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




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

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.


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

Monday, November 10, 2008

The "Mysterious Protein 14-3-3"

One of the vials of my spinal fluid is being examined for this protein.

Know what it is?

Would you believe MAD COW DISEASE!!!

Shortly before the procedure last Friday, I got a call from the lab in the hospital where I had it done, and was asked some very interesting questions, to whit:

1. Have you ever served in the military? YES

2. Ever been out of the country? YES

3. Where? GERMANY (my home)

4. Consume any meat products while there? YES

Okay, to explain number 4: Because of my rheumatoid/gouty arthritis I practice a "vegetarian" diet. I put that word in quotes because I am not a true vegetarian or vegan, because I allow myself to eat chicken and some fish/shellfish.

But when I go home to Germany (twice a year on the average), I do "fall off the wagon" so to speak (more like a running jump!), and go a little nuts on sausages and pork (Wienerschnitzel and pig knuckles - okay, okay - stop gaggin' already!), and even though the practice has been banned, I may have consumed some food products contaminated by the protein which causes Bovine Spongiform Encephalitis or as it is generally known "Mad Cow Disease" or just BSE.

If you'll remember, the disease began among animals who were fed other animals ground up in their main feed, which caused them to become infected with
prions, deadly "rogue proteins" that contain no DNA.

In its human form BSE can turn into vCreutzfeldt-Jakob Disease, which although thankfully very rare, can kill in under a year.

Do you recall me writing that my neurologist is leaving "no stone unturned"? Well, he is exploring all the options, just as I am, and that is why he took so much of my spinal fluid, and that's why all the questions from the lab guy.

Do I think I have it? No I do not, because if I did, I'd be dead already. Instead I'm just "little ol' crazy me" trying to figure out why he's got CRS. (Can't Remember Shit!) But as my pal Tom T says, it's just one more thing it could be other than AD and he's right: It is a "lose-lose" situation.

That's it for this edition of my "Nightmare". Stay tuned and thanks for caring about me by following this blog.

Bill

Sunday, November 9, 2008

Getting "Stabbed In The Back"


Hey

Here is a play-by-play of the spinal tap from Friday morning:

1. Arrive at hospital at 8:30, and get checked in and prepped - which at that time consisted of just stripping and putting on a gown, INT (IV) started, and blood drawn. It took two IV techs to get the vein, although I am not usually a "hard stick). Yeah, it hurt, but I'm not a "baby" usually, so it was okay. I don't always hit the artery (for arterial blood gases in connection with my job as a respiratory therapist either, so I took no offense).

The nurse drew 9 tubes of blood which were needed to rule out all the funky stuff that could be going on inside my head.

2: 11:30: My neurologist shows up (finally - procedure WAS scheduled for 9)

3. 11:45: We begin. I was told to turn to the wall and bring my body into fetal position. (If I had known then what the pain would be like, I would have gone into fecal position! ;)
Swabbed down with Betadine, and injected with Lydocaine to numb the site.

4. 11:50: LP needle gets inserted (don't know the size, sorry, maybe 18 gauge, though) . It took him three tries before he found my "G-Spot", but he did find it finally, and drew enough fluid so he had three vials for himself - one of which will be stored for 30 days.

I suppose he needed some confirmation of where he was, so he began poking around in there.

I wish he had not done that, because what heretofore was a pretty "easy" procedure, then became hell on earth, because he hit the particular nerve he needed and, not expecting it, I of course jumped, he lost his site, but was able to regain it and resumed - hitting that spot a total of three times. Ouchie!!!! :(

5. 12 noon: Procedure over, needle out, hole covered up, and then I was instructed to lie still for 3-4 hours. (I made it through 2 before I began bribing my nurse to let me go home. In retrospect , I probably should have lain there the whole 3-4 because the headache which followed has stayed with me, and is still with me, even though I am taking Tylenol and drinking elephants full of Pepsi Max, which has a bunch of caffeine.)

To quote a portion one of my favorite Dirt Band tunes:

Video Tape
Words and Music by Steve Goodman

"If your life was on video tape
Wouldn’t everything be all right?
When your head hurts the morning after
You could roll it back to late last night
You could replay all the good parts
And cut out what you don’t like
Oh wouldn’t you be in good shape
If your life was on video tape."

Fast forward - I was supposed to have worked Friday night, but at the last minute was able to get a friend to swap Friday night for Monday night, so I returned to work Saturday night thinking everything was going to be all right.

Wrong.

I didn't even last 5 hours into my 12 hour shift, had to check myself into my own ER as a patient and get sent home at about 4 this morning. I was given fluids in ER consisting of, Reglan - for sick stomach, Benadryl - an antihistamine to prevent swelling from the Decadron - a steroid to prevent and also reduce swelling. After about 40 minutes, and no relief from the headache ( pain scale 2-3 while lying absolutely still, 8-9 with any movement - even just a sigh), I was given some Dilaudid (1 mg) and 12.5 mg of Phenergan for pain and nausea.

So here I am, at home, taking a Vicodin for the headache which is still with me, and every now and then writing a few lines in this blog so as not to forget anything. (I have been writing for an hour and a half now).

If I am no better by tomorrow (Monday), I'll be going back to the hospital for what is called a "Blood Patch" which is taking some of my own blood and injecting it into my spine to replace the fluid which he took and which may have leaked out after the procedure, and to make the pain go away.

So now we wait. I was called at the end of the day by my Neuro guy who said "So far, so good", but reminded me that those other fluid samples will take a week to hear back from, and one (the fluid which will be examined for protein 14-3-3-, a while longer than that.

Am I glad I did this? Yes.

Would I do it again? HELL NO!

I spoke with a friend afterwards and told her that I think there may soon come a time when I throw up my hands and say "Hell with it! No more!!!!!" I'll still keep taking the meds, but I am thinking VERY HARD about the 72 hour EEG which he wants me to do now. (This is wearing a monitor/computer while going about my normal routine and keeping a diary of symptoms).

Sorry, I am trying to be optimistic here, but "Some Days Are Diamonds, Some Days Are Stone". Right now, I'm not feeling very "rich".

And no - SHE wasn't there. However, my ex-wife (and best friend) was, which is much appreciated. What did I expect, right?

Thanks for reading, enjoy the rest of your Sunday and have a great week coming up.

Bill

Monday, November 3, 2008

Last Will, LIVING Will And Other "End Games"

Hey

Working on that this week. Not being morbid, just want to have that stuff out of the way so that I can concentrate on other things, like surviving this beast of a disease.

One thing I haven't lost, and that's my libido. Did lose it for a while (due to depression meds, I think), but it came back, and that is not necessarily a "good thing". With the AD, I can think of no good reason to become involved in another relationship. I wouldn't want to do that to someone.

So , what : Self-Gratification? Use myself? :) Send myself flowers, a dinner, a movie, and then "Hey YOU, I just spent $100.00 on you! Lay your ass down! No way am I goin' home empty-handed!" (excuse the bad pun!) ;)

Do I sound sarcastic? Yeah, I do sarcasm very well these days, I reckon. Gotta work on that a bit.

It's a beautiful Georgia day, and I'm gonna get on my Trek 1000 and do some cycling. I hope the weather's nice wherever you are, and that you'll get out and soak up some sunshine too.

Meanwhile, here's a link if you'd like to get to know me better: http://www.d2d4wetnoses.com/. I hope to do this again next September, if, that is, I remember how! ;)

LATE ADDITION:

Late this afternoon I got into a "cleaning frenzy". I use the word "frenzy" because that is what it became. As always, I began in the kitchen and was going to work my way back to the bedrooms, but it quickly became something which had no rhyme or reason and I began rushing from one thing to the next, not remembering what it was I had been doing until I saw evidence of it not having been done, so I went back to that.

This is very unusual for me, because I have always been described as "anal" and very exacting in my tasking, but lately I don't clean at all, until I get into one of these "frenzies" and then I try to do it all in an OCD-kinda way, but never without "rhyme or reason", like today.

In the midst of it all the trembling started, and this lately has been the rule rather than the exception. Being home is not comfortable. Being at work is.

Have a great week!

Bill

Sunday, November 2, 2008

WHAT If........

........ we ONLY consumed foods and supplements (and meds, of course) that were found to be beneficial for AD Recovery? Do any of you do this already and to what degree and what are you eating/drinking? I know that certain foods are "brain foods", but I don't know what all of them are as they relate to AD.



In other "Bill News", I have been noticing an intermittent "tremor" in my voice. Not as bad as Katherine Hepburn's, but bad enough to where I notice it, and it is making me very self-conscious. Also on certain days, I notice problems with balance, and since I also have double vision, I have to be very careful on those days about riding my scooter which I bought to fight the gas prices.



Also Lithia Springs, Georgia has spring water which contains natural lithium, which has been found to be beneficial to some of us with AD. Here is the link, and I have no interest in the company. Just go and read and see what you think: http://www.lithiaspringswater.com/


And this < is my way of handling what's coming up on Friday of this week!

Have a great week yourselves and thanks for your interest in my blog and especially for your help and empathy!

Bill

Saturday, November 1, 2008

Some Hopeful News For Me And Others With AD

Thanks to Guy Michetti for posting the following link on the message board of our Alzheimer's Online Community at http://www.alz.org/ about a doctor who may have discovered a way to slow the progression of AD in her husband by using non-hydrogenated coconut oil in his oatmeal. Not only does it seem to be slowing the disease down, her husband is also getting some lost memory function back. The link is here: http://www.tampabay.com/news/aging/article879333.ece. Be sure to also read the comments at the end as well.

Looks like one more supplement to be added to my already long list. We all have to try whatever's out there, and if that means helping ones' self, then that's the way it has to be.

Spinal tap is coming up next Friday, and I am hoping that it will go without a hitch. I am enjoying reading everyones' posts and threads on the message board and I am proud that I have y'all "in my corner". I don't feel as "alone" as I did a week ago. I will contribute more as I feel more comfortable.

Thanks for visiting here as well!

Bill