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Wednesday, December 31, 2008

Guess Who's 59 Today?



Yes, those ARE The Beatles singing Happy Birthday to me! (And to you, if it's yours!)

And here are my boys again...... Be sure to catch my main drummer man Ringo coolin' it!



Love you guys!

Bill

Monday, December 29, 2008

Right String? Wrong Yo-Yo?



Turn this one up a tad, too, okay?

Ever felt like that?

Like you're where you're supposed to be, but don't know what you're supposed to be doing there???

That's my life, and I feel like I am losing direction of it and the only thing that keeps me hanging on is that I think I am still of some use.

So here's my New Year's wish for you from me and Harry:

And Harry?

"Keep The Change" HA!

CIRCLE

Sunday, December 28, 2008

Some Exciting Alzheimer News!



(Turn it up a notch! :))



Take a look: * http://www.sciencedaily.com/releases/2008/12/081224215704

*Thanks to my friend Tuckerfan on SDMB for that link!

Okay - so we're still a ways away from curing this shitty disease, but it's heartening to know that research continues, right?

Some personal issues:

1. A couple of days ago, while entering my adress on an on-line order form, I forgot where I live (the address. Couldn't come up with it to save my life). So what did I do? I went to my auto-pay bank site where I knew I had my rent payment entered and found my street name "Foster Avenue". "Foster" being a part of the name of the apartment complex I live in: Foster Place Apartments.

Now, I have to pat myself on the back for knowing how to solve that little problem. See, I didn't just give up and ask my next door neighbor (who doesn't know about this), but I figured it out on my own!

2. Forgetting to take my meds. Tonight I forgot to put on my Exelon patch, and I can notice a difference already. I'm at work right now, and the shakiness of the Parkinson's is returning, albeit not continuously. Headache as well.

Solving THAT problem: Keeping some patches at work, Dummy!


3. Still forgetting names. Now to the point of forgetting the name of a person as I address them:

Me: "Uhhhhhhh...."

Person: "Cindy, Bill"

Me: "Oh, I knew that, Cindy! Just trying to formulate what I wanted to tell you."

Yeah, right.


Suzette from my local Alzheimer's organization told me in a recent phone conversation that the name "Early Onset Alzheimer Disease" may be undergoing a change to "YOUNG" Onset Alzheimer Disease" .

I believe this will be to make it easier to differentiate between "Early Stage" and "Early Onset" with the word "young" being a more appropriate term.

If I got this wrong, please feel free to correct me in a comment, Suzette, Thanks.

To watch a video and for information about the young onset programs

NOTE: This video is no longer available on that site, sorry y'all! , but here's a site which will explain the differences in terminology: http://www.bhoffcomp.com/coping/earlyon.html.

Again, my apologies for linking you to an outdated video!

Thats it for right now. Thanks for reading and don't forget us over at http://www.alz.org where you can access the message board and also make a donation toward Alzheimer research.



Bill

Friday, December 26, 2008

Christmas 2008







Well, what can I can I tell ya'?


As planned, Julian spent Sunday through Wednesday with me, and I had a great time spoiling him rotten even before we celebrated Christmas on Wednesday the 23rd. His grandmother (my ex) was also there, and we had fun with the film Polar Express which we stopped for gift exchanges at the point where Santa awarded the "first gift of Christmas" and then resumed.

Julian was the "gift-distributor" and we made some pictures - three of which are included here. I will post more at a later time.

Picture 1 is Bill and Julian playing a Christmas carol on the new kid-sized guitar he got from me and Santa.


Picture 2 is Julian with his stockie.


Picture 3 is "Bob". Bob is a knight metal sculpture I saw listed on Craig'sList and just had to have , so Bob is my present to myself.


One person was a no-show during this, my favorite time of year, but this was not totally unexpected since she took a hike (or should I say "left skid-marks?") when she found out about the Alzheimer Disease.


All in all, however, it was a good time with just a few instances of my mind taking a vacation. For instance, I had planned to go by the music store and pick up a DVD for Julian to take home to learn guitar, but I showed him a few chords, and plan to mail him the DVD later.

Let myself run out of medication, and had to chase down my PCP and have him call me some in.


Also, this is the month I have to renew my license plate and I have only 5 more days to do it before a penalty is assessed.

So, nothing really major, and nothing I need to beat myself up about.

I also heard from some friends on SDMB which was very nice of them to remember me at this time of year.

I hope y'all had a wonderful holiday and thank you as always for following the blog.

Bill



Sunday, December 21, 2008

Happy Holidays To ALL My Friends

Jacquie Lawson e-cards

Beginning today, I want to take a break from the blogging to spend time with my grandson Julian, who is coming to spend the first part of the week with me. You met Julian in a prior blog entry entitled "Julian William Craig Loves Me......." (Please scroll down in the list to see his picture once more)

Before I leave, I wanted to share with you how very much it has meant to me that y'all are following the blog and I hope it has been of some interest both with the personal insights into Alzheimer Disease and the information I have included.

I feel very fortunate indeed to have friends such as you, many whom I don't know personally, but through www.alz.org, e-mails, this blog, and the message board The Straight Dope.

Your words of encouragement and support have kept me strong and positive during what has been an interesting three months, to be sure. Yes, I was bitter, and yes I was in denial, but now I am at war with this disease and I very much plan to come out the victor if I can.

While I am away, I will be making notes to be included in a future blog sometime after the holidays, so you'll know how they went for me.

So many of you have used the phrase "You are not alone!", that even though this will be the first Christmas in a very long time that I am without someone special to share it with, I truly believe that I will be in your thoughts, as all of you will be in mine.

I wish for you and your loved ones a very Happy Holiday Season, and thank you once again for being there for me. Please click on the image above to see and enjoy a Christmas card from me and Bert, my cat!

Love

Bill

Beware Of Bogus Alzheimer Treatments

Yesterday I posted about stem cell research as a means of treating Alzheimer Disease.
Today, I thought to myself, "Well, they tried it with cancer and AIDS, why not with AD?"

http://health.usnews.com/articles/health/healthday/2008/12/03/bogus-stem-cell-therapies-sold-on-internet.html

Take a look at this: http://tampabay.com/news/aging/article879333.ece

Here you have a medical doctor treating her husband with coconut oil, and it seems to be working.
So how do you know what will work for you, if you have AD?

You don't. You put your faith in your neurologist and hope that what he prescribes you works long enough to tide you over until such time as a cure is found.

I myself am using the coconut oil, but I cannot say for sure that it is working for me, and that means it may not work for everyone. My friend Tom, who also has Early Onset says it works, and that's great for Tom, but because I am still having "episodes" I cannot yet make that claim.

Hell, even a placebo might work for someone's pyschologically disposed to thinking it will!

Here is an item from quackwatch: http://www.quackwatch.org/01QuackeryRelatedTopics/signs.html


So before spending thousands of dollars on something that may not work, do your "homework" and find out for yourself.

Remember Laetrile (from apricot pits)? as a cure for cancer?

If that is true why are we still sinking millions of dollars into research and why are sites like this one: http://www.laetrilesupply.com/selling it with this disclaimer:"Statements made on this website have not been evaluated by the Food and Drug Administration. Products are not intended to diagnose, treat, cure or prevent any disease......."


Be careful out there!

Enjoy your Sunday



Bill

Friday, December 19, 2008

What Was the Last Disease Cured?

Are you thinking polio in the late 1950's?

If so, you're wrong. It's smallpox, and it has the distinction of being the first human infectious disease completely eradicated (according to the World Health Organization in 1979 ). The last known case being in Somalia in 1977.

Polio, on the other hand, is still out there. As late as 2005, there were 105 confirmed cases discovered to have spread from Nigeria to the Sudan. This latest outbreak illustrates "the high risk posed to polio-free areas by the continuing epidemic in west and central Africa" (WER, 80 (1), 2005, p.2).

But that's not my point. I am not a conspiracy theorist by any means, but doesn't it seem a little odd to you that in a century where we can create stem cells, isolate someone's DNA and clone animals, we can't seem to find a cure for not only Alzheimer Disease, but muscular dystrophy, MS and cancer????

And doesn't it irritate you just a little bit when you read something like this: "Studies have shown that if you eat more X and less Y, you have a decreased risk of bonkus of the konkus?"

Well it irritates the Hell out of me, because it makes me think that if I only lived in a certain climate and ate only vegetables and yogurt and drank only water or red wine, I'd be more healthy now!

The fact is no one knows that for sure! You can make figures and demographics read any way you want them to, and yeah, they fill up copy space in newspapers and magazines, but by themselves, those little factoids aren't doing a damn thing to keep us healthier.

So where does that leave us?

Are we doing enough to hold our drug companies responsible in making their research more transparent, or are they just selling drugs to help the symptoms but do nothing for the disease itself?

I have written before that I'm the "new kid on the block" and heretofore I haven't had a dog in this hunt, but I do now, and I plan to inform myself even further about what's being done and what is being withheld and for what reasons.

To borrow a phrase from a popular tv show, I believe "The cure is out there".

Thanks for reading.

Bill

Thursday, December 18, 2008

Peter Pan Syndrome And Alzheimer Disease?

WHAT???
Okay, this is going to take some 'splainin': See, a long time ago, I was being seen by a counsellor who told me I had "Peter Pan Syndrome", which is a pop-psychological term for men who have never grown up, and which describes me, kinda.

My last significant other was many times heard to say, "You are such a baby!!!!!"
Me: "That's not a term of endearment, is it?"
Or: "That's so juvenile/childish!"
Me: "Well, I was someone's child, ya know!"

So that describes my behavior and my love for comic books, toy trains and computer games.
It also explains why I get along so well with the kids I see in our ER: I just seem to be able to talk to them on their level, I guess. It also explains why I become "sullen" when I don't get my way.

I hasten to add that PPS is not accepted medical terminology. It's just a coined phrase used to pigeonhole men like me (and I'm sure there are women who have this as well. What do we call that - "Wendy Syndrome"?

So what does that mean if I suddenly go apeshit, full-contact Alzheimer?

Probably that some poor soul's gonna have their hands full, unless I die from something else first.

I have never acted my age, never. First of all, I don't look 58, and secondly I don't want to act my age, even at the times I feel like I have to, and that's why things often don't work out for me.
At first glance, one may think, "Well, it's good that he thinks young!", but it's really not, because I can't seem to balance the adult and the child. I'm much more comfortable with the child which makes the "real" adult not be able to see anything except in blacks or whites.

So I'm seeing this counsellor now, and we talk about those things, and I am given books to read (more "pop-psychology") and exercises to do, and I am trying to be more adult when and where I need to be, but with this other (AD) shit going on, and not knowing from one day to the next if I'm going to screw up something, it's really tough dealing with.

And we really can't separate the two, can we? I mean, like some judicial sentence, they run concurrently, don't they?

So this is me, peeling back one more "layer" and letting y'all take a look at the whole Bill.

One week away from Christmas Eve! Got everything bought yet? I'm decorating the "Hell-Hole" for my grandson Julian's visit and I'm getting excited too. Just like a ........ little kid! :)

Thanks for the visit and enjoy the music!

Wednesday, December 17, 2008

The "Misunderstood" Snowball........

...... can turn into an avalanche in a heartbeat as it gathers momentum.

What began as an innocent "Devil's Advocate" question on The Straight Dope turned ugly very quickly last night.

Rather than write everything from my point of view, I prefer to link you to the debacle so that you may read for yourself what happened. This blog is about what's going on with me and I want it to reflect EVERYTHING in my life, "warts and all". Else, what's the point?

Here you go, and the shit hits the fan at post #12

http://boards.straightdope.com/sdmb/showthread.php?t=497840

What is so frightening about that whole episode is that I was so sure I was right that I would have defended my position with whatever it took.

What else is frightening is that this was an example of dementia, but it was seen as stupidity, and it saddens me that I apparently stepped on so many toes that my offer of letting another person evaluate the occurance (yes, she's a personal friend) was rejected, and it was suggested I ask for a suspension, so I agreed and suspended myself for an indefinite period of time.

The Straight Dope, just like alz.org has become a kind of lifeline for me, and I will miss it.

What's next? Me arguing that black is really white?

Scary shit, y'all.

:(




ADDENDUM
====================================================================================

My friend came by and we looked at what I had written, and I had indeed misunderstood the intent of the post, so I took myself off suspension and apologized and explained to my Doper friends what's going on with me, and many did not know.

All is now okay, but as I said earlier, I sure would have missed them.

B

Thanks

Bill

Tuesday, December 16, 2008

Bill On The Drums (With Pictures) And Other Stuff



Dear Friends,

As y'all know, I recently sat in on drums during a concert featuring my friend Peter's band Time-Out, and here are a couple of photographs from that night. That's Peter in the middle with the Santa cap; to his right is Hubert - 1st lead guitar; to Peter's left is Detlef - 2nd lead guitar; way in the back is yours truly whom you cannot see because the seat is so low, but Guenther is the drummer who turned his sticks over to me. I included a picture from earlier that day so you could see me drumming. The song being played is "Knockin' On Heaven's Door"



The "Other Stuff"

Suzette from the Atlanta chapter of the Alzheimer's Association called me back today (as I knew she would - first impressions are rarely wrong) and informed me that there is an organization called Professional Organizers who will come into one's home and/or office and re-arrange it to be more effective and less-cluttered.

I got in touch with Cheryl, of All Sorted Out, LLC in Marietta, Georgia who wrote me back and told me someone from the Georgia Chapter of the National Association of Professional Organizers would be in touch. Isn't that great?

Okay, this service is not subsidized by the State or Medicare/Medicaid, so it would be an "out of pocket" expense, but one well worth it if they tailor the re-arrangement of the living environment to the needs of the client.

I will let this be a sort of "pilot program" with my situation as "guinea pig", and I will relate my experience - warts and all - right here on my blog. So if you have a loved one (or are a loved one) with an AD diagnosis, please bookmark my site, and I will keep you updated every step of the way.

I just think this is important. We already are dealing with this friggin' disease, let's give ourselves a break and not have to worry about where things are and focus instead on getting better.

Tomorrow let's discuss "DENIAL", okay?

Thanks for being here for me, and all of us!

Bill

Monday, December 15, 2008

HELLLLP, Suzette!!!!!!!!! :)

As I wrote in the previous entry, I was going to contact the Alzheimer's Association in Atlanta today, but before I picked up the phone, they called me!

I spoke with Suzette before my lumbar puncture and she had told me at that time she would be back in touch, but what a great example of synchronicity that she called when I had a need!

We spoke about my problems with coping, focusing, stuttering and forgetting, and she listened and heard me! By that, I mean she was supportive and already way ahead of me in the problem-solving department.

I have worked with the public for a very long time and I can tell when someone is actually listening or when they're just waiting for their turn to talk with glazed over eyes. Even though we were on the phone I could tell Suzette was absorbing what she was hearing and that made me feel a whole lot better!

She knows about this blog and plans to check in from time to time, and she has told me she'd work on getting someone to maybe come over and help me reorganize the "Hell-Hole" (as I call my apartment. ;))

Tom called this evening and we talked for a while and compared notes, and as we spoke I realized that I have been independent for so long that it has been difficult for me to ask for help, and that is something that Suzette and Tom keep reinforcing: "If you need me, call me, ya big Dummy!"

So that's what I'm going to try to do.

Just gotta repeat, "You are not alone, you are not alone!" to myself.

Gonna leave you with a little video that features another one of my German friends, Stefan (2nd from the left when you see the 4 in a row) and his a capella group Disharmonie. They are very popular in Germany right now and have a great little cd called, oddly enough: Disharmonie.

I know you'll recognize the tune even though it is in German, and the story deals with a guy who wants to build a bird house, so he goes to the local building supply store, which, although they have hammers, do not have nails, and this frustrates Hashi (the lead singer) to the point where he gives up and decides, at the end of the song....... well you'll just have to watch to see what he decides to do!

Enjoy, and thanks for stopping by!



Bill

PS: Thanks again Suzette!

Not A Good Day, Y'all :(

This is my pal Bert, who always tries to help me have a GOOD day even though he drools like a toothless old man! Oh well, it's just "sugar" right?:


Matter of fact, it was a BAD day. Enjoy the video! It made me feel better! The animals always do that for me!








Woke up this afternoon, and started doing some stuff (the "Hell-Hole" is in a shambles, and that is highly unusual for me, because I never come back off vacation to a dirty apartment!)such as cleaning, picking up and washing.

Because these days my cleaning chores have no rhyme or reason, I tend to jump from one thing to another and basically just move things around a bit with some stuff finding its way into the trash can where it may not need to be.

Example: Recently I bought a new computer sound system which came with a $40 mail-in rebate as along as you send a copy of the invoice.

Tore the invoice off the side of the box, laid it aside (or so I thought) to take to work with me later and then 5 minutes later could not find it.

Guess where it was?

Right. In the trash.

What else made it a tough day was that I couldn't focus.

Example: Tried to log into one of my credit card accounts, but forgot the password. That isn't so bad in itself, because we all do that, right?

What made it difficult was making a new password and typing it in the second time for verification. I had to do it three times before I got it right, and here's why: as I was typing in the password, I didn't forget the word itself, but I forgot the order of the letters - a kind of "Did I just type that letter?" - kinda thing.

So what are ya gonna do about that, Bill?

I have said from the beginning of this blog that I plan to be proactive, and that has not changed.

Tomorrow (Monday) I plan to contact the closest Alzheimer's office and ask them for help, because I obviously need someone to help me set up my place differently so that things don't get lost and since I live alone, I believe it to be important for a sense of well-being to know where things are and where they should be put. I'll let you know how that works out! :)

Last but not least, I decided today was a "crisis" day and couldn't wait to get back to work, where I could relax (in my very high-stress job).

How's that for an oxymoron: "Going to work so I can relax"?

Have a great week, and be careful if you're driving in the holiday traffic!

Thanks

Bill

Sunday, December 14, 2008

Blog Changes and Other Stuff

Hey

Y'all may have noticed the "adult-oriented" material bar in the gateway of the blog? I had it there before, but took it down thinking that this site would be visited by only adults anyway, but the more I thought about it, I decided that since my language tends to be a tad "salty", I need to give y'all a choice on whether to "come in" or not because I sure wouldn't want to offend anyone.

So for now the bar is up, but if y'all feel like I don't need this "safeguard", then please let me know.

There's also a new little feature that lets you "rate" the blog entry. Since I have no one to edit my stuff but me, it would be a big help if y'all could check one of the attributes of the blog that appeals to you.

That ad box: Everytime it is clicked on by someone new GOOGLE pays the blogger 2 cents. That isn't a whole lot of money unless a whole lot of people click, but whatever comes in will go to support Alzheimer research, so if you could please pass the word, it would be great.

By the way, you can't just sit there and repeatedly click, because the server tracks your IP and the same person cannot click again and make it count for 2 cents - all you'd do is artificially inflate the hits on the site. As soon as I get a little more time, I'll develop some more ads, and maybe we can raise some money for AD.

At last check, 25 Straight Dopers have e-mailed Oprah about doing a show on AD, so I hope some of us will hear something soon, as my friends on www.alz.org and those who follow this blog have also sent e-mails. As soon as I hear something I will post it here.

Last but not least, I wanted you to know I value your input and advice as well, so if you hear of something that I have not written about, please let me know, because I want to broaden my horizons as much as I can as it relates to this disease. "Forewarned is forearmed", right?

Remember I'm a "new kid in town" and I need all the help I can get to try to beat this thing.

Thanks and I wish you all a pleasant and restful Sunday ('cept for my friends in New Zealand and Australia, whose Sunday is winding down and where it will be Monday soon!;) )

Bill

Saturday, December 13, 2008

My First Clinical Trial Questionnaire And Other Stuff

In a previous blog entry, I mentioned the organization called forMemory and that I had sent them an e-mail asking to participate in their study.

Well, that questionnaire was in yesterday's mail, so I brought it to work with me so I could fill it out, and I am glad that I have done so, because it revealed a few things about what is going on with me that I had not noticed before. I won't list all of them, but just the most imporatant ones.

The questionnaire is bracketed thusly: DO YOU HAVE THIS SYMPTOM? Y/N, APPROXIMATE YEAR NOTICED, IS THE SYMPTOM SEVERE ENOUGH TO INTERFERE WITH DAILY LIFE? Y/N.

One symptom I answered "yes" to (which we haven't discussed here) was "Getting lost", and I have for a very long time been "directionally challenged".

For example, if I make a right turn at the wrong time, I often cannot visualize what I need to do to get back on track, and if I make a wrong turn and don't realize it until much later, well then, it's even worse: I get disoriented, and start guessing and instead of turning around and going back, I get this "I can do this", syndrome and get even more lost.

"Poor or decreased judgement": Yes. I once almost ordered a white fireplace mantle, even though the rest of my furniture is oak. If SHE hadn't stopped me, I would have had to return the thing or look like an idjit when company came over. So I guess that's one thing she was good for! ;)

"Problems With Abstract Thinking": Oh HELL yes! I am often accused of having no common sense, even though my IQ is 146.

A prime example is that just tonight I read an account of one of the posters over on The Straight Dope, who, thinking he had forgotten to roll one of his car windows up because of the rain, went back downstairs, slipped and injured his ankle. (He had had a shitty day up to that point anyway, he says).

Well,my concern was for his ankle. It would never have occurred to me to ask him, "Well, was the window up or not????" Do you see what I mean? I have what some people call "tunnel vision".

The window was up, by the way.

"Auditory Hallucinations": Yes. Quite often, I think I hear someone calling me while in my apartment alone - awake. At other times I'm in the REM stage of sleep, and I hear someone (female voice) calling my name very emphatically:
"BILL!!!!", and I nearly jump out of my skin, and then I have to calm back down. It's only ever just my name, not sentences and stuff.

Okay, that's some of the questionnaire answers. Now I want to tell you about an "Anger Episode" at Atlanta's Hartsfield International Airport, and this is very unusual for the "German Boy", because I have hardly ever lost it like this.

==================================================================================

Okay, I'm down at the baggage claim section in the customs area, and our bags aren't on one but two carousels: 9 & 10. (These 2 numbers will be in my mind for a very long time. You'll see why in a moment).

Because we came from Germany, we have to claim our baggage twice: once in customs and again upstairs in the main terminal.

So the carousel starts up and the bags begin to arrive on #9.

Ten minutes later #10's bags start to roll out and all of a sudden now it's like I'm watching a damn tennis match looking for my bags, and I'm wondering how to solve this little problem when an idea hits me: "Maybe that airport employee at end of the carousel straightening the luggage will know when the last piece of luggage on 9 will cross!"

Does that make sense to you? The guys down on the flight line could put a blue-colored tag on the last bag and that lets the guy know that those are all the bags which will be on that carousel?

So, I walk over and as I start to ask that question "Excuse me, but is there a way that you know when the last bag comes out........"

"Carousel 9 and 10, Sir!, he interrupts. So I thought he hadn't heard me and I tried again.

This time I didn't even get to open my mouth: "9 and 10, Sir! 9 and 10!!!!"

Well, SHIT!

I walk back over to 9 and resume watching for my luggage, but the longer I stand there, the more pissed-off I get, so I decide to let him have it:

"Listen, I came over here and very nicely......."

"9 and 10, Sir, 9 and 10!"

"That's right", I say. "10 does come after 9", and it's great that you know your numbers, however (voice volume rising now) my question called for a yes or no answer, and you could have given me an answer and everything would have been fine, but no YOU HAD TO BE A DICK, AND ACT LIKE SOME KINDA COP BECAUSE THIS IS PROBABLY THE ONLY JOB YOUR SORRY ASS CAN GET!!!!!!!!!!!!!" And then I turned and walked back to wait for my bags.

Except for the noise of the bags dropping out of the chute and the carousel, you could have heard a pin drop.

What is significant about this is two-fold:

1. I was tired from the 10 hour flight with no sleep

2. I was behind on taking my AD meds

Since I am single and was travelling alone, you'll have to take my word for it, that this is highly unusual behavior for me, and had he come after me, I think I probably would be in jail now, because as far as I was concerned, it was clobberin' time.

What I don't know is if it was the lack of meds or the jet lag that caused this?

I'll check with my therapist and let y'all know.

Enjoy your weekend and thanks for looking in!

Bill

Wednesday, December 10, 2008

5 Pounds Of Shit In A 3 Pound Bag

Hey Y'all

First of all hanks to Maggie and Valerie for being part of my "Nightmare", it's good to have you both along for the um..... RIDE! :)

Secondly, I am not sure what's causing the dehydration, weakness and sore legs, but I hope it's not the German beer I've been consuming, because I would hate to have to give that up.

Not only have I been feeling weak, the headaches and neck-ache is back, and all I have wanted to do is lie as still in the bed as possible. Also been having night sweats so what's up widdat??????

One more night here in Germany and then in the morning at 11:55 is my flight back to Atlanta.

Haven't missed any meds, so I am not really sure what's going on but the words up there in the title are very descriptive of how I am feeling. It may be the cold and wet weather I have been walking around in, which are affecting me, who knows?

Anyway, looking forward to coming home seeing my grandson and getting the "Hell-Hole" (otherwise known as my apartment) ready for the holidays.

Hope everything across the "Big Pond" is going well, and I appreciate y'all visiting my blog and caring about me.

Still hoping to be the first "Alzheimer's Comedian". Before it's all said and done, I oughta have plenty of material! ;)

Thanks

Bill

Tuesday, December 9, 2008

A Visit - Not A GOOD Visit, But A Visit.......

....... with my uncle in East Germany. We met at a restaurant, spent about an hour together and then he had to be driven back home.

I was disappointed that I wasn't invited to his home, but I think I understand. I left by train an hour later and got back in at ten last night.

One more night in Rothenburg and then to Frankfurt for some last minute shopping and then home on Thursday.

Remember the Oprah e-mails suggesting she do a show on Early Onset Alzheimer's?

I have now enlisted the help of thousands of Straight Dope Members to send e-mails to her as well, so maybe she will take the hint.

The Straight Dope is a message board I have belonged to since 2000, and the people there are wonderful.

How'm I doing?

Okay I guess, but as I predicted, I am stutterign in German and also forgetting words thatz I should know.

My friend Peter says the forgetting of words isn't too noticeable, because I do sometimes have to "fish" for them even in German, my first language.

Thanks for visiting. Snow should hit tomorrow (Wednesday) so I hope to see it while I am in Frankfurt.

All the best

Bill

Sunday, December 7, 2008

Bill On The Drums

Great time, but I paid for it this morning!

We played at one of those new "smoking clubs", which were formed so that folks could still go to a club and smoke while they drink (smoking in public places has been banned in Germany)and the smoke was so thick and my eyes were pouring tears that I was only able to make it through 3 songs before I had to go outside to recover.

Stumbled in at 3 am this morning with a thick head and sore throat from all the smoke inhalation.

My friend Peter now knows about the EOAD, and I guess it kinda took him aback a bit because I looked like the same Bill he saw a year ago, and he refused to believe that I even had dementia until I reminded him how very punctual I have always been with the birthday cards - sometimes even sending them before the birthday even was due. After giving him several other examples of what's going on, he finally relented and said something like, "But still, that's not an automatic death sentence, is it, Bill?"

"Well, no, but it is a life-changer", I replied, and then told him about all the testing and took him on a tour of the brain over at alz.org.

So okay, he`s still thinking positive and that's good, because so am I.

Putting on a little weight from the beer and all the rich food, but I allowed for a little "weight-cushion" so that's okay.

Thanks for keeping up with the blog and think SNOW for me, please?

PS: Picture later, okay. Can't add one from here.

Bill

Saturday, December 6, 2008

Hello From Rothenburg ob der Tauber And More About The Bracelet

I arrived last evening at 5:30, and although the trip was mostly uneventful, it did have some hiccups.

Hiccup 1. Plane left out of Atlanta an hour and a half late

2. Missed a train stop in Würtzburg (I had fallen asleep) so I got off in Nürnberg and bought another ticket with reserved seat.

3. When I got on the train and found my seat, there were two young ladies sitting in that section. I came to the wrong conclusion that this was not my train, recovered my luggage on the other end of the car and proceeded to find the "right" train.

A conductor assured me I had the right train and I should get my ass back on because they were about to pull out. So I went to what was my seat and it turns out that one of the young ladies had taken my seat hoping I wouldn't show up!

So I showed her my ticket and she vacated the seat and went to sit on the platform in between the trains.

"Billy-Bob", I said to myself, "You need and deserve a beer!

So I told my seatmate I was going to the dining car to drink a beer and that I was going to stay there till time for my next stop.

So I go back to the end of the train, find the young lady I had chased out of reserved seat and told her to go back and sit with her friend.

I then go back to the dining car and order (and promptly consume) 3 bottles of beer.

Much better!!!!!!!!!!!!! *BURP*

4. Got lost walking to my favorite pub last night. In all fairness to myself, it was nighttime and I am staying at an unfamilar Bed & Breakfast, but this is my hometown, dammit! Anyway, I had to ask directions after walking in circles a couple of times. :(

Tonight is the night I sit in on drums with my friend Peter's band TIME OUT and I am very much looking forward to it!

==================================================================================

Okay, so now a little more about the bracelet: It doesn't seem so heavy anymore and it actually had made me feel more secure wearing it.

That's not to say I want something to happen, but if that episode witht the train had gotten worse and I had "flipped out", at least someone would have known why.

My feelings on the trip so far?

I honestly don't know if I can make the trip by myself next time.

More later.

Thanks

Bill

Thursday, December 4, 2008

My Favorite Time Of Year

The Christkindl (Christmas) Markets are going on right now all over Germany, and especially in my beloved Rothenburg ob der Tauber

(Clicking on the highlighted text will take you to the webcams overlooking the town square)

I am a fan of Christmas and have been ever since I was a little boy. I love the traditions of a German Christmas: the markets, going to church on Christmas Eve, and on the return from the services, the exchange of gifts left under the tree by the "Christ Child".

Yes, there is a Saint Nickolaus but it is the Christ-Child who brings the gifts.

In a few hours from now, I'll be heading for home to be with family and friends for a "Pre-Christmas" vacation.

I still have not decided what to tell my friends (my uncle will not be told), but I have this damn bracelet on my right wrist. Take it off when I get there, or leave it alone until someone notices, and then what?

Jesus H, what a dilemma!

Guess I'll just "play it by ear". ;)

Some flyin' music:



Thanks and a whole lotta love!

Bill







Wednesday, December 3, 2008

The Bracelet

WOW! A major awakening when I put it on. It was like "Okay, you're accepting it now, you dummy!"

So it's on my wrist as I am typing this and on the front is the Medic Alert symbol and on the back is stamped: Early Onset Alzheimer's Disease. HTN with a collect telephone number, my MedicAlert registration number, and at the top, a 1-800 number.

All joking aside, I guess I'm glad I have the bracelet, although it feels like it weighs 50 pounds, y'all.

But if it will help, I'll wear it gladly, and maybe after a while, it won't seem so heavy.

This one is for all my friends. Thank you from the heart.

Bill

The Alzheimer Bracelet Story Continued

Here's an update on the bracelet issue:

1. Called MedicAlert and joined their program. ($39.95 for the first year)

Gave them all pertinent info: meds, doctor, next of kin notification, drug allergies etc. In return they will keep all info on file in case it is needed if someone finds me gone BOOGA-BOOGA and calls the number on said bracelet.

2. Bought the bracelet: ($19.95)

3. Paid for overnight shipping: ($21.00)

Total cost: $80.90

As compared to $7.00 if I had been able to find one at a drugstore.

When I questioned the lady about why the bracelets are not as available as, say, a diabetic's or hemophiliac's, she told me it was because they needed the information I had just given her about my disease.

She could not explain why there were bracelets for Diabetics, Hemophiliacs, Cardiac Patients, etc.

Could the reason be....... MONEY???



I don't know, y'all.

I just wish there were a Jonas Salk for dementia!

It's nice of you to visit me here. Please come back anytime

Bill

Tuesday, December 2, 2008

Julian William Craig Loves Me!



And I love him. This is my 8 year old grandson, and he loves playing soccer.

Unfortunately, Julian, (like his Dad) is hyperactive and this is controlled with Ritalin, so that he stays focused and does well in school. We (his parents and my ex) also have to be very careful about his sugar intake.

Although he is a wonderful little boy, the drug he must take to control his hyperactivity also robs him of that "little boy" joy of living, and it's very rare that I see him smile and I have never heard him laugh. (I don't know how he would take to being tickled. What do y'all think? Should I try?)

In this entry I also wanted to ask your opinion about the blog in general. Is it okay? Are there things you would rather not read about? Am I whining too much? Should I stop the music? What improvements could I make?

This video is for my Julian, please be patient as it loads.

Thanks!

Bill

NO Pre-Engraved AD Bracelets Available and HA-HA!

Because my friends on alz.org agreed I needed to identify myself as an EOAD patient during my vacation which begins later this week, today I made it my mission to find a MedicAlert bracelet with the words Alzheimer's Disease engraved upon it.

Now before I get to my rant, I need for you to know that there are many pre-engraved MedicAlert bracelets available, such as Diabetic Hemophiliac, Heart Disease and even Contact Lens Wearer, to name just a few.

Thinking that surely there would be a pre-engraved bracelet for me I visited 7 pharmacies this afternoon, and of the 2 that even had pre-engraved bracelets, AD was not among them.

The closest I was able to get was a bracelet which was engraved with just the word Memory, which I suppose might make someone think I was a member of the Broadway troupe of Cats, and if asked, might favor anyone with that particular tune. ;)

So here's my rant, and the stats to support it:

• As many as 5.2 million people in the United States are living with Alzheimer’s.

• 10 million baby boomers will develop Alzheimer's in their lifetime.

• Every 71 seconds, someone develops Alzheimer’s.

• Alzheimer's is the sixth-leading cause of death.

• The direct and indirect costs of Alzheimer's and other dementias to Medicare, Medicaid and businesses amount to more than $148 billion each year.

So why then are there no pre-engraved AD bracelets, and why must I place an order for one if I need one quickly?

What? I don't qualify?

Not sure how to go about it just yet, but I plan to see that this gets changed.

==================================================================================

Did you notice the "HA-HA" in the title? Here's why:

One of the last places I stopped at to look for my bracelet today was a medical supply store. (A place that should have had my bracelet but didn't.

The lady who waited on me just happened to be someone I used to work with at my hospital and in the course of the conversation, she asked me who the bracelet was for?

When I told her it was for me, she laughed in my face, but stopped very quickly when I gave her one of my patented stares.

"But I thought you were still working?", she said.

So I remembered that she had always known me as a joker before all of this, and took the trouble to explain to her that this is Early Onset, and my capacity to do my job has not yet been diminished.

However, this is a prime example of people and their willingness to believe the "myths" rather than the realities of Alzheimer Disease.

(By the way, notice that I dropped the apostrophe and the s? "Alzheimer Disease" is now the accepted medical term, and I will be using it that way henceforth.

As y'all know, I'm a musician and I like to include something meaningful with each blog entry if I can, so this tune is for my former co-worker and for anyone else who needs educating about AD. I think the words are rather appropriate, don't y'all?



Thanks very much for "being there" for me and all of us who just need understanding and some TLC.

Bill

Monday, December 1, 2008

My First Alzheimer Dream

Today I had the first dream during which I had to explain that I have Alzheimer Related Dementia.

Here's the setting: Went in for a haircut, and as the young lady began cutting it, I suddenly found myself in another area of the mall, wondering what I what I was doing there looking for speaker wire (for a surround-sound system I just ordered for my computer in "real life").

So I said to my self "OMG!" and went back to the barber shop where I found another lady waiting beside my chair. As she resumed cutting my hair, I asked what had happened to the previous young lady?

"She thought you didn't like the way she was cutting your hair, and that's why you left."

"No, that isn't why. See, I was just recently diagnosed with, blah, blah, blah...... and I am not always cognizant of my actions"

And that is where the dream stopped. I found it kinda strange that I am now dreaming about this shitty disease and am wondering if this is my mind's way of finally accepting that I have it?

Comments are always welcome.

By the way, I know that I come across as "bitter" in some of these blog entries, and I suppose I am, but it isn't meant to offend you, my friends, whom I appreciate more than I can say.

So in keeping with that "theme" here's a couple of guys who want to sing you a song from me to you.

Thanks

Bill

Sunday, November 30, 2008

Compensating?





This is a very tricky thing with me: it manifests itself in a couple of ways - one of which makes my conversation partner think I may be hard of hearing. (I am - too much loud rock in the many bands I played drums in , in my younger days).

So what usually happens in the "Are you hard of hearing?" scenario is this:

1. I may really not have understood a sentence, and I will guess at what was said and respond with something completely unrelated to what was talked about, causing my conversation partner to say "Huh?" and then he or she will repeat what was said a little slower until I "get" it.

Secondly, my mind has "taken a vacation"

2. I may have shut out the whole thing (hearing but not listening) and then, when time comes for me to reply, I will again reply with something "off the wall".

Sometimes I will forget a co-worker's name - someone I see on a regular basis and when he or she speaks to me, calling me by name, and I cannot recall their name, I will reply with an innocuous sentence, thereby masking the fact that I cannot recall the name.

So this is what the shrinks call "compensating". One knows there's a problem, but manages to disguise it - sometimes cleverly - and sometimes, like me - making people think I'm deaf or that the lights are on, but I'm not home.

Some recent short-term memory lapses:

1. Putting a dinner in the microwave and forgetting about it till I put the next one in - usually the next day.

2. Opening a soda, and then noticing a bit later that there are already two sitting out - already opened.

These blog entries are helpful to me in that if I write something that I have forgotten or that I did in an inappropriate way, it may clue me to not do that thing again. I also hope that I can refer back to these posts for the purposes of participating in clinical trials.

It would be nice if this blog had a search function.

Have a wonderful Sunday and thanks.

Bill

Saturday, November 29, 2008

Hallucinating?????

Yep, it's got to be the Exelon patch, because I wasn't doing it before I started wearing it, but yesterday sleeping in the daytime (due to my night-shift weekend job), I felt like I was in a Stephen King novel, and even though my eyes were shut, it seemed that I was seeing things very clearly through my eyelids.

Weird, huh?

But what's even weirder is that I was enjoying what I was experiencing!

I remember very clearly sitting by the ocean, playing my guitar and suddenly being swept into the water, guitar and all, and it was okay!

Then, in another segment, I was this young "drifter" who went from job to job and was very good at what I did. So much so that people didn't want me to leave.

But I stuttered, and the longer I stayed, the worse I stuttered.

Anyone wanna try to interpret these weird scenes? ;)

And no, I've never done LSD.

Have a great weekend!

Bill

Friday, November 28, 2008

The Essential Truth Of What Is And What Can Never Be




So often one hears of a person who loses his sight, but gains strength in another one of his or her senses: smell or hearing for instance. Is that always the case, or does it depend upon the person and his/her ability or desire to make the remaining senses stonger? This is a rhetorical question, (unless one of my readers knows the answer, of course).

And if it is the case then what happens with other debilitating diseases? Mine, for instance? If the plaque, the tangles, and the shrinkage start to get worse, do I have another ability to "to take up the slack", as it were?

No, I do not, because AD affects the whole brain. Take another "tour of the brain" on www.alz.org and look at all 16 slides, if you care. Note the "normal" brain and the brain of "advanced Alzheimer's". That is one ugly-looking thing isn't it?

So what's left?

What's left is to keep going, keep working, keep hoping and take each day as it comes, hard as that may be for me sometimes. (I know what I'm supposed to do, it's the actual doing it, that's difficult.)

I have noticed a different "attitude" in myself as I relate to my patients - the ones who are non-emergent, I mean. The ones with the asthma, or COPD or chest pain.
I "stay with them" a bit longer now. I smile more at them (I smile anyway, but now in a more "genuine" way and not in a "well how are we feeling today" kinda way, if you know what I mean.) I draw them out in conversations, ask them where they're from originally, how they like it in Georgia if they're from elsewhere. Ask them if they have a stressful job, that kind of thing.

I think it's because I crave their closeness. Anyone's closeness - Tom's on the phone for instance. Y'all on this blog. Julian when I am with him. Bert (my cat) when he's on the bed with me.

Yep, it's been an interesting journey so far.

Till next time, thank you and enjoy the song and the scenes. May it have special meaning for you.

Bill

"You Were Telling Me About That"

I am hearing this more and more often nowadays.

I'll be thinking I'm telling someone something new and I will have already told them a few days back.

A couple of nights ago, I think I ordered some Christmas presents over the phone but I'm not sure now. I suppose I could plead being very very absent-minded and call the company to see.

Stuttering and stammering is more noticeable. Even the neurologist noticed it during my appointment.

I read tonight that the Exelon patch worsens the Parkinson's, but I haven't noticed that myself, so maybe I'm one of those who won't be affected, and it's only been 2 days since I started with the patch, so I really am not giving it a chance.

Something was written over on my alz.org site about Alzheimer's being a terminal disease which really brought it home to me.

I realize this entry is a bit "disjointed", but I'll get it together again.

Seven days from today I'll be landing in Frankfurt and I am trying to get excited about seeing my friends and family again, but then I am wondering if they'll notice anything different about me. Still haven't decided if I should tell my friends.
(DEFINETELY not telling my uncle!) Maybe if I drink enougnh of my beloved German beer I'll spill it anyway. (The AD, not the beer!)

Here is the webcam from my hometown Rothenburg ob der Tauber: http://www.rothenburg.de/index.php?PHPSESSID=f9ab89640048fb7bf699272b83bcd342&get=1355 (You'll have to copy and paste, and remember they're 6 hours ahead of us, so it might be night-time when you check it)

Wonder what I'll sound like stuttering in German? ;) It's such a harsch-sounding language anyway with all its rolling r's and hard k's . Hope I don't spray my conversation partners! HA-HA!!!!!!!! :)

Well, that's it for now. Got three more nights to work and then vacation.

Hope y'all had a great Thanksgiving!

Thanks

Bill

Wednesday, November 26, 2008

Sometimes You Just Need A Little "Oooomph!" ;)

Sometimes you just have to fight back.

God, I'm so tired of fighting back!

Need some strentgh, please!

Kwitcher whining, Bill!!!!!!!!!!

Tuesday, November 25, 2008

Terminology And Other Stuff

Some appropriate music for the "Journey"




Before I get into the results of today's doctor visit, I need to correct some terminology, okay?

I don't have "Alzheimer's". What I have is called Alzheimer's Related Dementia. The difference between the 2 terms is we won't know if I have AD until I kick the bucket and they take a slice of brain tissue. Then y'all can say, "Well, the poor slob did have Alzheimer's!" :)

I wonder if that's a mandatory thing, an autopsy, if you have Alzheimer's Related Dementia? Guess that's something else for me to research.

Okay, here's what my neuro guy told me today:

1. No tumor
2. No Encephalitis
3. No elevated white blood count (indicative of an infection)
4. No TB
5. And no AIDS

"No AIDS????!!!!", you're saying to yourselves, right?

Right, no AIDS. But not because I am an IV drug user, or had a sexual encounter where I sustained some uh, rear-end damage, or caught the virus from someone who got it from someone else, but because in my job, I have to draw arterial blood from people, and I am at risk for needle sticks.

So I was told today I'm demented (but we already knew that, right?;))related to AD.

Okay, now what?

Well, now (after the holidays) we do the 72 hour EEG. That's the first thing

This is the test that lets me go about my daily routine with EEG electrodes pasted to my head and wearing a device that will record my brain waves, and which will be read by the neurologist after the 72 hours are up.

And no, I will not be leaving the house looking like someone afraid that aliens are going to land and do an anal probe on me! I will be staying at home, reading, watching movies, playing WoW, and sending out for pizza.

I may let someone take my picture for the blog. Depends on how I feel.

Next thing (also after the holidays - next year) will be a trip to Emory University for Neuro-Psychological testing, which will include another EEG and possibly another MRI.

New medicine given to me today:

1. Fioricet for the headaches I am still having. (I can really relate to my patients who have migraines now. Them sumbitches HURT!)

2. The Exelon Patch: a 24 hour medication to help the Namenda.

My doctor (and my respect for him grows with each visit) told me that it is very likely I will be filing for disability, and the reason for doing all of this is to make sure we get all our ducks in a row, to reduce the possibilities of being denied.

This is just fine with me. I like all my duckies in a straight line, and as he says, because I am in a highly-skilled job, we need to cover all contingencies.

Last but not least, how am I feeling otherwise?

Well, if it were not for my support group (y'all) and for my fellow ARD (Alzheimer's Related Dementia, remember) friend Tom, I'd be a lot worse off mentally I can assure you.

That's why I am so glad there's y'all!

Thanks for coming along on the journey, and may you never have to make it yourself!

Enjoy your holiday with your families!

Love

Bill

Major "Apprehensa-tit-i-ty"!



Today at 1:45 is my neuro appointment, and I'm really not looking forward to going, and I keep asking myself, "Wouldn't things have been okay if you had just never questioned all this memory loss and shit?"

And also I am asking myself: "How much worse are you making it on yourself now that you know????

My point: Wouldn't it be better not to know you're dying and then just keel over dead????

Irrational thinking, right?

Yeah, I know: It's apples and oranges.

Everybody wants a quick death (preferably shot in the back by a jealous husband while in the "saddle" ;)), but few of us are that lucky.

Trouble with me is that I am a "Keep It Simple Stupid" (KISS) kinda guy, and I hate things that complicate my life!!!!

When I run into complications, I'm like that old ATARI game where, if you're not careful, you get shocked running into walls. Anyone remember the name of that one?

Anyway, glad y'all are "here"

I'll write when I know something.

Love

Bill

Monday, November 24, 2008

Drinkin' Wine, Spodee-O-Dee! :)

From a very good friend: Shayna. Read and "Drink up, Dudes and Dudettes". :)

I even have you some good wine-drinkin' music to go along with the reading material below........


Shayna, this one's for you, Hon!

How Red Wine Compounds Fight Alzheimer's Disease (http://www.sciencedaily.com/releases/2008/11/081121092454.htm)

==================================================================================

ScienceDaily (Nov. 23, 2008) — Scientists call it the "French paradox" — a society that, despite consuming food high in cholesterol and saturated fats, has long had low death rates from heart disease. Research has suggested it is the red wine consumed with all that fatty food that may be beneficial — and not only for cardiovascular health but in warding off certain tumors and even Alzheimer's disease.

Now, Alzheimer's researchers at UCLA, in collaboration with Mt. Sinai School of Medicine in New York, have discovered how red wine may reduce the incidence of the disease. Reporting in the Nov. 21 issue of the Journal of Biological Chemistry, David Teplow, a UCLA professor of neurology, and colleagues show how naturally occurring compounds in red wine called polyphenols block the formation of proteins that build the toxic plaques thought to destroy brain cells, and further, how they reduce the toxicity of existing plaques, thus reducing cognitive deterioration.

. . .

Teplow's lab has been studying how amyloid beta (Aß) is involved in causing Alzheimer's. In this work, researchers monitored how Aß40 and Aß42 proteins folded up and stuck to each other to produce aggregates that killed nerve cells in mice. They then treated the proteins with a polyphenol compound extracted from grape seeds. They discovered that polyphenols carried a one-two punch: They blocked the formation of the toxic aggregates of Aß and also decreased toxicity when they were combined with Aß before it was added to brain cells.

"What we found is pretty straightforward," Teplow said. "If the Aß proteins can't assemble, toxic aggregates can't form, and thus there is no toxicity. Our work in the laboratory, and Mt. Sinai's Dr. Giulio Pasinetti's work in mice, suggest that administration of the compound to Alzheimer's patients might block the development of these toxic aggregates, prevent disease development and also ameliorate existing disease."

Human clinical trials are next.

"No disease-modifying treatments of Alzheimer's now exist, and initial clinical trials of a number of different candidate drugs have been disappointing," Teplow said. "So we believe that this is an important next step."

=============================================================================

First in line for the human clinical trials! WHOO-HOO! :)

Y'all have a great week, and don't forget to send an e-mail to Oprah and ask her to do a show on Alzheimer's. http://www.oprah.com/contactus. Be sure to click on the e-mail section!

Thanks

Bill

Sunday, November 23, 2008

Wanna Help?

Some of us on www.alz.org have started an e-mail campaign suggesting Oprah Winfrey do a show on EOD/AD (Early Onset Alzheimer's/Alzheimer's Disease).

It would be greatly appreciated if those of you following my blog, and also those who have loved ones with AD would also send an e-mail in care of http://www.oprah.com/contactus

Below is a copy of what I wrote:

Thanks very much!

Bill

===============================================================================

Dear Oprah,

I am a 58 year old (otherwise very healthy) health care professional (respiratory therapist) recently diagnosed with Early Onset Alzheimer's.

In the course of my work, I see many patients with dementia, but never expected to be one myself, and I am very concerned because I love my job and I want to be able to take care of my patients as long as I am able.

I am very fortunate to have a neurologist who is following me very closely, but I know not everyone with AD is as lucky as me, so I would like to suggest you do one of your shows on Alzheimer's, current treatment, and research for a possible cure.

At present, my own symptoms are such that I can still work, but who knows what the future holds?

I am currently availing myself of all clinical trials such as www.formemory.org and others so I can possibly be of some assistance to someone else, so I consider myself to be very proactive in battling this disease.

Thanks for reading my e-mail and considering a show on this very important subject.

Sincerely

Bill Craig, CRT, RCP

XXXXXXXXXXXXXXXXXXXXXX
XXX-XXX_XXXX

Is This A Whine?

If so, can I have some cheese, please? :)

One of my favorite things to do at this time of year is to buy Christmas presents for my friends and Significant Other.

Those people who foolishly think of me as a friend and "put up" with me throughout the year always are thought of in special ways with gifts that are geared toward their interests, and it is just a thrill to see their happy "little kid" smiles when they open their presents. In short, it gives me a great deal of pleasure to look for and present them with gifts.

Because it is such a special activity of mine, it's a "throughout the year" activity and by the time the holidays are here, it's all done.

This year will be a bit different, because (are you ready for the whine?), I'll be on my own with no Significant Other.

I think the anti-depressants (I am on two: Welbutrin and Cymbalta) may help a bit, and it would help a lot if I had to work, but unfortunately it's my turn to have Christmas off.

Most of the time I'm pretty good at "sucking it up", but not at the holidays, and not with the AD and without her.

Anybody got any suggestions?

Other than going to Atlanta and getting laid, I mean! ;)

It's SUNDAY!!!!!!!!!!!! That means it's MY Friday, and I am off for three days.

Have a great week coming up!

Thanks

Bill

Saturday, November 22, 2008

Mixed Emotions, Etc.....

I don't know how I feel about this, but here's a site you may find helpful if you have a loved one with AD: http://www.alzstore.com/index.html.

I probably need that time/date clock, but I'm not really too thrilled about the price. Right now I'm still fine looking at the bottom right hand corner of my computer, and sending myself reminders with my YAHOO account about appointments, work schedule, company coming, etc.

Had an episode this evening when I could not find my car keys, and I turned the place upside down till I was almost late for work. Last place I looked is where they were: they had fallen into my courier bag (my so-called "Man-Purse" :>)) when I laid them on top of it instead of on the kitchen table. I guess I need a better system, right? I'll make a sign that says CAR KEYS in big letters with a hook to hang them on.

I get a little nuts when I lose something like my keys or my glasses and I don't always stop and think "rationally" when that happens. I'll look in a few places, and then I'll convince myself that I did something stupid and left them in the car or in the door. Then I'll think that Bert (my cat) might have batted them off the table and played with them till he bats them under the couch (although he never has done anything like that), and then I get really stupid and think someone's come and taken them, because I sometimes don't lock the door when I come home.

If you're thinking "I bet he's a joy to live with", you don't know the half of it!:)

Woke up this afternoon with a "back of the head" headache, but nothing as incapacitating as I had after the spinal tap. This leads me to believe that possibly all my spinal fluid hasn't come back. I'll be seeing the neuro guy next Tuesday so we'll see what's new at that time.

Thanks as always for reading my blog!

Bill

Home For The Holidays

Well, the PRE holidays, anyway.

Twice a year I manage to get home to Germany and visit my friends and family, and this time although I can't make it right at Christmas, I will be there for the start of the Christmas markets and festivities, and since I am a big fan of Christmas, it's my favorite time of year to visit. I'll be there from December 5th through the 11th.

Every one who hears me say that wants to know "why only for 6 days, Bill". It's because I don't go as a tourist and 6 days is long enough.

You know what they say about fish and visiting relatives right?

"The first few days are okay, but after a while it begins to stink."

This year is also a sad time to visit, since I have an uncle with lung cancer who isn't doing so well and this could very well be my last time to see him alive.

He will not be told of the AD, and I am wondering about telling my best friend. I know he would understand and empathize, but hell, it's Christmas and I don't feel like going over there and dropping the "Alzheimer's Bomb" and pooping on the party, as it were.

Something to think about.....

So did you watch the movie about Alzheimer's last night at 9? I had to work, and forgot to set the DVR, so I guess I'll have to catch it when it comes back around. I read the reviews and apparently Joanne Woodward and Richard Kiley were great in it.

Hope you have a great rest of the weekend. It's cold as well-digger's butt down here in Georgia!

Thanks for your visit!

Bill

Wednesday, November 19, 2008

Every 72 Seconds........

...... someone is diagnosed with Alzheimers. By 2020, it will be every 32 seconds.



We need to get a grip on this disease, ASAP.

Thanks

Bill

Tuesday, November 18, 2008

The Straight Dope and Other Stuff

For about 7 years now I have been a member of The Straight Dope ( ), an international message board with some very caring and knowledgable folks as members. Got a question? Post it there and within minutes you will have an answer.

I mention the Dope because many of my friends are there, and they have been very kind and supportive of their friend "Quasimodem" (my nickname there). The slogan there is "Fighting Ignorance Since 1973 (It's Taking Longer than We Thought!) and I highly recommend joining. Not only for questions answered, but for advice and saving money.

In other "Bill News", I have established telephone contact with Tom, a heretofore "online" friend from the alz.org website. He has been so supportive and helpful to me, and like me, Tom has good days and bad days, so we make each other available 24/7 just in case we have a "trouble spot". Tom has his very own strong support in his wife Gerry who refuses to believe anything except that her guy is going to get better. We hope to meet each other in real life in either Roanoke Virginia or Asheville North Carolina next Spring. I am very glad to have him as my "lifeline", because I have had episodes where I needed someone to "talk me down", as it were.

Bought an XBOX 360 today for my grandson Julian when he comes to spend the night and also when he comes to visit for the holidays. For Julian. Yeah, right! ;)

Next neuro appointment is the 25th of November, and I suppose we'll find out then if your friend Bill has Mad Cow Disease on top of everything else!

Moo.

Hope your week is going great and thanks for your visit. It means a lot to me.

Bill

Sunday, November 16, 2008

New Beginnings = Little Victories

Sometimes, when I do something "routine" or "normal", it makes me feel better.

For instance: Getting a haircut, trimming my nails, washing the car, changing the sheets on the bed, all of those things give me a feeling of "comfort" and a feeling of "accomplishment".

That doesn't seem like a "big deal" to someone who has a "normal" life, but for someone who has no idea what the new day will bring as far as how he feels, those "little victories" feel just fine, thank you.

Plans for this upcoming week include catching some sales for Christmas presents for my friends and family back home in Germany, doing some packing, maybe some cleaning, taking some old clothes to Goodwill, take some food to the animal shelter or maybe "none of the above".

Maybe I'll just immerse myself in Azeroth (World of Warcraft) with my warriors Esilem and Wolkenlaufer, and do some "Questing".

I find if I put too much pressure on myself to do a thing, it either doesn't get done or it gets done with a very bad attitude. I'd rather let it all happen spontaneously.

Whatever you have planned this week, be safe and stay healthy.

Bill

Early Onset Alzheimer's And Intelligence

Many of the people who now know of my diagnosis are wondering why I'm not sitting in some corner drooling, or how I can still function on a day to day basis, (i.e. drive, buy groceries, do my job), and they're asking themselves if I may not be overreacting.

I can tell because when I tell them to ask me questions, more than likely they'll ask what I'm doing (or not doing) that makes me agree with my doctor that I have EOAD?

When I mention forgetting the day or the date, 9 times out of ten I'll hear, "Oh, hell! I do that!!!!"

It's only when I go into detail such as asking them "Well, have you ever convinced yourself that you're off on a certain day and didn't go into work till someone called you? Have you ever gotten disoriented while driving a familiar route? Did you ever misplace an item and then swore someone stole it from you?" - that they get quiet. I know they mean well, but they just don't take into consideration that it isn't just one thing in the course of a day, it's many things.

If I had a nickel for every time I heard someone ask me, "Don't you remember??", I could retire early.

Early Onset Alzheimer's has nothing to do with suddenly getting stupid, but it has everything to do with being frustrated, and what is more frustrating than not remembering something is someone close to you not understanding that frustration and "going off" on you, because they can't see how hard you try to be normal.

Also Alzheimer's is not just forgetfulness. It is depression, it may be accompanied by Parkinson's, and it for sure can be accompanied by a slew of side effects from the medications.

If you're following this blog because you have a loved one with AD, then do yourself and them a favor and educate yourself, because it is possible to do more harm than good.

Enjoy your Sunday

Bill

Saturday, November 15, 2008

Understanding Dementia

I want to share an article with you which may be downloaded here: http://www.alzheimercambridge.on.ca/about_dementia.htm

You'll need to copy and paste the link into your browser and then scroll down the page till you find the article titled Understanding The Dementia Experience.It's a very well-written primer on AD and it's stages, and how bad things can get. It will also help to explain some of what is erroneously seen as aggressiveness or belligerence.

After reading it myself, and knowing I am in the beginning stages of AD, I couldn't help but think how very strong a caregiver must be. Not only strong, but very intelligent and vigilant.

As you read the PDF, think of a magician and how he or she performs magic: How? By distraction, and in its latter stages, when the patient can no longer perform tasks by himself, the caregiver's job is to figure out a way to steer him in the proper direction without "arguing" him into it and many times that will call for "creative distraction".

One example cited in the article, written by Jennifer Ghent-Fuller, B.A., R.N., M.Sc.N, mentions a man who would not perform his "bathroom functions" until the other guy in the bathroom left. His caregiver figured out that he was seeing himself in the mirror, and when she had the opportunity, she covered the mirror with a sheet.

So as I was reading this article, one thought kept surfacing: "Bill, do you really wanna put somebody through this?"

No. No, I don't, and that is why I'm willing to do whatever it takes to keep myself mentally sharp. Right now the Namenda has been in my system for a month, the Welbutrin and the Cymbalta are keeping me "levelled" out psychologically, but I still notice myself acting erratically or forgetting the name of my grandson.

The job? So far so good, and I can still drive and carry on a conversation except when a word fails me.

Thanks as always for reading.

Bill

Friday, November 14, 2008

Forgetting Stuff

I am so glad that the majority of my bills are now paid by auto-debit, because in my current state of absent-mindedness, I don't think I could remember all the due dates and amounts.

In my last entry I mentioned misplacing things and then not being able to find them when they are needed.

The latest is a credit card I use only in emergencies, and the only reason I haven't panicked is because I know it's somewhere in my apartment. I know this because I checked the latest charge and it was made about a month ago, and nothing has been charged since then, so it's a matter of just finding it. More than likely it's in a pocket of a pair of jeans (I'm bad to not return a card to its place in my wallet). If not, then of course I will cancel it.

Another instance which has me worried occurred Thursday.

My answering machine took a call regarding a television delivery, and while lying in bed reading Thursday night, I happened to think that I needed to set up an appointment to have it delivered Friday.

So I laid down my book, get out of bed and in just that little bit of time (seconds) I had forgotten what I was getting out of bed for! That is the fastest I have ever forgotten anything. I had to stop and think, and when the answer didn't come to me right away, I just let it go and it "came back" a few minutes later.

This is happening more and more often.

One other "neurological symptom" rearing its ugly head here in the Autumn of my years is stuttering. As a child I had a severe stuttering problem which I was able to overcome by speaking "rhythmically", as with a drumbeat.

Recently, I have been in "panic attack mode" several times to the point of once again stuttering, which is very frustrating. Not only the stuttering itself, but the "hesitation" which occurs when I cannot "find" a word. When I am face to face with someone and this happens, I am very cognizant of how they are reacting, seeing it in their "knitted" brows and wishing they were anywhere other than with me. My recent "Significant Other" was that way: I could tell by her body language and the narrowing of her eyes into slits that she found this sudden change in me disgusting.

Another example of a form of denial, I suppose: I look fine on the outside, but she can't deal with the changes on the inside, so she bailed out.

Good riddance.

Do I sound bitter? ;)

Have a great weekend!

Bill

Thursday, November 13, 2008

My EOAD Support FORCE




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I am so very fortunate to have some wonderful friends making this journey with me, and here are just three of them:

That's me with my grandson Julian at the Georgia Aquarium, next is my Grand Niece Madison born just this year, and the third picture is my Grand Nephew Matthew.I call them "The Nukes" (for "nuclear family"), and as I add entries to this blog, I invite you to send me a picture to add to my EOAD "FORCE".

I just wrote an e-mail to a friend in which I told her that heretofore seemingly insignificant things have suddenly become very important to me, and these "things" are "people". Wonderful people such as my EOAD buddy "Tom T" whom I met through the message board of alz.org, and whose comments you have read on this blog. Also my friend from "Down Under" who calls himself "The Loaded Dog", but who's real name is Andrew, and many others whom I hope to have you meet as we continue this journey into "uncharted territory".

It's great to have the support of my friends and family, and I know to treasure that.

More later.

Have a great day

Bill

Wednesday, November 12, 2008

Symptoms So Far

So you've read my words, you know my fears and my experiences, but what about my "symptoms"? Here is a short list of what I have noticed myself. I have yet to ask others what they have seen.


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Alzheimer's symptoms so far:

1. Short-term memory loss (dry cleaning will be in plain view and I will still walk out without it, despite having told myself just minutes before that I need to take it with me)

2. Loss of words (even very common ones) during conversations

3. Inappropriate speech

4. Aimless walking around either at home or on the job.

5. Forgetting of appointments

6. Inability to think logically (would have ordered a piece of furniture which did not match what is already here)

7. Misplacing objects, unable to find them in their usual locations and thinking they may have been stolen. This often includes money or a passport or even car keys

8. Inability to retain even short pieces of written material

9. Tremors

10. Little or no emotion. Passive-aggressive behavior

11. Inability to focus on any one thing for any period of time.

12. When driving (and this is a biggie) I will sometimes make a turn, look in the rear view mirror, see a car almost on my bumper, and ask myself, "Did you just turn right in front of that guy???" In other words, "second guessing" myself.

That's just a few things, and really just "off the cuff". I am sure that if I set my mind to it (focused in other words) I could come up with more.

In a future entry, now that "the cat's out of the bag", so to speak, I will ask others to make a list.

Feel free to comment on any of these, and enjoy your day.

Bill

Tuesday, November 11, 2008

"Hello Walls"

Remember that old Faron Young tune? Some of you are probably too young, but it's one of those "cry in your beer" old-time country tunes, about a guy who misses his loved one, so he winds up talking to inanimate objects such as the windows, ceiling and of course, the walls.



"Now why would he bring that up?", you may be asking yourselves.

Well, I am bringing that up because there was a time when I would have felt like that guy in the song, but now I can't even get up the energy to be angry at her anymore, and I am wondering about the significance of that?

Am I entering another stage of EOAD? The "I don't give a shit about anything anymore" stage?

I have noticed I am not as fastidious as I once was: don't clean my place as often, hate to even load the dishwasher, and on the days when I stay in, I'm likely just to give myself a "spongebath" rather than a complete shower. Same with shaving or even eating anything, and if I do eat something, it's not a "meal", but one of those tuna-paks.

There's very little on the internet about AD and broken-up romances, and because I have only my own feelings to measure, I will: A year ago, I would have done anything to get her to stay. Now? Meh.

Again: is it significant?

Your thoughts?

Have a great day and stay in touch. It's an intersting journey.

Bill