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Thursday, January 29, 2009

Voices Of Alzheimer's Disease II

This will be the second installment of my own responses to questions posed to a group of Early (Young) Onset Alzheimer patients during 4 live and one virtual town hall meetings in August of 2008.

Kris Bakowski was one of the attendees of this event and kindly sent along a summary report which you can read at http://www.alz.org/national/documents/report_townhall.pdf.

Response: "Healthcare professionals need to take us more seriously and most of all listen to our questions and concerns........treat us as if we were their mother, father, sister or brother."

Those of you following this blog know that I am in the healthcare field and so have a little more grasp of the terminology, signs and symptoms of AD, but I am also a patient, so much of what my neurologist is telling me I am hearing for the first time.

I do, however, have a very good relationship with Dr. K, and I am (guardedly) looking forward (Damn! That still doesn't sound right) to the 72-hour EEG and the Neuro-Psych testing so we can figure out where I am in the AD "scheme of things".

But see, I'm the exception, aren't I?

So what I would recommend to anyone being concerned about dementia either the patient or the patient's care-giver is inform yourself. PLEASE.

Read everything you can get a hold of on Alzheimer Disease! Learn the terminology and use it when you go for an exam!

Do not let yourself or your loved one get "flim-flammed" by some fast-moving physcian with dollar signs in his eyes, and stop him if he tries to dismiss you!

*Whew* ..... What I just now wrote up there, doesn't help, does it?

"Why doesn't it?", I can hear you asking me. And I reply:

"Because, dear friend, if you have to work that hard to get him to pay attention, then he wasn't worth a shit in the first place, was he?"

But please do educate yourself about Alzheimer Disease, because the odds are someone close to you has it or soon will, and you are going to want to know how to support that loved one, because with so many future diagnosed cases , there aren't going to be enough medical personnel to help.

That's my dour prediction if we don't "get a grip" and get it soon.

Thanks

Bill

Wednesday, January 28, 2009

Friends: Losing Touch And Finding Them Again

It shouldn't happen, but it does - you meet someone, you connect and discuss things you have in common, you establish a bond - and then for one reason or another you "delete" them with the touch of a key from your life!

During the "dark" period of my life, I somehow convinced myself that no one I knew gave a shit about me, so why keep them around?

This included people I met on the net and on various "bulletin boards" who became "virtual" but at the same time, "real" friends. Real enough so that I would remember their birthdays, at Christmas. etc. etc.

For some reason, they fell short of the "standards" I had set for them, and so......BYE!

Then came this.

And now I see that all the people I sent away are the people I need most in my life and now I want them back.

I am the worst kind of hypocrite there could ever be: Not one who uses words only, but one who also HURTS by rejecting, and I don't know how to deal with that - how to make that right.

So what to do?

I guess you sorta "filet" yourself - open yourself up - and say, "Okay, no more games. This is me, and I'm hurting. If you can find your way back to me, please come, because I need you", and hope for the best.

That's what happened tonight, on the phone. A friend I met on a drumming forum called me and we talked for over an hour. Kevin was one of the friends I had "discharged" fron my life, and he didn't even know what he had done wrong. As it turned out, he had done nothing wrong, he just innocently got caught up in the maelstrom that was my life at that time and got sent away. I am SORRY, Kevin.

Anyway, here I am, the worst kind of hypocrite who ever lived , who made his friends try to climb to meet his standards, and cast them aside when they didn't measure up - asking to be forgiven and expecting not to be.

I just wanted this to stand alone, but hell, I'm a musician and have suffered for my art and now it's your turn! :) (It's just a song, y'all, but it really does say something very important.)

Thanks for hanging with me, even though I don't deserve it.

As you listen to this, PLEASE just close your eyes and try NOT to think of Clint Eastwood in "Kelly's Heroes", okay? Just listen to the words........ and the drums, AND what I have been telling you in this entry. It comes from the heart, but I am a musician, so sometimes music says stuff, we just can't on our own.

http://www.youtube.com/watch?v=4XOEI0E7vKk
Bill

Saturday, January 24, 2009

From August 2008: Voices of Alzheimer's Disease

This is the report Kris sent me which I had planned to use as part of my series of entries on Alzheimer's In The Workplace, but every bit of it is so important that I'd like for you to read the whole thing in its entirety rather than me quoting from it, so here's the link: http://www.alz.org/national/documents/report_townhall.pdf

One thing that will shock you is what I alluded to in a previous blog entry: There are currently 5.2 million people in the US alone with Alzheimer's, and by mid-century that figure is expected to increase to 16 million. Those figures come from The Alzheimer's Association's report 2008 Alzheimer's Disease Facts and Figures. Half of those are people under the age of 65, diagnosed with "Early Onset" (soon to be called "Young Onset") Alzheimer's.

That's us "baby boomers", folks. What that means is that AD is no longer an "old person's" disease, and those of us in the work force right now with the AD diagnosis may not have enough in our retirement plans to see us through.

In the first paragraph I wrote that I didn't want to quote from the report verbatim, but what I would like to do is give you my impressions of some of the comments made at 4 "live" town hall meetings across the country and one "virtual" one. These comments were made by EOAD patients and they are very to the point.

Response: "......Some of them accused me of making a bad joke...... 'You can't have that - you're not that old.'"

Among those who know me well, I have the reputation as a bit of a joker, and so when I told one of my co-workers that my neurologist is treating me for Alzheimer's Related Dementia (the doctor's term), my friend looked at me expectantly as if to say "Okay, Bill let's have the punchline!", and when I didn't provide it, it was if he were in denial, not me.

When I encourage my colleagues to ask me questions about my symptoms, I can feel them pulling back, and it's like they don't want to know. These are people who work with me in our ER, but I suppose they're only human too.

Speaking of the ER (and the hospital in general - since I am the only respiratory therapist working the night shift), I am well aware of how precarious my situation is, and I am paying very close attention to my skills, since I am considered a "First Responder". I am very fortunate to have a boss who told me, "Just keep me in the loop, Bill", and that's what I'm doing. That is all I can do at this point.

Response: "I never had any problems driving; the police haven't stopped me even one time. The one thing that will bother me is when I can't drive......."

I, who have never had a chargeable accident in my life, am suddenly having fender benders in parking lots (2 in 2008). I cannot describe what happens, but I'm not paying attention, and I'm backing into cars, and once I let my scooter get away from me and hit another bike.

One thing which is scary is when I'm stopped and want to pull out into a street. The way will be clear, and out I go, but then I see a car behind me, and I will tell myself "I pulled out directly in front of that guy!"

To keep (sort of) on topic: I am lucky that I live only about 1.8 miles from my hospital, so if I had to, I could walk to work or ride my bicycle, but it's ironic when I think about it: If I were to get to that point, I'd probably not have a job.

There's more of my responses to my fellow EOAD patients to come, but I want to keep these little vignettes short, so as not to bore you, so let me just leave you with another link: Here's another guy who's not ready to throw in the towel.
http://www.cbsnews.com/stories/2008/03/08/eveningnews/main3919747.shtml

Enjoy your weekend!

Bill

Anger And Hurt

The "anger" is me, boys and girls.

The "hurt" is those around me who don't understand the anger and how much I hate myself for getting this shitty disease and I hate myself even more when I whine about it.

I try to "swallow it down", but sometimes I feel so helpless when I don't have the desire to do anything that used to give me pleasure that the people who are close to me bear the brunt of it all, and believe it is a personal attack, and while it may sound that way, it's the anger that comes with the 5 Stages of Grief which Elisabeth K├╝bler-Ross wrote about in her book On Death and Dying that is the problem.

I am on two kinds of anti-depressants along with the AD meds, and I have been on the anti-depressants before I even knew I may have EOAD. I got on them because I had anger issues before, yes, but I also got on them to save a relationship that was fast going down the drain. Unfortunately, it takes two to tango and person number two just didn't want to admit she was part of the problem, which caused (you guessed it) more anger.

So what now? Well, step #1 is admitting that along with the EOAD, I have anger issues and I am getting help with that, but I have no desire to pour more chemicals down my gullet. I just wish there were something that would make me feel "good" again.

A word about the anger itself: It's verbal. I just could never bring myself to hurt anyone physically. A lot of shouting and a lot of frustration at not being able to make those close to me understand

The one thing I am having trouble dealing with is the fact that I feel I can never again have a romantic relationship with any woman. The part of me that still cares about people would like to spare her that, but that in itself is problematic, because if there comes a time when I cannot take care of myself anymore, I had better get used to some kind of assisted living situation. And there is another reason for the anger: Just the not knowing.....

Okay, in other "Bill News", I have received an article from Kris Bakowski of Athens, Georgia, who also has Early Onset and has been diagnosed since age 46. The article deals with 4 "real-time" (and one "virtual") Town Hall meeting(s) of Alzheimer's patients, and is a part of the series I want to write on "Alzheimer's In The Workplace". I think you may be surprised at what I am finding out. For instance, there are many more of us being diagnosed under age 65 than I thought, and there will be more.

That's it for now, thanks Kris and thank you!

Bill

Thursday, January 22, 2009

Time For A Bloodpatch?

Ever since my lumbar puncture, I have periodically had a very stiff neck and a very bad headache, and so now I am wondering if something went wrong when my Neuro guy punctured my spine?

Today, I have to move my whole body to see side to side, and I am SOOOOO tired of this and the headaches.

I ALMOST had the desire to get on the bike and ride a few miles today, but not like this.

All I have strength for today is just nothing. I need some TLC. I need my Mel. I miss her.



Love Y'all

Thanks for bein' here.

Bill

Wednesday, January 21, 2009

Happy 7th Anniversary Tom & Gerry!



Please join me in wishing Tom and his Gerry a Happy Anniversary. Tom is my Alzheimer's Buddy whom I have yet to meet, but he has been a true friend every step of the way.

Thanks Tom and Gerry, and please pop a cork for me tonight!

Bill

Tuesday, January 20, 2009

God, It's Cold Out, Ain't It?

But I needed some fresh air so I took Anita (my Takamine Jasmine named after my mother) and we went out to the patio and learned this song



And while me and Patsy were singing it together, I could not help but think of how many others of us there are.

Gute Nacht

Bill

Weak Moments

There have been a lot of those lately, y'all.

I know the "catch phrase" for all of this is "You are not alone", but right now, except for Bert (my tom cat in my lap as I type) I pretty much am alone and it sucks, big time.

Just yesterday I met someone in the grocery store whose name I should have known - she looked familiar - but I just could not come up with the name of a nurse I work with (closely) every goddam weekend!

Still, every cloud has its silver lining, I suppose, and yesterday was a cloudy day that put me back in touch with two of my broadcasting friends: Rick Zeisig and Alan Duke, two of the most charismatic people you'd ever want to meet, and both of whom have made a big impact on my life.

I thank them both for getting back in touch with me.

This is for Rick and Alan and YOU:


Thanks for making me hang in there, Bro's and Sis's!

Bill

Monday, January 19, 2009

Alzheimer's In The Workplace: A Work In Progress

I had a very nice conversation on the phone today with Kris Bakowski, herself diagnosed with Early (Young) Onset Alzeheimer Disease at age 46, and also someone who had to fight to retain her job.

Although I am not at that point myself (and won't be until I get some kind of a "baseline" with the Neuro-Psych testing), I wanted to make contact with Kris because she has been an advocate for people who are still able to work, but may be getting the shaft because of something not their fault.

Kris' blog may be found here: http://www.creatingmemories.blogspot.com/

Please become familiar with Kris for any information or questions you may have because she's been dealing with this much longer than me, and she impresses me as a person who doesn't quit.

Thanks to Suzette with alz.org for connecting us and please stay tuned for more on Alzheimer's In The Workplace.

Thanks

Bill

Thursday, January 15, 2009

TIME OUT!!!!!!

Don't worry, it's not that kinda "time out"!

In yesterday's blog entry I wrote that as long as I keep busy with something, I tend not to dwell on what's going on with the dementia and stuff as much, and today my friend Peter (from Germany) e-mailed and reminded me that I said I was going to get him and his band (Time Out) some gigs for a short "tour" here in the Atlanta area, so I am working on that right now as well. I am fortunate that my son (Jason) is acquainted with some club owners and we're taking Time Out's DVD around to those clubs next week.

It will be a "Bill Craig Production" since I will be providing the plane tickets, food and accomodations, and basically "promoting" the "tour".

Here are a couple of youtube clips of Peter(bass & lead vocals), Hubert (1st lead guitar), Detlef (2nd lead and rhythm) and Guenter (drums) from a recent gig/concert in Rothenburg (my home town):





And that's my best friend Peter and his band - playing blues-rock mostly.....

Okay, in other news, this is my second day on the "MCT FUEL", which is emulcified medium chain triglycerides, and it has been in use mainly by body builders until recently, when Dr. Mary Newport, a neonatologist from St. Petersburg, FL, discovered another use for it, and here's a link to the clinical study she conducted with her husband, who also was diagnosed with Alzheimer Disease: http://forums.hsibaltimore.com/memory/12480-case-study-dr-mary-newport.html

As you can see, it seems to be helping Steve's memory, and from what I have been able to tell by using it myself for only two days (2 tablespoons twice daily), it's working on me as well! I can tell I am more "with it" mentally, and I also have a lot more energy.

Of course, at this point it's all very informal in that no claims are made about the MCT Fuel actually being a "cure" for AD, but I'm willing to try anything within reason.

My contact Suzette with the Alzheimer's Association will be helping with a series of articles I am planning for this blog called "Alzheimer Disease In The Workplace", so if there's anything anecdotal you'd like to share (confidentially, of course), please send me an e-mail at wolkenlaufer@yahoo.com, thanks!

Till next time!

Bill

Wednesday, January 14, 2009

72-Hour EEG Coming Up

Today I got a call from my neurologist's office, and I have been pre-certified by my insurance company to go ahead with a "72-Hour EEG" to monitor my brain waves and record any seizures or other abnormalities I may experience.

Basically, it involves your ol' pal "Billy-Bob" walking around with stuff taped to my head, off the back of my head (the wires) and into what looks like a fanny-pack worn around my waist, in which is the monitoring device which records all my brain-waves (such as they are! :))

I will be doing this during my off-days from the hospital, and if you're asking yourselves if I'm going to go out in public with all that shit hangin' off my head, well, the answer is NO. I may, however, let a friend make some pictures, just for shits and giggles, and I'll post them here for your viewing pleasure.

In other news, as I told my friend Tom on the phone (bless him, by the way, for his phone calls! I'm sure if it hadn't been for Tom T, I would already be in the booby hatch making baskets, so thanks Tommy, for helping me stay cool!) I had a really great day yesterday and today. Had a lot of fun running around at Home Depot buying shelving for some new computer speakers.

I don't know a damn thing about building supplies, but whenever I go in there, I just go nuts looking at all the stuff and sayin' words, like "cross-cut saw", "2 by 4", "dove-tail joint" and "measure twice, cut once", and making sure those cute sales girls hear me using those words.

By the way, I always thought a "dove-tail joint" was "wacky-tobacky" rolled up and spliced together in kind of a "Y", so two people could smoke it together and not have to pass it around. Guess that shows how much I know, right?

Anyway, a nice, happy couple of days with lots of errands to run and lots of assembling a new computer along with those speakers!

I told Tom I'm much happier when I'm doing something. It's when I have nothing to do that I get into trouble.

So I reckon I'll feel like these guys during those 72 hours. Might as well have some fun with it, right? :)



Thanks for coming by, and once again, please feel free to comment on what you read, okay? I don't talk to that many people about the dementia because I don't know a lot of people except for my patients, and what - I'm gonna tell them that I'm gettin' "milky in the filbert"?

I don't think so! ;)

Thanks

Bill

Tuesday, January 13, 2009

" I Want To Ride My Bicycle!"

Last Spring I did a benefit bicycle ride cross-country for the Humane Society's Spay, Neuter And Adopt program (details here: http://www.d2d4wetnoses.com/),and I'd like to do it again this year - only this time in September and instead of cross-country, I would like to do it "Cross-Georgia", but again, solo.

Last year, I got my own sponsors, did my own publicity and booked and paid for many of the rooms for me and my team, but given my situation with my dementia, I don't think I can handle this all on my own this year.

It is for this reason, that I'm throwing this out here on my blog, just in case some of you may have ideas, would like to volunteer, or volunteer someone. Michelle, who did the website I linked you to, will handle it again, but I need help in all other areas.

I need something to do, and cycling is something I have always enjoyed, and if I knew this could happen, well, then I wouldn't have these "episodes" like a few nights ago. I'd be too busy training and planning! :)

What do y'all think? I'm wide open to anything - even criticism - so let me have it.

And by the way, my local humane society has such few volunteers, they aren't going to be able to pitch in, so although this ride would benefit their efforts, I'd prefer they expended their energies in saving the animals' lives rather than running around on my behalf.

Thanks

Bill

Monday, January 12, 2009

THIS Is "Normal"?

So what normal thing did I do today to keep myself "focused"?

Cleaned house.

In 10 minute increments.

In an earlier blog entry, I mentioned that lately when I clean, it is more of a frenzy than an organized, "orderly" kinda of thing.

So what I did was this:

Get out of bed, clean for 10 minutes, then lie down for 15 minutes; clean for 10, down for 15, etc........

I lasted about two hours, and there's more to come tomorrow.

Unorthodox? Yes, but it works for me, and the place looks better than it does when I use the "Tasmanian Devil" approach.

And of course there was music!



Admittedly, I cannot use this approach with other tasks (10 minutes CPR, 15 minutes sleep. etc.), but I believe it's a good exercise because it allows me to plan the next task. In short, a major paradigm shift for the "German Boy" (the neighbors called me that when we first moved to the US, and I guess it kinda stuck in my mind).



Gute Nacht, Boys and Girls. ;)

Bill

Sunday, January 11, 2009

Doing Something "Normal"

From Oh God!: "Sometimes when you don't feel normal, doing a normal thing makes you feel normal. Here... start shaving." - George Burns

Well. obviously I cannot shave continuously, but I will strive to do some "normal" things during my next four days off.

Special note to my friend Helga in Australia: Glad you came through your surgery all right and that you'll soon be even better than ever - if that's possible!

Thanks for "hangin' with the German Boy" during my recent troubles and enjoy the song, Y'all. It's one of my favorites.



Bill

Saturday, January 10, 2009

Regrouping

Need a little time to gather myself together, y'all. Thanks for caring. Back soon.

Bill

Friday, January 9, 2009

Wednesday, January 7, 2009

Planned Series: "Alzheimer's In The Workplace"

Hey Boys and Girls

A very close friend of mine just lost his job because of his Alzheimer-Related Dementia, and it got me to wondering how many others of us this may be affecting, so in the next few weeks, you'll be seeing some articles relating to this, and I hope that if you have a loved one or know of someone who's been let go because of AD, you'll share it with me? Confidentially, of course.

As for myself, I am still able to work, but am noticing some "taking up of slack" by my co-workers. It isn't that I cannot do the work, it's just that we are abnormally busy in the hospital and ER right now, and, being the only therapist on from 7p-7a, there are times when I need to be in 2 places at the same time and I cannot always do that. It is appreciated, but it also makes me wonder if I am slowing down, and because I have no "baseline" that's kind of hard to determine.

Looking forward to hearing from you and thanks for following the blog - it helps to know that you're there - it really does.



And for you Oldies, here's the original: Oh! You do know about crankin' up the volume, right? :)



Bill

Bill

Monday, January 5, 2009

Stuttering Seems To Be Gone! :)

A bit of good news to share with y'all today: I seem to have stopped stuttering.

You know, I never really knew why it came back - I used to stutter as a child - and when I first began noticing it was a couple of months ago, and I have no idea if it was a progression of the AD, or a result of the Aricept which did not agree with me, and caused me to have dysphagia and terrible panic attacks, or if it just stopped on its own. I'm gonna blame it on the Aricept. (Or maybe I'll blame it on the Bossa Nova!) Just glad it's gone !

I cannot really tell you when it stopped, because I wasn't paying attention , but I suspect that when I was with Julian at Christmas, it had abated.


Here's some stuff off Web MD about stuttering and Alzheimer Disease: http://www.webmd.com/brain/tc/stuttering-symptoms

I would like to thank some friends who have joined the blog for clicking on the ads, and those are my fellow Beethoven Fans over at http://www.forum-lvbeethoven.com/Forum//index.php?15 . This is a forim dedicated to the great composer who is my personal favorite.

Also keeping tabs on "Where To Bud?" are the folks over at the Rick Steve's "Europe Through The Back Door" (http://www.ricksteves.com/home.htm) site. If it seems like I'm name-dropping, well, I am! These folks, along with all the other friends, have indicated an interest in me and Alzheimer Disease and I just wanted to thank them all for being here.

The other reason I'm doing it, is because I'm a bit of an "Attention-Whore".

But a "whore with a heart of gold", because I like it when y'all click on the ads that appear on the blog: it pays the site 2 cents for every click and I want that money to go to Alzheimer research and also to another of my causes: The Paulding Humane Society, to help with their medical fund.

Now, if you want to choose one or the other, that's fine. Just let me know in a comment, but if not, would it be okay to split the proceeds between the two very deserving organizations? Let me know either way, okay? Thanks!

Speaking of Alzheimer's, here's a link to 10 things to do to keep our minds sharp in 2009!
10 Tips for Keeping the Brain Sharp Into 2009

As always, thanks for reading and please let me know if you'd like me to address something special for you. This blog has been a great outlet for me, and I love writing it for y'all - so it's to my advantage to know what it takes to keep you reading!

Here's my favorite "stuttering song":

Special "Kudos" to the first person who can tell us (in the "Comments" section) the name of the next song indicated by the short introductory chords at the end of the song featured today!


Bill

Sunday, January 4, 2009

Neuro-Psychological Questionnaire Is Here

This is the one I have to fill out as part of the multi-stage examination at Wesley Woods Memory Disorders Clinic of Emory University.

The testing will involve 2 parts (maybe 3), the first being Cognitive Evaluation and Laboratory testing. They can have all the blood they want, but no way am I having another lumbar puncture. The one I had a couple of months ago, I am still experiencing a stiff neck and headache from, and I'm not going through that again.

Part Two involves Diagnosis and Treatment Recommendations, and this (I hope) will finally nail down how far along I am in my demented state of mind.

Many of the questions I have already covered in previous entries describing my symptoms, but one that was asked did make me pause and consider, and that was the one about hearing voices.

I do hear voices sometimes, but they are generally many people talking at once and are indecipherable or at times just one just calling my name very forcefully: "BILL!" and that's it. None of the voices have actually told me to hurt myself or someone else, and I believe that is because it is not in my nature to do that. I also do not believe that one can be hypnotized to act like a chicken if one does not do so on a daily basis and does so in order to provide "part of this nutritious breakfast", as they say in those dumb commercials.

Many of the questions I could not simply answer with a "yes" or "no", so I wrote "ask me about this one" to the side. I can already tell I am not going to be a very docile patient.

I will have my work cut out for me gathering my medical records from my PCP and local neurologist, listing all my meds, and just generally in my own words describing how I got to this point.

So that's an update on the upcoming testing. I'll be seeing my neuro guy before that because he's got to write me a scrip for my Namenda and Exelon.

I guess the question on every one's mind right now is, "Do you feel that these medicines are helping you, Bill?

You know, I can't honestly answer that? Maybe they're helping not to make things worse, but I am still having episodes of forgetfulness, forgetting simple words and losing things and thinking people are stealing from me.

We'll let the "jury" deliberate on that one, okay?

Here's a quote I found in a recent novel about Elizabethan England:

"LIFE'S but a walking SHADOW

a poor PLAYER

That struts & frets his hour

upon the STAGE

And then is heard no more!"

It's Shakespeare of course, from Macbeth and the character speaking is the prince himself, lamenting the death of Lady Macbeth and it expresses his views on the futility of life.

Do I feel this way?

Sometimes.

Thanks

Bill

Friday, January 2, 2009

Playing For Change



This really "stands" on its own without any words from me, except to say "thank you" to my friends Helga and Luke from Australia for sending it along.

Hope you enjoy it, and it makes you feel good. It's a tad long, but well worth watching the whole 5 minutes and 27 seconds.

Thanks

Bill