowadays.
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My manager got snippy with me the other day because I asked her a question I apparently had asked her several times before, then I asked if she could send me the forms again (workplace accommodation stuff cont.) and he reply was "They're the same forms I sent to you 3 times already!!!". I don't think this was a professional answer, but she's also not in my shoes, so I can see both sides of it: Me knowing that my brain's like a block of Swiss cheese out on a Texas sidewalk in mid-July, and her seeing me as the unorganized, scatterbrained, handful of an employee who can't get her carp together to pan-fry it. I apologized to her and located the stuff I needed on my own. Thankfully I found it tucked away for safe keeping (oh thank you thank you THANK YOU creating folders capability in email!) and another kind, patient manager was able to confirm my questions for me. Ouff. Some days. Enjoying my 3 days off. Pampered myself today to a haircut and colour at the salon. It cost way too much but I don't care. I had an awful week and darnit, we deserve to pamper ourselves sometimes (and don't do enough if you ask me!). |
Oh, my, thanks for posting this.
I'm still, as yet, not completely dx'd...at least by my neurologist. My PC has already said MS & is treating me as MS. Not sure how I feel about that; not sure that it matters, as I prefer to move forward & not back. I've been on this derailed freightrain of a life for the last 2.5 years. First signs of something wrong were memory issues & speech problems; specifically, lucky me, not being able to say what I was thinking; losing vocabulary, speech pattern delays...ya know, that word is right on the tip of your tongue...and then it's completely gone? Going to a drive-thru & asking for ketchup (I thought) & having the girl look at me, like I was speaking a foreign language...so I repeated it...still same look. VERY Scary. I always was indifferent to my math skills...losing them, like not being able to calculate simple addition & subtraction in my head is also very disconcerting. My family is used to me being able to handle all the finances, all the stress-inducing situations & most all of everyones "help me" times...both I & they are at a loss for my less than stellar brain fog issues. I'm used to being the one to find the answers...not be the one who needs the answers. The physical problems are less of an issue for me. Don't get me wrong, they are major problems but somehow, less worrisome, if you get my drift. My reason for posting this is this: my company (not necessarily my direct boss) has said that they can't really do anything for a medical condition, as long as I am continuing to try to get help or be tested; but, I wonder, if money issues prevent me from getting that dx (from the neurologist), can I be fired for issues beyond my control? It's like walking a tightrope sometimes. |
It hurts to read of the struggles here, Laura, Dejibo, NewtoNet, and yet it's a comfort to me to read that others are like me, struggling along. It seems most of us were once pretty strong "thinkers", and now we feel diminished and have to put up with some people who are not sympathetic or helpful with that.
Laura, once I called on a student in a high school class I had in CA, long ago, long before dx, and said "hello" instead of her name. She thought it was sorta funny, but that was my "advanced" class, who were capable of some degree of toleration. Today I am trying to go through papers, and even though they are only MY papers, not an employer's, still it's a struggle. I don't have a good filing system. I might buy a new desk if I lived in an area where such things were easily accessible. Unfortunately I can only buy either a metal or all natural wood desk, so my options are not good---impossible at Walmart, HomeDepot, Lowe's etc.. There is a store here in our small town which does carry all-wood furniture made by Amish. I so wish I could buy a desk from them, and a side table to the bed. Their furniture must be 3 or 4 times the cost of a desk at Home Depot. When we lived in Seattle, my husband could go get me a metal desk at a Boeing furniture sale, for maybe $50. I am so sensitive to ersatz wood that I cannot use a normal desk's ledge to put my keypad on...I must have wood that is 100% natural, not even coated. So my desk ledge, which is teak and nice, but coated with something, will not do, and I told you how I bought a piece of real wood at Home Depot, and the man said they had only 16 linear feet of real wood in the place, the rest was composite from China, and, he added, all toxic. I have to wear a carbon filter mask to go into Home Depot. Supposedly this sensitivity is from Porphyria rather than MS. It is probable that through some odd genetic weirdness, I got both of these diseases and I don't apologize for being weird enough to have two diseases which cause somewhat similar neuro symptoms. But I usually don't tell people I have both...too hard to explain. And you all know I have Polycythemia Vera too. today the struggle is almost not worth doing, but I've put off the "papers" too long. So I have to do it even if cognition is impaired. I told my son today that he keeps telling me I'm stupid (or something slightly less bad) but then does not help me with technical things (on the puter or printer) slow enough to allow me to learn. I think he got the message...he is trying harder these days. |
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I'm sorry to read that you're dealing with 2 conditions at once. It's one thing to deal with cruddy MS, but to deal with Polycythemia Vera (I am completely ignorant to this disease/syndrome - I'll have to educate myself) as well, that takes one tough and brave soul, from what little I have read from your post (sensitivities and such). Wow. I do hope your son can slow down for you and begin to learn how to accommodate at your pace better. I think he'll learn with time what works best for the both of you by the sounds of things. :) |
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There's a number of things to 'factor in'. This is why I was so utterly confused. In my case, I had already been diagnosed with MS. I had already disclosed my diagnosis to my employer as of March 5, 2008 (been employed with them since November 2001). They have both short term and long term disability through a third party insurance company. I'm a salaried worker (full time hours, 37.5 hours weekly). So with my MS diagnosis, to get a workplace accommodation - permanent, or a change to current workplace duties or expectations of current role - I need to complete an Employee Declaration and send that to my insurance company (which I did on Friday by fax). Then I wait for them to call me back with a case number, and details. From there, I BELIEVE my doctor's office fills out their info, but what I did on my side was authorize the insurance company to go to my GP/family doctor and request as much/any medical info they wanted on me to provide for work accommodation to my employer. I'd get in touch with your HR group for further clarification, or insurance group (if applicable), however it seems (where you say your company has said) that you've already been in touch?... what is it that they won't support in you trying to get answers/diagnosis? My insurance company supported me through short and long term disability, reporting to my employer, throughout the 'limbo' period and then up to my return to work full time after diagnosis, as well as relapses, etc. I really hope you're able to get some help in this, it's the absolute PITS when we just want to be productive members of society within our capacity and not do ourselves in in the process. :( |
I'm one of those that forgets to pay bills! I have so many cognitive problems that when I went before the Judge for my disability and he asked me a question about "our profession" (his words) (I was a Paralegal) whatever I said made him just stop and stare at me. I never did figure out what I said! Whatever it was proved to him that I could no longer work. And back then I was doing pretty well but now I'm so much worse.
I now have all my bills paid automatically but still have a list of when the bills are due which I check off each month. I have a large desk calendar where I write everything down and I mean everything. Especially if I need to pick my DD up from somewhere. So far I haven't forgotten her so I'm doing okay. I have a list of cleaning I need to do and mark it off when done. I make sure to tell people when I first meet them that I have MS and many cognitive problems so they'll understand. This way when I say the wrong word(s) I can say I warned you! To look at me you'd never know I had MS and I've had it for a long time. The funny side is when I say the wrong words it's halarious - after all if you laugh at yourself, it much more fun! The sad side is when I forget to make dinner. Oops, sorry family. Guess that's what frozen quick prepare meals are for. The awful side is some family members have said nasty things about my cognitive problems. |
Karousel, some of the drugs we take make it even harder to think. I am taking few now,
but when I first had an MS dx I was tried on several things which made it even harder to do things. Baclofen made me run into walls, as I didn't have enough eye/body coordination to sense the walls approaching. Several anti-depressants made me more depressed because they slowed almost all functions, as well as increasing spasticity. I take tiny amounts of Klonopin and Propanalol, and these do not slow me much, or interfere much with thinking. |
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The medication + the disease progression into cognitive disruption is quite a cocktail. :( |
Laura, that must be a challenge (understatement) to work while on drugs which slow you down. I worked as a teacher for 13 or 14 years while taking Meprobamate, which stopped abdominal spasticity and allowed me to work relatively pain free. But it (unknown to me) was one of the ten worst drugs for people with Porphyria, and aggravated my neurological status until I was finally dx'd with MS, and I got off Meprobamate by taking Klonopin. I had tried for a year to get off Mepro, but could not do so until the doc put me on Klonopin and said it would enable me to stop Mepro cold turkey, which was absolutely correct. Gradually I lowered the Klonopin dose. I don't think I take enough at this time to slow thinking much, if at all. But it takes the edge off spasticity, in combination with the magnesium I take for that. It also sort of soothes bad memories, which I have a lot of these days, living alone making it worse.
It was a wonder I could teach when on Meprobamate. Do you take any magnesium? It's good for spasticity, and thus lowers pain. I was put on it by a neurologist when I was unable to take Baclofen or Zanaflex, and it worked well without side effects. It can cause diarrhea, so the neuro said to look for the one which is least causing of diarrhea. Since I started magnesium, my neurologically caused constipation has almost vanished. |
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I turned the bills over to DH. It took some getting used to, but he really shines at it now. All our cards are paid off, so there was no worry there. We have the simple things like electric/phone/cable/oil to worry about. We now use our tax return for our oil bill, and the rest is just monthly stuff. DH actually understands now when I turn off the TV as I leave a room. or shut off ALL the lights when we leave. or dont stand in front of the fridge for 20 mins trying to see whats in there. Shower vs bath, and consolidate loads of laundry instead of just chucking a few things in.
Someone says "what did he say?" um...I dont know! When is your appointment? um...let me get my calendar. I used to learn at a very quick pace, and now I am doing computer graphics and ...its SLOW! I am learning how to manipulate photos so I can change the color of someone shirt, or add a row of flowers in their gardens...its HARD! I feel so ...blunted. that is a great word. blunted. MD says what did we discuss last time? umm...no idea! its a good thing im not a liar, I would be in a world of doo doo as I cant make up stuff on the fly. I wouldnt be able to keep my story straight. My sister is a pro at lying and it amazed me at how many tiny itty bitty details of her story she can remember to pepper into the story. im sorry...what were we talking about? :o |
Oh I forgot, a Doc gave me a cog fog exam in the hospital last November and he said I passed with flying colors. Oh, I have the usual cog fog from age/MS/whatever, but no biggie deal.
I'm lucky so far, because I know some of you suffer greatly. :grouphug: |
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It just nice to know I'm not alone in my daily struggles. :grouphug: |
Cognitive issues are the worst for me. Most of the time, to look at me, you'd never guess I had MS. But my mind is so blank, cloudy, dark, foggy, and I have a hard time really caring about anything. I've forgotten my kids at school, regularly forget to feed them (& myself), can't be trusted to put things in the mail or pay bills. It's so hard to focus on getting anything done!
Then I get really angry and disappointed with myself, because suddenly the whole day is gone and I haven't even brushed my teeth or gotten dressed, much less tackled my to-do list. Today was one of those days, and by the end of it I was too frazzled to even tuck my kids in because they got on my nerves by bickering in the car. This disease sucks. |
You are typical, Karousel. A social worker told our support group that cognitive is the highest symptom for MS, although a few people don't have it. But most do.
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Cognitive issues
I have good days and bad. I am a licensed insurance (property & casualty) agent so I have to stay "sharp", but there are days when I wonder "who am I and how did I get here?" My IQ was pretty high when I was younger, so I can't help but blame those foggy days on MS. My husband says it's just age, but I'm only 57. I guess it's good to know I'm not just getting "old". :)
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If I spend one day doing a bunch of things, even just a couple, like going to grandson's soccer match and bringing him home, plus going to the doctor, the next day I'm likely to just sit in front of this computer and do nothing much. feel like not moving. Then the third day I'm able to function again. When nerves don't process things fast, maybe they have to catch up. Sounds ridiculous in a way but maybe.
I think it is a great hazard to us to feel that "angry and disappointed" you mention, but I think we must really work not to blame ourselves for the periods in which we can't do much but stare at something. I no longer stare at TV. I turned it off ten days ago because I got disgusted with it. I may turn it on sometime, especially when Downton Abbey finally comes back on. Politics has me fed up, so off with the thing's head until the morons are finished laying waste to one another. |
If it was just me, it wouldn't be so bad, but sometimes I just really don't feel competent to be in charge of small children!
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I went to lunch with my sister on Monday. We walked into the restaurant and the host asked me "do you want a booth or a table?". Simple enough question. I just stood there.....not able to process the information. Finally my sister said "we'll take a booth". I told her - once we were seated - that it was the cognitive issues that causes that type of thing. That host could have said "do you want me to pour ketchup on your feet?" and it would have made as much sense to me as the "booth or table" question. I hate it when that happens....thank goodness it doesn't happen often......but in a way I'm glad she got to see that. That's something you can't describe to anyone. They have to see it for themselves.
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That's one of the reasons I knew I had to get done work. Even though it has always been temporary, just a few seconds, I couldn't expect customers to stand there patiently while I processed a simple question. It would have to come the point of customers not trusting my responses when I DID respond. I think I did a good job of "faking it" until I pulled it together, but there were some awkward moments, at least from my point of view.
My brain freeze moments have ALWAYS been in response (or I guess I should say NON-response) to the spoken word. I've never had that happening while reading, for example. Or something on the TV news. I've never stood there not knowing what to do with a can opener or blankly staring at my checkbook. But every so often, especially when it's a QUESTION being directed at me, it's almost as though the person is speaking a foreign language. I have to realize it's a foreign language, translate it into MY language, and then I still have a couple moments of knowing I'm supposed to say something, but being unsure just what. I replay the question, and then I'm good. As I said, even though it seems like forever, it really only lasts a few seconds. My brain is still on dial-up. |
I love that "my brain is still on dial up".
I wish we still have dial up, in the phone system. Both land line and cell phone have glitches, such as delivering messages from one to seven days late. My dial up phone didn't have those glitches; it wasn't expected to perform miracles. Once I forgot my own name when I was sitting in a circle at a yoga class, where we were introducing ourselves. I was sweating, hoping I would remember before they got to me. I did remember in time. But it was a stress and that yoga class was a special stress that put me in bed for months with a very bad attack. Recently I forgot my daughter-in-law's name. This was even worse than forgetting my own, as it would have seemed I didn't value her. But I was able to bypass the necessity of knowing the name. This has only happened once. It's not like dementia where you forget consistently the same things (I think that's what dementia is--there were some Alzheimers' patients in my rehab after I broke my leg in Seattle--they would tell you the same story over and over, as they never remembered they had told it before). |
Oh my gosh, my manager asked me my 'goal' for the week and I did the "deer in headlights" reaction. Blank stare. I just sat there. Then mumbled incoherently (keep in mind, I work from home, so she can't 'see' me, we're on a phone call conference).
She probably thought I was out of my gourd. I hope she doesn't think I'm hitting the bottle on the job or something... I told her I was taking a medication that impairs my thought processing/cognitive, but she just doesn't 'get' it. It sucks. I totally appreciate you all sharing your stories :grouphug: (by the way, I'm still doing the same crap 'role' at work, still trying to communicate effectively with clients, still waiting on my accommodation to be approved although I've seen my doctor and my insurer has faxed the questionnaire, which I completed, to my doctor's office and has been in contact with me. Conveniently, my manager's out on vacation! Nice huh?) |
I'm sorry you're having to wait, at work, for the changes you need made. I have that thought processing glitch, at times, even though I am NOT taking a med which does this.
My klonopin dose is only .5 per day, divided up into 3 doses, very small, but enough to help with stiffness and spasticity. |
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