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 Lewy and Phooey, or the Squirrel and the Crab 
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Lewy and Phooey, or the Squirrel and the Crab
Sigh. I don't know how you folks have managed caregiving for LBD over many years. My parents are 95, and, even though my mom is comparatively mild so far, the strain is increasing, especially for my dad. He simply does not get it that her executive function is toast, and that her delusions are not subject to banishment by fiat. He is tired, and alternates between depression and angry frustration. He finds it especially baffling that she can watch Wheel of Fortune and beat all the contestants to the solution, or do the crossword puzzle in the newspaper, or remember the best dinners coming up on their retirement community's menu, but she can't manage to take her pills even when he puts them out on the table for her, or to write a few birthday cards to her friends.

She had actually been doing pretty well on a low dose of seroquel started a month ago. But during the hurricane, they were watching the weather channel for hours on end, and there she was, back to telling us that the lady in the neighboring apartment told her that the building was on fire and they needed to evacuate. I have tried without success to ban the 6 pm news ("if it bleeds, it leads") on the grounds that it just promulgates hallucinations and delusions about kidnapping and fires. "Just watch the baseball game!" I beg (she has been a die-hard Giants fan since she got mad at the Dodgers for firing Leo Durocher and then fell in love with Willie Mays.) Not that the Giants are doing that well right now, but it's a familiar and benign kind of worry. But no, every evening when I come by they are watching some new catalog of local horrors.

My mom's problems are, so far, relatively benign, compared to many of yours. But my dad is beside himself. His latest stress is over the nose-scratching (not itchy, she says it just "bothers her" so she scratches it, sometimes till it bleeds.) Soothing lotion helps briefly, as does the purple unicorn squeeze-toy or the blue stuffed dog, which keep her hands busy. But he gets frantic and just yells "Stop scratching!"

I've talked him into having some help a couple of mornings a week, and I stop by every day for a while each evening when I leave work and go for several hours on weekends (they live just 5 min from my office), and my daughter, who lives nearby also, goes several times a week with the great-grandchildren. He probably needs more help but is stubborn, heels-dug-in, and flatly refuses to consider that. They could move to assisted living, but would have to downsize again and he'd lose his study, which would be devastating. Neither of them needs SNF-level care. Yet.

So I go over and try to sort out whatever Lewy-driven squirreliness my mother has fallen into, and try to soothe his crabbiness. He so wants to do the right thing, and it hurts to see him so miserable. And so dead-set against anything that might make it better... OK, now I have finished whining for the evening!
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Sep 02, 2011 1:22 am
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Joined: Fri Dec 31, 2010 3:07 pm
Posts: 1039
Location: Minnesota
Post Re: Lewy and Phooey, or the Squirrel and the Crab
Coy loves to watch the news, for about 2 hours a day, but it doesn't seem to bother him. I haven't watched or read news for years, because all the blood and gloom does bother me. (I'm probably one of 3 people in North America who did not watch the 9/11 coverage, preferring to get my horror one short news bulletin at a time, on the computer.) So I don't think news should be off-limits to all Lewy folks, but if you think it bothers your mother, I hope you can convince your dad that that is one concrete practical step he could take for her sake -- do something else at sundowner time!

I can relate to your dad's frustration about the specificity of the cognitive loss. I find it absolutely fascinating that the mind can work well at one thing and completely fail at something else. Or that it can be impaired one day and not the next. Coy was absolutely amazing at learning his way around a new city quickly, and always knew how to get anywhere in our own area. Now he sometimes retains the ability to navigate while I drive, and sometimes is totally confused. The trouble is, he always sounds confident and I don't know whether to do as he says or trust my own instinct when I'm driving and he's giving directions. :shock:
I think sometimes people take this variability in cognitive ability to be a sign of faking impairment to get attention or for some other reason. At least those of us on this board quickly learn that is normal for Lewy, if we didn't know it when we joined.

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Jeanne, 68 cared for husband Coy, 86. RBD for 30+ years; LDB since 2003, Coy at home, in early stage, until death in 2012


Fri Sep 02, 2011 3:23 am
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Joined: Fri Jan 15, 2010 9:33 pm
Posts: 3395
Location: Vermont
Post Re: Lewy and Phooey, or the Squirrel and the Crab
I used to think of those big fluctuations in cognitive ability like this:
if you have a series of pipes with stuff running through them and every once in a while some big object plugs up the pipes, it affects the outcome. The pipes eventually become unplugged and everything is running smoothly again. Then a different pipe becomes plugged so different outcomes (or symptoms) show up, and the cycle repeats itself. Over time the pipes become more and more plugged, so things rarely are running smoothly.
Do these Lewy bodies perhaps move around in the brain from place to place "plugging up" (or disturbing) the normal electrical impulses across the synapses, or do they emit some chemical which has the same effect? Who knows?
Anyway, this analogy helped me explain to other people who couldn't understand why my dad was so clear and "with it" sometimes and so out of it other times. Lynn

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Sep 02, 2011 9:16 am
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Lewy and Phooey, or the Squirrel and the Crab
Oh Laurel, I so totally get this! I love the subject title especially because I've always been known as the B*@#h of the family so the "squirrel and the crab" fits my mom and I to a tee. My mom would watch "Law & Order" 24/7 and I'm sure she's seen every episode several times, and I just can't watch it because I can only take seeing so much of the awful things we do to each other ( and I don't care that it all gets fixed by the end of the 60 minutes!). So far I think she's just comfortable with it because she knows all the characters and it doesn't seem to make her fret so whatever makes her happy!

Also, I woke up this morning to huge bruises on both of Mom's forearms. When I ask her what happened she said "they were itchy, so I scratched them" and I want to yell at her "Quit scratching!!!" Among all of her other myriad problems she has atrial fib so she takes warfarin to thin her blood so when she scratches she ends up with these huge bruises! We're going to have her final iron infusion this morning and then to her doctor's office to have her leg infection looked at. Her regular doctor knows that I take very good care of my mom and has complimented me on it several times but he's on vacation this week so we're seeing the ANP in the office and I cringe thinking about what her reaction is going to be between the infection and now the bruising. Also, we're having a huge family reunion and picnic Sunday so we're going to see all the relatives ( my dad's side) that we only see once a year or less and and most of them haven't seen mom since she started her (obvious) journey into Lewyland. I would have her wear a sweater to cover the bruising, but it's supposed to be 90 on Sunday....sigh. I know I worry too much about what some others think. I know that my immediate family knows she's well cared for and that's what really matters, right?
I just want to cry but I don't have time! Wish we could just send Lewy away for a few days 'cause I sure do miss my mom.

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Fri Sep 02, 2011 10:03 am
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Joined: Tue Dec 29, 2009 2:28 pm
Posts: 464
Location: Minnesota
Post Re: Lewy and Phooey, or the Squirrel and the Crab
Ellen, for my Mom, it’s NCIS. I think she has a crush on Mark Harmon.

Lynn, the pipe analogy is great. I use an electrical grid, myself. It’s like watching the lights of a city go off one by one, but then some guy in the dark starts up a generator and his lights come back on – for a while.

I know what you mean, Ellen, about the bruises. Mom also bruises easily, for the same reason. Sometimes, if I just touch one of the bruises, she bleeds. She has little dry patches that show up on her arms and legs and she pinches and scratches them. Then she wonders where she got her bruises. I gave up trying to cover them a while ago. It was useless.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Fri Sep 02, 2011 10:40 am
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Lewy and Phooey, or the Squirrel and the Crab
Jeanne, you are exactly right about the specificity! My mom's sense of direction has always been excellent and is apparently unimpaired (I took her the back way to the clinic in Sacramento last month, and she had never even been that way and immediately figured out what I was doing and where I needed to turn to get there.) And yes, my dad does attribute the variability - both from time to time and between functional domains - to some sort of perverse contrariness. I think he knows better intellectually, at least he's heard he explanation enough and he's a smart man. But it just feels "wrong" to him.

Lynn, I don't think the Lewy bodies move at all (though since we only really see them post-mortem, who knows.) But the brain is remarkably plastic and there are a lot of neural pathways. I think what happens is that they are accessing alternate pathways, maybe even constructing a few new ones, and this works - at least sporadically - for a while. But as the pathology builds up, the effort to find alternate pathways becomes too much, and the access to them too limited. I notice with my mom that after making a big effort in a social setting, she is more tired for a while afterward. My analogy is that it's like trying to navigate around town with a lot of traffic and someone keeps blocking off your usual routes. Sometimes you find a new route that you didn't know about but that may take longer or be a worse drive. Sometimes a new road might open up but that's less common. And as enough roads get cut off, some neighborhoods are just not accessible at all. I like Kate's grid analogy, too...

And thanks, too, Ellen and Kate, for the additional comments of folks on the scratching and bruising thing! My mom has very delicate skin - she is very fair - and her skin tears and bruises easily also. For that matter, my dad bruises easily. they look some days like they've been having a playground fight. I make sure they have hypoallergenic soap and lotion, and try to keep them well hydrated, and all of that. Luckily everyone where they live knows us all, and is used to the challenges of aging. (They live in a very nice continuing care community - they are in independent living now but have many options as things get worse.)

The saddest thing about the subject title is that my mom has always been extremely bright and amazingly well organized. When I was small, first my dad was finishing his doctorate and she was working, then he started teaching and she went to college and became a speech pathologist, then she was working full time and got her masters part time. My dad is a bright, funny, generous-hearted man, a premature feminist, and was loved at his college for his kindness to students and staff. Now her competence has been eroded, piecemeal, by Lewy, and his kindness is worn thin by caregiving. But I remind myself daily how lucky we are to be nearby, to have the outstanding medical resources and access through my colleagues at the med school, and to have my mom's disposition increasingly sweet despite Lewy the squirrel.
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Sep 02, 2011 12:20 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Lewy and Phooey, or the Squirrel and the Crab
We all miss our LOs - who they used to be. It is so sad to see the deterioration but it's a nice change when they have a good moment, hour, or day, isn't it? I always wished I could freeze my dad in those moments, especially as they became shorter and fewer. Lynn

_________________
Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Sep 02, 2011 12:40 pm
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Joined: Wed Dec 30, 2009 1:46 pm
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Location: WA
Post Re: Lewy and Phooey, or the Squirrel and the Crab
Laurel, it seems that men have more difficulty accepting that they need help taking care of their LOs, maybe for the same reason they don't like to stop and ask directions? :roll: Hate to generalize but....even so, he does need a break from time to time.

Not to be melodramatic but it's usually the husband who does a murder-suicide in a chronic illness situation. Happened to my brother's neighbors a few years ago. He helped them whenever he could but the husband refused to get outside help with his wife who had late stage MS. My brother found them in their garage dead from carbon monoxide poisoning. Their children lived out of state and were horrified. But perhaps they should have intervened sooner, hindsight being 20-20.

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Pat [68] married to Derek [84] for 38 years; husband dx PDD/LBD 2005, probably began 2002 or earlier; late stage and in a SNF as of January 2011. Hospitalized 11/2/2013 and discharged to home Hospice. Passed away at home on 11/9/2013.


Fri Sep 02, 2011 3:49 pm
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Joined: Mon Feb 14, 2011 10:22 pm
Posts: 190
Location: Portland, Or
Post Re: Lewy and Phooey, or the Squirrel and the Crab
Laurel-the description of your dad brought tears to my eyes especially the "premature feminist", he sounds like a very sweet man. I too, am very fortunate that my mother has kept her sweet nature so far and I hope she stays this way. This disease is just so devastating to families!
Thanks Lynn for the pipe analogy and Kate's electrical grid, I'm sure that will help me explain it to relatives this Sunday at our picnic.
I'm probably going to be in the doghouse with the ANP at the doctor's office because she sent us to the lab at the hospital for an INR and we waited 45 minutes and left.
Mom hadn't eaten for 5 hours and we had been at the hospital/clinic all morning and I had just had it! The antibiotic she was on wasn't working so we're starting a new one today and I have a call in to the anti-coag clinic to move her appt up from next Friday to Tues/Wed. I want to have all of it in place before I call the nurse back to let her know not to look for the results this afternoon. :oops:
Sometimes you just have to say enough is enough! I worked in the medical field for 30 years
and I know that mom will be fine having the test in a couple of days.
Again, I am so glad that you all "get it" and so thankful for the boards.
Ellen

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Ellen 59, caregiver for mom Marion 81,dx LBD Feb 2011


Fri Sep 02, 2011 4:15 pm
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Joined: Fri Jan 15, 2010 9:33 pm
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Location: Vermont
Post Re: Lewy and Phooey, or the Squirrel and the Crab
My aunt who is the early stages of some form of dementia has fallen several times in the last month or so, and the falls are getting more frequent. One of her daughters took her to the ER after the last fall to make sure she hadn't broken anything and hoping they'd do an MRI to see if she'd had a stroke. They waited over 12 hours and never were seen!!! Luckily my aunt is in pretty good physical shape, but what is going on that people are waiting many, many hours to be seen? They got up at left at almost midnight. :(

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Lynn, daughter of 89 year old dad dx with possiblity of LBD, CBD, PSP, FTD, ALS, Vascular Dementia, AD, etc., died Nov. 30, 2010 after living in ALF for 18 months.


Fri Sep 02, 2011 8:13 pm
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Joined: Thu Apr 21, 2011 9:07 pm
Posts: 247
Post Re: Lewy and Phooey, or the Squirrel and the Crab
That's really sad, Lynn, about your aunt, and Ellen's mom, and the delays and long waits at the hospital. I'd probably have gotten up and left, too...

As Lynn's and Ellen's examples suggest, the medical care system is under increasing stress, with higher demand and ever more paperwork, and shorter staffing to deal with all of this. Our ER definitely shows the effects of the increasing number of people without health insurance, for whom we wind up as the provider of last resort - and first resort, and too often, only resort. Though I do know of one case where a woman couldn't get any cancer care coverage at all, and went over to the local big box store and threw a rock through a window, and sat down on the curb and waited to be arrested, so maybe she'd have a chance of getting care in jail. Good luck on that one - the county is also broke and, last I heard, owed the hospital well over $100 million for health care bills.

So it has been critical to be a positive advocate. It helps to be on the inside but it takes a lot of time and energy, even with knowledge and connections. I have a sinking feeling that it will get worse, not better. Trying right now to give my dad more of a break, and to help him feel less helpless and frustrated.

A happy Labor Day weekend to all you hard-working caregivers, and may your unpaid but heroic endeavors be appreciated and bear a harvest of kindness in return -
Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Fri Sep 02, 2011 11:47 pm
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Joined: Sun Oct 17, 2010 2:06 am
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Post Re: Lewy and Phooey, or the Squirrel and the Crab
Foe future reference: my hb became non responsive one morning, and I couldn't get him up and into the car to see the dr. Called 911, they took him right past all the waiting, got him into the system, probably cut off hours of wait time. The paramedics told me most hospitals take ambulance cases first as a matter of course.
Oh yes, then there was the er doc who, when I told him my hb had lbd, asked me how I knew, had he been biopsied?!!! I called him on that piece of nonsense and he became much more helpful, think he was just trying a shortcut to see what he was really dealing with.
So stick to your guns, know your rights, and figure out how to navigate the increasingly bureaucratic maze thrown up by our healthcare system! We're all pretty amazing folks, we should pat ourselves on the back from time to time:)


Wed Sep 07, 2011 2:55 pm
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Joined: Sun Oct 17, 2010 2:06 am
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Post Re: Lewy and Phooey, or the Squirrel and the Crab
Ps, he had pneumonia, spent time in icu, finally discharged three days later, doing fine. But it was a big setback, cognitively.


Wed Sep 07, 2011 2:57 pm
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Joined: Tue Dec 29, 2009 2:28 pm
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Location: Minnesota
Post Re: Lewy and Phooey, or the Squirrel and the Crab
I know this is probably counterproductive for ER staff and kind of cheating, but where my mother is concerned I'll do whatever I have to in order to get her help. This didn't always work, but it also did work about half of the time...

When we were still taking Mom to ERs, I watched and learned as many of the words to use and circumstances to indicate that got some people priority in the ER pecking order. Yes, coming in via ambulance sometimes counts, but if you aren't admitted you usually end up paying for the ride yourself. Another thing that moves you up in priority is infectious disease. Anything that could harm others in the waiting room gets you out of the waiting room. You don't have to actually say that you have an infectious disease, just name symptoms that sound like you have one. Also, Ok don't do this unless you have to, disturbed people get placed in rooms quickly - restraints, too, possibly, but you are out of the waiting room. One truly honest thing I told ER staff that was truly a concern was that Mom was incontinent and had soiled herself thoroughly. I noted for them that the public restroom was no place to try to clean her up and they moved us to a room rather quickly. BUT, just because you get a room doesn't mean you see a doctor soon. We've spent entire days and into the night in ER treatment rooms just waiting for help. And that is where I become annoying, chasing down staff for assistance, supplies (sometimes), even food and water when Mom had been there for 8 hours plus without anything to eat or drink (OK, we brought her Coke, but no food, as it was frowned upon).

Thankfully, I don't expect to have to go through that again. Mom is now on palliative care and we have a DNR, DNI (intubate), DNH (hospitalize) and any other "do not" order form that is legal here. With luck, she'll never see another ER.

Also, a lot depends on the hospital you use. There's nothing saying you have to use the same one all of the time and there is no requirement that your primary care doc has privileges there. While in the hospital, you're under the care of the attending physician, anyway, and only see your doc briefly during the occasional rounds they do. There is nothing wrong with trying out a new ER, or even just sitting in one to observe and make choices.

About that ambulance thing. I went into the ER once via ambulance. It was actually rather embarrassing because all I had was a textbook broken ankle. But I fell at work, with a fire station across the street, at a University that has its own police, and very responsive county paramedics. Really. All I needed was for someone to drive me to the clinic a few blocks away or to the ER in approximately the same location. Instead I had three separate teams of emergency responders and some paramedics who really wanted me to use their ambulance so that they could avoid another stabbing. Now I know where I want to be for my next "medical emergency!" But once in the ER, where they could see that my injury was a no brainer, I ended up on a gurney from about 3pm to past midnight. I sent my family home long before I was told that I couldn't be seen that evening and they were admitting me - just because they no longer had a doctor who could do anything with my textbook broken ankle. Gee, I wondered if I could have done more with a textbook and some gauze and plaster. So I spent the night in a room with a screamer and was told the next day that I needed to go home until the swelling went down. That's the attention the ambulance got me. (It was a full moon and ERs all over the city were treating real, desperate, trauma cases, so it was understandable and really, I didn't need an ambulance - just a ride.)

So, with all that, best of luck to everyone in the ER waiting room.

Kate

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Kate [i](Cared for Mom for years before anyone else noticed the symptoms, but the last year of her life was rough and we needed to place her in an SNF, where she passed in February 2012)[/i]


Wed Sep 07, 2011 11:42 pm
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Post Re: Lewy and Phooey, or the Squirrel and the Crab
Hi Kate,

I'll vouch for the efficacy of incontinence to speed up admissions. Last year my mom had an acute episode of intestinal varices, so we carted her over to the ER. While someone was asking us what the problem was, prior to checking her in, she fainted, slid off the chair onto the floor, and wound up lying in a pretty revolting pool of effluvia. (She opened her eyes at this point and said "Oh, I feel so much better now, lying down!") In less than a minute they had her on a gurney, a cleaning person in the room, large quantities of bleach and cleaning fluid sloshing around, and within a couple more minutes she was gowned and hooked up to an IV. Since we had access to the EMR with blood type, she was getting blood shortly after, and transferred to the main hospital as soon as she was stable.

And if you have an accident at work, at least some employers will do their best to get you treated as fast as possible, presumably lest you sue them. I had a broken wrist at work some years ago at another med center, and went to employee health first. They sent me for x-rays, then to the ER to have it cast. Minor break, but when the ER finally deduced that I was a faculty member and quit hassling me for a "referring doctor", the magic carpet whisked me away for instant care, and to see a hand specialist a couple of days later. Then the VP wanted to make sure I was ok. I used the opportunity to put in a pitch for better ice removal at the emergency exit (we weren't supposed to use it but everyone did anyway, and if they ever had to take the patients out that door, they were looking at a zillion hip fractures.) It did work - the ice was gone and stayed gone. The really odd thing was that I got a completely unsolicited small check about 6 wks later for workman's comp. Evidently the state required reporting of work-related injuries leading to ER or hospitalization, setting in motion a chain of events without need for the injured person to act. There was a standard rate for an uncomplicated wrist fracture. It was not a big problem for me (left wrist, right-handed person, desk job, so inconvenient but not catastrophic) but I realized it could make a huge difference for many people, and it made me grateful that the system could work so smoothly, at least in a clear-cut case.

Goodness knows, we have had our share of the other kind - such as a long wait for shoulder x-rays in the ER in TX, after my daughter had a fall from a horse. She turned out fine, but good grief, a small TX town can sure throw up some colorful characters on Saturday night in the ER.

Laurel

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Laurel - mother (97) diagnosed April, 2011, with LBD; died May, 2014.


Thu Sep 08, 2011 9:05 pm
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