Saturday, February 28, 2009
The first is March 8th at the State Capitol in Atlanta "Alzheimer's Day". Details are at http://www.alzheimers.org/. (click on Georgia)
The second is here: http://www.alz.org/publicpolicyforum/09/overview.asp
It is the Alzheimer's Public Policy Forum held in Washington DC, and it's a chance for AD paitients from all Congessional Districts to tell their stories. That's March 23-25th.
As far as news with me, there is none except getting the details of my 72 Hour EEG next Tuesday.
Supposed to begin to snow here tomorrow so I guess I'll "hole up" in "The Hell-Hole" (my apartment) and do the same old shit: nothing. Just disconnect the phone and read, I guess.
Have a great Sunday and week coming up.
Wednesday, February 25, 2009
Simply put, we engage ourselves with the person, not just the ailment. From the moment he or she walks in until the time they leave, they are our guest.
As part of the "interaction" with the patient, we are asked to touch them briefly to establish trust and empathy, and although I know it's appreciated by all, I can feel the appreciation more by our more senior patients. Those are the ones in whose hands I place my own, and we establish our interaction in this way.
I am always very careful to direct my questions to my patient until such time I find out that he or she may not be able to answer for themselves, but the hand remains, and 99% of the time my own hand is grasped tightly, and my patient's eyes "speak" to me. They are saying, "Be kind to me, heal me but don't hurt me", and I do my best to comply.
Why am I telling you this?
Hell, I don't know. Maybe because I think I, myself might be holding someone's hand very tightly one day - not able to speak - except with my eyes, and maybe - just maybe - my eyes will look into that other person's, and they'll be able to understand that I'm afraid and need some comfort.
It's good to think about those things. It keeps you humble, and it makes you pay attention to people and lets you gauge their level of empathy.
Having been in the medical field for most of my adult years, I've run the gamut of emotions about pain and death. I've joked about it (it's called "gallows humor"), I've cried when we lost a little one or someone who has been fighting one of the neuro-muscular or lung diseases, I've been 'sobered' when we couldn't save someone in their 30's who'd just had a heart attack, and I have gone to funerals of some of my patients to whom I had gotten really close.
No matter what people in the health care field might tell you about being able to "shake it off", it all leaves a scar. You may not be able to see it, but every now and then, those of us who work in life or death situations will just get quiet in some corner somewhere and think to ourselves that all life is finite, and that includes us as well.
Now that I know what I know, I'm not as haughty or arrogant, and I pay a lot more attention.
Does that mean I've lived a hypocritical life?
Monday, February 23, 2009
In today's blog I wanted to share with you the site called www.infomercialwatch.org which is also run by Stephen Barrett, MD.
The reason I am linking you to the new site is because I almost spent 60 bucks on a product called "Dual Action Cleanse", which is supposed to clean out one's colon and detoxify one's system. They were going to send me a "free trial" (just pay shipping and handling) and from that point on I need do nothing - they'd just charge my credit card for every monthly shipment. I checked out the site and did a little more research, and found that "opting out" isn't always successful, and that this guy has been in trouble with the FDA before.
So be careful. In today's lagging economy, the scam artists are going to work even harder to part you from your money.
Remember that lady in Stairway to Heaven?
Here's a version of that song I bet some of you haven't heard yet.......
Have a great week, and thanks for stopping by!
PS: Thanks to Skericheri for being number 14 and getting us off the unlucky 13! And thanks to RealityChuck of The SDMB for The Beatnix link!
Saturday, February 21, 2009
The article is here: http://www.medicalnewstoday.com/articles/139793.php
Those of us familiar with the cause of AD (the plaque in the brain) keep hoping someone somewhere will "get lucky" and turn this thing around, but you know what?
It is a bit disheartening when one picks up a newspaper and reads one more story what "might work". I hope someone's keeping up with what isn't working and I suppose we can all breathe a sigh of relief that at least these men and women aren't quacks, right?
You know what else I've been thinking?
What if they made a drug which could make our brain function even better than before?
Remember the first part of The Six Million Dollar Man?
"We can make him better than he was! We have the technology!"
We'd have computer-like memories, Dudes and Dudettes! We could ace any test. We could be court reporters without stenography equipment. We could win the friggin' lottery!
Well, okay. I haven't figured out how we could win the lottery yet, but it's got something to do with probabilities and chances and stuff!
Enjoy your weekend and be safe!
Tuesday, February 17, 2009
This morning, one of my co-workers (whom I rarely see - because we work on different days) asked me "Well, Bill, have you been officially diagnosed with Alzheimer's?"
Y'all, I know she didn't mean anything, okay, and I knew she was being concerned, but I'm afraid I put on my "professor's hat" and gave her a lecture, which began with, "So many people seem to be waiting for me to start drooling or not recognize them, D, but it just doesn't work like that! It develops in stages and right now I'm at the stage where I have short-term memory lapses only, and I know I look and act "normal" to you, but if you were to spend 24 hours with me, and watch me as I look for something I laid down just 30 seconds ago, fumble for a word, or put shit in the fritch that doesn't go there, you might see that this is not the Bill you knew last year!"
"Yeah, I know, but......."
"Wait!, Let me finish, okay? The way this whole thing works is that everything else that it could be - strokes, a tumor, whatever, is eliminated first, and then comes memory testing after which I am put into a classification as compared with the memory scores of people in the rest of the nation. So until that happens, I am being treated for Early Onset Alzheimer Disease, because not to do so would really put me behing the 8 ball if and when I am diagnosed. This way, I'm a little bit "ahead of the game".
When I got finished, you could have heard a pin drop and I knew I'd gone too far, so I apologized and tried to explain how frustrating this all is is for me. I want people to ask me stuff, but I want them to also realize that the fun-loving, joking, happy-go-lucky Bill is fading and he's scared...... and frustrated. There is no friggin' punchline! This is not a joke!
I hate being like this! And I hate having to repeat myself and I hate like hell not being able to say, "Okay, joke's over. I was just messin' with y'all's head!"
So I have a call in to my Georgia Chapter of The Alzheimer's Assocation to see if there's a script I can use, so I don't come off sounding like an asshole when I try to explain all of this crap I am going through.
This morning before I left work, I was wondering if our organization has someone to lobby for us in Washingto D.C. and if so, could I interview this person and add it to the blog? (My "reporter persona" is apparently still alive and well!)
So I went to Google and put in "Alzheimer's Lobby" and came up with this from an article in TIME magazine entitled "Confessions of a Lobbyist":
Here's a quote and I will also link you to the article itself:
"When we walked into the Capitol, we were not the only ones lobbying. Members of the Alzheimer's Association, which had also been holding seminars at the Grand Hyatt, were walking around with Alzheimer's sashes around their chests, as if they had entered some pageant years ago and had forgotten to take them off."
Ummmm? Asshole? Are you aware that you, yourself could be diagnosed with the disease you seem to be "satirizing"?
This was written last year, not when we first learned that AD is a form of dementia, but last year when we were already quite well aware of how many people are diagnosed every day.
Okay, maybe I'm being too "touchy". (Excuuuuuuse me!!!!!!!!!!! :))
So here's the link: http://www.time.com/time/magazine/article/0,9171,1808625,00.html
Read it yourself, see what you think and let me know if I'm overreacting, okay?
Need some help?
That's it for now!
Monday, February 16, 2009
This is going to be one of those "functioning on the job" blog entries......
Because I am the only respiratory therapist on my shift (7p-7a), it means I cover the entire hospital (Med-Surg, ICU, and ER), so I don't have much of an opportunity to get to know my patients. In fact it is more common for them to recognize me (in and out of the hospital).
For that reason also, I don't get as emotionally "attached" as, say, a nurse who works with a patient all shift - all week or longer.
Is that a good thing?
Well, sometimes yes - sometimes no.
A lady I always referred to as my "favorite patient" died recently at the age of 99. She was very special to me and it happened during my weekdays off.
I "dealt" with it the night I came back to work, but she occupied my mind the entire shift, and I do still think about her and her stories of the early days of NASA where she worked till retirement at 75.
Had she died on my watch, I would have needed a little time to myself to grieve, but as it turned out, I didn't know until her obituary appeared in the newspaper and someone at work showed it to me.
So - mixed emotions. Since she was buried in Alabama, I didn't even get to pay my last respects during "visitation" (something I very rarely do, because one never knows how the family "feels" about a medical professional intruding on "their" time).
"So Bill, do you ever cry when you lose a patient?"
Oh yes. Especially if that patient is an infant or pre-teen or teen. (Recently we had a 14 year-old who hanged herself, and that one was very hard for all of us to take).
So being "clinically detached" can be a good or bad thing, depending on the circumstances. It certainly can keep you going on a night when the ER is being slammed, and then you just "think about it later". Call it a "defense/avoidance mechanism".
But........ (you were waiting for that "but" right?) lately I have been paying very close attention to a certain type of patient.
When I know that the patient may have Alzheimer-Related Dementia, I become very observant, and it isn't unusual for me to do my own "neuro-check", which is nothing but asking a question to see if the appropriate response is given.
For example, I may ask my patient if he's ever used an inhaler, or ever had an EKG, and listen for the answer. If I get a "yes" I ask "what kind of inhaler", or "when would have been your last EKG?" If I get a "no" and the patient is obviously chronic obstructive or cardiac, then I know some thing's up, and I kinda gauge my own symptoms against that.
Hell, I know it's not scientific, or any kind of an indicator of how I'm doing, or how I'm going to turn out, but there you go - I still do it, because I'm curious (not yellow;)).
So that makes me wonder about other EOAD people, and do y'all do the same thing (not necessarily in the same setting as mine), and do you find that it's beneficial or does it do more harm than good. In other words, do you try not to think about it at all?
An update: Re: The non-payment of my August MRI...... I contacted the imaging company and they gave me the pre-certification number which clearly shows my insurance company is liable for the expense, so now I'm just going to watch with great interest as they pay my claim.
Y'all have a great week and thanks for reading!
Sunday, February 15, 2009
The story line deals with a white televangelist who's a bit short on faith, has a heart attack and gets the heart of a black preacher.
Here's the website: http://www.hegotsoul.com/.
The reason I am excited about this project is because it was one I was involved in, on a small scale:
1. They needed some help with authenticity filming cardio-pulmonary resuscitation and since they were filming right outside my office, guess who just had to stick his nose in and tell them what they were doing wrong? Right!
2. And I have a small walk-on part as "Death" as the stretcher passes by me. (I had on black scrubs), another of my colleagues (also hospital staff) was dressed all in white, so she represented "Life".
Because I as "Death" walked into my office, it represented a lack of interest in this guy's soul, and because "Life" walked by on his right side, we decided that this would mean it wasn't "his time" yet and he'd survive the transplant.
It's a very sweet story and I hope you get to see it sometime. The film premieres Saturday, February 21st, 2009 in Atlanta, and hopefully soon right here in Dallas Georgia at our newly refurbished theater to benefit my favorite charity, The Paulding Humane Society.
Since they filmed in our community, they wanted to "give back", and so I suggested a showing of the film with ticket sales to benefit our animal shelter and humane society.
Things like this always "re-charge my batteries", as it were and I am very proud of these kids and what they created.
The film has already won one award in Hawaii and I hope it's on its way to win many more!
I guess there's a few grey cells still left in this ol' brain of mine, huh?
Enjoy your Sunday and thanks for stopping by!
Saturday, February 14, 2009
Wednesday, February 11, 2009
I am a very "active" sleeper anyway, and because I was afraid of pulling something loose, I stayed awake till almost 4 this morning, whatever sleep I did get was due to exhaustion.
Other than these headaches I have been getting since the lumbar puncture, I haven't had any "episodes" to push the red button for.
I hate not being able to take a shower, and have been "sponge-bathing" myself.
My head itches because I cannot wash my hair, and I swear it feels like there are fleas up there making themselves a home! :)
Speaking of itching (and a little off-topic), why is it that when guys don't know the answer to a question, we scratch our heads????? I have never seen a woman doing this, just us fellas. Weird, huh?
Tomorrow I intend to wrap up my little series of my responses to questions asked of EOAD patients at the 2008 Town Hall meetings put on by the Alzheimer's organization. I still want to do something in-depth about Alzheimer's In The Workplace, but don't know exactly where to go for statistics and stuff.
Thank you for continuing to read my blog. I hope it has been of some help.
See you tomorrow!
Tuesday, February 10, 2009
Just got back from the neuro-guy's office where I got "wired". I have a diary I'm supposed to write stuff down in and a red button I'm supposed to push when there's a symptom. Can't bathe, can't ride my bike or do anything rhythmic like play my guitars or masturbate. (JOKE!)
I am not a happy camper, okay? Can you tell?
Thanks and I'll add more later.
Monday, February 9, 2009
Response: "I am scared. I don't know how long I will be able to work..... what a burden will I be?"
*Snort* (Sarcastic laugh): Well doesn't that one fit me to a "T"" ?
When we first began thinking along those lines, well , of course I needed to tell my boss!
I am considered a "First Responder", and I better know what to do and when, right!?
So far it hasn't been a problem, but "little things" have begun rearing their ugly heads:
1. ( A "little thing") Our ER has 16 sliding glass doors to each cubicle.
Friday night I was having a lot of difficulty opening room 9.
Try as I might I could not get that sumbitch door to open up!
I very loudly mentioned this to the ER nursing staff, one of whom told me I was trying to slide open the wrong side.
2. Not paying attention to my order sheet, and almost did a procedure on the wrong patient.
3. My co-workers are beginning to "make allowances" for me, and are "taking up the slack" when they do not need to.
It isn't just a few things, it's a few things all the time, and it's scaring me.
Tomorrow is the time for the 72-hour EEG, and I am scared shit-less.
It will be the beginning of whatever.....
Wish I could just lie down and pull the world up over my head.
Saturday, February 7, 2009
I am now very apprehensive about my 72 hour EEG coming up on Tuesday of next week.
Not because of the procedure, but because it might not be covered by my insurance, and here's why I wrote that:
Since August of last year, when I had my MRI done, I have had 3 claims turned down by my insurance company because they say that the provider is not approved under my insurance plan.
But here's the kicker: The company which did my EEG is the same company which did the MRI, and that claim was approved!
When I was called about the EEG I was told I had been "pre-certified" which I thought they had also done with the MRI.
What's the difference in the 2 claims?
Who the hell knows?
What I do know is this: If I had been told I wasn't approved to have the MRI done, it would not have been done, because that would have been an out-of pocket expense I wouldn't have wanted to incur.
So what's the plan, "Stan"?
I'm calling the imaging company on Monday, (a national company which shall remain un-named until such time as I determine who is at fault, my insurance company (Humana) or the imaging people), and I'm talking to the billing department before I go for the EEG.
I told you that to ask the following: How many of us being treated for Alzheimer-related dementia have abandoned treatment because of mismanagement of claims and harrassing calls from collection agencies, and more importantly, who is our advocate in cases such as these?
Tuesday, February 3, 2009
Kris Bakowski was one of the attendees of this event and sent me a summary report which you can read at www.alz.org. I strongly encourage you to do so - it has a wealth of information from patients and caregivers, and it is very important that we learn as much as possible because it's not going to go away any time soon.
Response: " My diagnosis took eight months. I know people for whom it took two or three years......-- you name it and I went through it"
I began my testing last October, and I have lost track of the number of times I have asked myself, "Well? Do I have this stuff or don't I?" The not knowing is very tough for me. I need a "starting place"!
Next week will be the third test for EOAD: The 72-hour EEG and I am hoping (what am I hoping?) that within that time frame something will spike (or not spike) to put an end to all the supposition. It's not only the "not knowing", it's the expense - both financial and personal of "walking around in the dark" with this shit hanging over my head.
Reading this, what does it sound like to you? Am I in denial or am I in "acceptance"?
How about am I in "tired"?
My counsellor (Mr. "I'm OK, You're OK") tells me to "think positive" and don't "waller" (sp) in it!"
Okay! I'm all for the "non-wallering" and in keeping with that frame of mind, I'm going to exercise a bit more and keep myself moving. I want to do another cross-country bike ride and want to run the Atlanta Marathon at least once more before leaving this "mortal coil". so I guess I'd better get my ass in gear, as it were.
So my response to the above response would be "The Columbia Record Club Response".
Me: Well, the "CRC" response is like sending off for those 10 "free" cd's and putting them out of your mind while waiting for them to get here, and one day..... well.... they'll be here and they'll either be all you hoped they'd be, or they won't, but at least they'll BE HERE, right? :)
In other "Bill News", last Thursday I had the mother of all panic attacks, and I thought [Fred Sanford]"This is the BIG one, 'Lizbeth" [/Fred Sanford]! I absolutely thought I was dying and was just waiting for my heart to stop beating. I paced from room to room with Bert (my cat) alternately trying to follow and hide from his suddenly maniacal Dad who just could NOT settle down!
Call an ambulance?
Yeah, right! What, they're gonna haul my ass to my own ER? I. Do. Not. Think. So.!
What I finally wound up doing was getting on the computer and e-mail the love of my life. Luckily she was awake and "talked" me down via Yahoo. Ah, the wonders of cyberspace.
What caused the attack? Aricept. Even at half a dose, it makes me not be able to swallow, which frightens me, which causes the tachycardia, which causes the panic attack, etc. etc. etc.......
But I'm still among the living. For now.
Thanks, as always, for following my blog and caring about me.