Monday, June 29, 2009

Random Thoughts

Let's just let this be a little pot pourri of random thoughts, okay?

Some stuff that happened in Germany when I was little:

1. I remember one of my teachers (in the German school - I had to go back and forth, according to wherever my Dad would be stationed, and depending on if they had an English-Speaking School on post - most of the time they didn't, so I often got caught inbetween the two languages), Dr. Hertz.

Think of him as a very kind old man who loved to teach children, and one who understood my dilemma: a child born in Germany, mostly German, and soon to be travelling to the USA.

German Math had us starting with decimals in the 4th grade, but when I got to the USA, it was fractions, so I had to re-learn everything: slow down, back-track, whatever. Anyway, it put me so far behind it confused me!


Remember, I said most of my memoirs are going to be "out of sequence", okay? This is one of those (many) times!

2. Another German Christmas Memory: Knecht Ruprecht (The Bad-Ass German Santa Claus) came to see me one Christmas Eve, raked his broomstick across my face (made marks!) and told me that if I didn't fall down on my knees right then and there and beg forgiveness for being a spoiled brat, not only wasn't I going to get any presents that year, but neither would any of my future children!

Well, what could I do?

What could I do?

I got all contrite and called her my Mom ("Knecht" was Mom)

She threw down her broom and called me her son,

And I came away with a different point of view!


Christmas is, as Christmas does

And if you wanna get gifts,

It better be because,

You were good the whole year through!


(Apologies to my hero, the late WONDERFUL John R. Cash! - that having been a "take-off" on the song "A Boy Named Sue"))

I have more Germany memories and pictures to share with you (among them Anita's letter to my Dad's parents - the penmanship so exquisite you won't believe it), but those will have to wait for a later time.

For now, I would like to acquaint you with the music of Bill Dalziel of Scotland. He is a friend of Becky's, who is a friend of mine through Alzheimer's and this blog.

This first tune "reached" me right away.




And this is the one which made me ask: "Why haven't we seen Bill in the US, yet?"




Becky, thanks for sharing Bill with me/us, and please give him my best.

I'm a "Bill Dalziel Fan"!

Alba gu brath!

Please remember to click to feed and vote. Don't do it for me, okay, and don't do it for anyone else.

Do it for THEM!


The Animal Rescue Site



Thanks

Bill

Saturday, June 27, 2009

Living In The Country

Loving it!

No more screaming ambulance/rescue sirens calling my name!

No next door neighbors complaining about my amplified guitar music (or sometimes playing my drums!)

No more smelly sewers.

I get to ride my bike (or run) without fear of being hit.

In short, it was good move for my physical, mental and spiritual health. The little church we attend is also out in the country, has a very small membership, and is a very soothing place for me to be - even though me and "The Big Guy" are at odds sometimes! *LOL*

Getting re-acquainted with my in-laws has also been very beneficial to me. My nephew-in-law Jimmy is a realtor and next week we'll be helping getting his float ready for the 4th of July parade.

He had asked me for a suggestion of a theme, and I thought right away we needed an Alzheimer's float with me sitting in the middle, drooling, picking my nose and wetting my pants! *LOL* (None of my in-laws have yet accepted that I have EOAD or why I'm "not acting like it" and laughing about it.

Jimmy is also a pilot, and I told him I had taken my "Discovery Flight" to start my flying lessons when all this came down, so I stopped, "Because after all, who wants to fly with someone who has AD at the controls?"

I laughed my ass off, but I was the only one who laughed that hard! Jimmy and Pat (his wife) do not yet understand my "attitude".

These are the good things in my life right now.

Before I leave you for today, I have one of those "Why is it?" questions for you:

Why is it, that when us guys are asked a question to which we don't know the answer, we sometimes scratch our heads? (Mine actually itches!). I have never seen a woman do that! *LOL*

Did I play you this first song alrady? I don't remember, but it kinda goes with the "theme" of this entry, so please enjoy it again if I have!

The Animal Rescue Site


Remember the fur-babies, and to click to feed and vote! Only 30 more days left!

Thanks

Bill




This isn't the original version (if you want the original, I'll replace this one), but I thought the orchestra gives this song a "fuller" sound. Enjoy!

Friday, June 26, 2009

What I Miss

1. I miss the "old" me. The guy who'd do or say something absurd just to see who's paying attention. A "play on words", if you will.

Case in point: A couple of weekends ago, the inlaws and D & I went out to eat at a very nice seafood restaurant. Very nice, but very small, and very popular. So much so, that if there's a lot of people eating at the same time, the three air conditioners cannot handle keeping everyone comfortable, so there's a lot of "menu-in-the-face-waving" going on, and, in my case, a lot of sweating.

My niece: "Hot, isn't it, Bill?"

Bill: "It's not the heat, it's the humanity!" (that's called a malapropism, by the way - Yogi Berra is really good at those!)

Laughter all around.

But see, that was the first time in a very long time, that I've felt that loose!

2. I don't smile that much anymore. On the contrary, sometimes it's all I can do to keep from crying, and if you were close, you'd wonder at those sudden "tune-outs" of mine, when I seem to be staring at nothing (as related to me by my wife).

3. I used to love to make eye-contact with my conversation-partners, but now I'm so afraid of stumbling over (or not knowing) a word, that I look down as I speak and bite my lips a lot in concentration.

4. I miss my PATIENTS! Oh, GOD, I miss them so much! Making them feel better, interacting with them, and teaching them how to breathe and deal with their COPD. I loved meeting them in the super-market and just standing there speaking with them, and asking how they're getting along. Many times I'd forget their names, but they never forgot me,and we used to joke that if they'd lie down flat (wherever we might happen to meet), I'd know who they were!

This effing disease has taken so much away from me!

The Animal Rescue Site




Thanks

Bill

Wednesday, June 24, 2009

Well, DUH!?

I'm on this one a little late, peeps (been kinda busy), but this article (click on the title above, to take you to the article, which purports that early diagnosis of AD saves money!) really sorta points out the obvious, don't you think?

And then I'd like to link you to an article which my friend Natalie has on her website: http://www.dailydementianews.com

http://ezinearticles.com/?Narcissism-and-the-Aging-Adult---What-Caregivers-Can-Do-to-Deal-With-This-Difficult-Task&id=2425128

The subject is narcissism, and it made me smile when I saw it, because a former SO accused me of being that way.

What? Just because I go to tan, like to look and dress nice, and think I'm "God's Gift To Women"????

That last was a joke: I don't think that at all. The best compliment I ever had about my looks was that I am "attractive in a John-Wayne kinda way". I have also been accused of looking like Jerry Springer, John Denver, Elton John and (sometimes) the late John Lennon.

But enough about me! What do you think of me????? Ha! Gotcha!

So anyway, no, I'm no narcissist. Not unless you count having to compensate for my homeliness by being clean and wearing clean (if not expensive) clothes.

Back to Natalie's site, though: Please scroll back up, click the link and bookmark her site? Hers is much more informative than mine, and she is a caregiver as well, so she has first-hand knowledge you may be able to use for your loved one.

The "Dog Days" came early this year here in Georgia, and the heat and humidity are just about unbearable, so wherever you are, I hope you're comfortable.

Don't forget the four-legged ones! They must be miserable as well, although some will end their misery by being euthanized.

Here's the link to click to feed and vote for Paulding Humane in the Shelter Challenge, and please let someone else know to do this, okay?

The Animal Rescue Site



Thanks,

Bill

Monday, June 22, 2009

Physical Changes

I've written a lot about the mental changes, but as the body ages, it continues to deteriorate, and not just mentally.

I don't mean this to sound like a whine, okay, but you've read my notes about the embedded kidney stone, and the rheumatoid arthritis, right?

Well, now my neck's getting stiff (I thought it was a transient side effect from the lumbar puncture) and my primary care doc tells me it's a worsening of the arthritis.

Okay, fine. I can deal with that too, but give me chance to at least "catch up", okay????

What I am trying to convey to you is that it isn't only the Alzheimer's which needs to be considered in us so-called "Senior Citizens", it is the body as well.

I am hoping that the upcoming changes in our nation's health-care system will help to alleviate that problem, but I do not see how it can without raising taxes, OR "robbing Peter to pay Paul".

Some good news: I recently began riding my road bike, (The "Dallas to Dallas" Trek 1000) again, and I'm feeling really good about that. I love being out in the open air and almost getting hit by 18 Wheelers as I ride down the highway! *LOL*

Hell, I've got Alzheimer's!

What worse thing could happen?

Y'all have got to permit me my "Gallows Humor"! Otherwise I'll never make it!

"Once more into the breach, dear friends!"

(Well a lot more, actually, if you want to help my Paulding Humane Society! )



I have a song for you. You can hear and see it if you click on the title of this blog.

I saw it the other night on television and it reminded me that I am a "friend" to all kinds of music. No special meaning, just click and enjoy, okay?

Thanks

Bill

Sunday, June 21, 2009

Happy Father's Day To All The Dads!

Short and sweet (we're busy moving some stuff) so here's a "fitting" musical tribute.

(Sorry, YouTube won't let me embed this one. Click the title above)

Paulding Humane has dropped to 13th place state-wide. Please remember to click to feed and vote!

Thanks

Bill

The Animal Rescue Site

Friday, June 19, 2009

My Father's Bookshelf : An Alzheimer's Comedy

Thanks to my Alzheimer's counsellor Suzette for sending me the information of this upcoming play at the Guthrie Theatre in Minneapolis!

You can click on the title to have a look at the site and find out about the performance.

My philosophy with this blog has always been to keep a sense of humor about what is going on with me, and I think something like this play would be right up my alley.

It is for this reason that I hope I can see a local performance here in Atlanta, and I also hope the publication/production rights will be released soon, so the plays can be produced locally by small "community theatres". I also hope the proceeds from any and all performances will go right back into AD Research!

I think this would be an awesome educational tool for those who aren't sure what they're hearing when told someone has "Early" or "Young" Onset AD.

Those of you who are following this blog (and BTW, WELCOME "foodhoe" ! Our 27th blog follower! Hope you get some laughs out of it, and I LOVE that nickname!) know that I have had a real problem with the "confusion" that exists regarding AD, and what people "think" it is versus what it "really" is and means, so this would go a long away in making me "shut up about it, already, B!~" *LOL*

I have to also admit that I would dearly love to act in this play myself.

I used to be a member of the Carroll County Community Theatre group (one of the founding members, actually), and I have missed acting a great deal.

Along with this blog and my beloved World of Warcraft, I believe it would be great therapy for me.

With the help of you - my good friends and all that "busy work", I think I "shall not go gently into that good night".

I'll go kickin' and screamin'!

Thanks for reading, thanks for thinking about me and keeping me and the other AD patients in your prayers, and thanks for remembering the "critters". I was outside for a while today, and this Georgia heat is so oppressive! Just imagine what it must be a like for a dog or cat on their own, foraging for food? We have GOT to get a handle on animal/unwanted pet overpopulation!

The Animal Rescue Site


Remember, don't just click to feed. Come back and click to support Paulding Humane Society in the "Shelter Challenge" at the top of the page.

I don't have to tell you, that you will all be severely punished by The Blue Meanies, if you are caught tapping your toes, smiling or singing along to the following tune!

YOU HAVE BEEN WARNED! *S*

Love,

Bill

Thursday, June 18, 2009

Neuro-Psych Testing Today Part Deux: "Bro Can't Hang!"

Oh, God, y'all! I am wore slap-out! *LOL*

Got there at 8:3o this morning and met with Dr. Ann Sollinger, PhD for a preliminary interview. She asked the questions that decided if this would be a short or all-day session. I found her very professional and empathetic. There were times when I didn't trust myself to speak, and she waited while I "pulled myself together", and I appreciated that so much. I was so apprehensive about the testing that I didn't sleep at all last night, and I know I looked a mess, but she put me so at ease with her quiet manner, that I soon settled right in. I know I'm in good hands!

At 9, my administrator Ashley walked in, took out my brain, examined it, asked it a lot of questions, and then re-inserted it, devoid of any delusions of grandeur I might have ever had of being a genius.

I will recount here what I remember of that we did those 6 hours. (It won't be much, I promise!)

1. I was shown some diagrams and asked to reproduce them on a sheet of paper. I think I did okay.....

2. I was told two stories with a lot of details and then he asked me to repeat as much as I remembered of those details (and that we'd come back to those stories at a future time, when he would ask me again.). I think I did okay on those, although I did forget some salient details.

3. Math: I sucked at even the basic stuff: "Joe bought a sports coat for 60 dollars, which was marked down 15%. What was the original price?"

Damifino!

A family travels 215 miles in 5 and a half hours. What was their rate of speed?

Ditto!

4. Vocabulary: (Meanings of words). Aced that one

5. How are these things alike?

a) Work and Play?

Bill: "They're not alike".

Ashley: "Try again".

Bill: "They're both activities?"

Ashley: "That's right."

Bill: (to himself) "WTF?"

b) Democracy and Monarchy:

Bill: "They're two separate things!"

Ashley: "Try again."

Bill: "Okay, they both have one "head of state?"

Ashley: "Correct."

Bill: (to himself again) "Was in der FRIGG????"


c) Friend and Enemy:

Bill: "They're both people!"

Ashley: "Correct!"

Bill: "Huh???"

6. Name these things in the pictures.

Aced that one

7. Name as many of these in each category (Fruits, Vegetables, Animals) as you can in a minute.

Bill: (trying to go through the alphabet) Got maybe 10 in each category.

8. Flash Cards: With this one, he told me he couldn't explain what I was supposed to do - I'd need to figure it out myself.

He put four cards in front of me in red, yellow, blue and green with different shapes and I was supposed to put the next card he dealt me under the card that most closely fit where I thought it should go.

I got maybe 35% of those right, and we did it twice.

The last part of the testing (there was more - I just cannot remember all of it!) consisted of 560 computer questions about my personality and stuff. (Which we all already know is frigged beyond repair, right? *S*)

So, God, I'm wore out, Kiddos!

Ashley was great! He let me go pee when I needed to, and he even brought me a Diet Pepsi when I was falling asleep at the computer answering all those questions. He could not have been nicer to me, and PLUS..... he was impressed when I was able to tell him who wrote "Faust" (It was Göthe, of course).

He said I was only the second person he'd ever tested who knew that, and then I told him I was half-German! *LOL*

So what's left of me and my brain at 7:19 pm on a Thursday evening in Dallas, Georgia?

ZILCH! How about a little Monkees Techno tonight?

Kudos to you if you recognize the genre of music this song represents?

Think "Bach". Think "Row, Row, Row Your Boat"!

Lyrics are below the vid!

The Animal Rescue Site








Peter:
Zilch,
Mr. Dobolina, Mr. Bob Dobolina,
Mr. Dobolina, Mr. Bob Dobolina, etc...

Davy:
Zilch,
China clipper calling Alameda,
China clipper calling Alameda, etc...

Micky:
Zilch,

Never mind the furthermore, the plea is self defense,
Never mind the furthermore, the plea is self defense, etc...

Mike:
Zilch,

It is of my opinion that the people are intending,
It is of my opinion that the people are intending, etc...
Zilch, zilch, zilch.

Thanks and I should know in 2 weeks how demented I am!

Love

Bill

Finally! Neuro-Psychological Testing Today!

Yep, it's finally happening - after 4 months of postponements and re-scheduling - I go to the Wesley Woods Neurological Center this morning in about 4 hours.

I have mixed emotions about this.

On the one hand, I am happy to finally get tested, but on the other I am afraid of the outcome (what stage I am actually in, as compared to the rest of the nation who have been diagnosed with AD).

It's also a huge step in getting my Social Security Disability Income started.

That's a whole other headache in itself, as anyone who's ever applied for it can tell you. This is why they have SSDI lawyers who take your case on contigency once you are turned down the first time.

I have a law firm already in place and waiting.

So this will be a two-part entry. I will write again once I get home from the hospital.

Thanks

Bill

The Animal Rescue Site

Tuesday, June 16, 2009

Alzheimer's And What It Destroys

It doesn't only wear away the individual's Psyche, it also works on that of those around him/her.

Friends and loved ones are constantly having to "adjust", to "re-track" and sometimes they are caught unaware, when we suddenly "tune them out". Sometimes in mid-sentence.

Bless them, they suddenly just look at each other and just....wait..... for the re-connect.

Sometimes it comes, and sometimes the subject just gets put on another "track" and "they" have to re-adjust.

I know this, because D has told me that it has happened with me.

I can be sitting, eating dinner, and all of a sudden stare into nothingness.

I keep having to ask for peoples' patience because my short-term memory sucks so bad.

One example: My bicycle. I recently forgot how to put air into my road-tires, so I had to take the Trek 100o Road Bike to the local bike shop.

Alan took one look at me, one look at the bike I was bringing him, another look at the computer on the handlebars (which showed over 7 thousand miles), and got this really weird look on his face: a WTF? look!

So I had to explain.

Again.

So he came back with the old "CRS" joke:

"Can't Remember Shit"

Remember that one, friends and neighbors?

He tried his best to empathize, but he wasn't in the same "place" as me, so I just nodded and grinned, like I'm s'posed to.

They try, don't they, bless 'em?

And THAT is why I say we are CONFUSING them!

ALL they know about Alzheimer's Disease is that we suddenly lose control of our minds and our bodily functions!

A challenge to the Alzheimer's Association: Do a friggin' Survey and see what people know about the disease!

GO TO THE PEOPLE!

And then let's start over.

Without all the "Gobbledygook".

In these troubled economic times, we're asking a hell of a lot of people to understand all the different types of dementia and where to "classify" them!

We HAVE to "break it down" for them!

We must ask ourselves: "What is it we want the public to accept?"

And to do that, we HAVE to go THEM to find out what it is they "think" they "know"

You CANNOT make me BELIEVE that "John Q Public" understands Alzheimer's Disease other than what he's heard on the news or in jokes.

We HAVE to re-group!

Thanks and please remember the "fur-babies"?

The Animal Rescue Site




Keep a "Candle In The Window" for me, please?

Thanks and much Love!

Bill

Sunday, June 14, 2009

Who Are You? Chapter 4:"More High Jinx"

There was very little "continuity" in my young life.

I had a "here and gone again" Dad, and a mother who did the best she could to raise me though she was very ill (anemic) much of the time.

Let me write as much as I know about my Mom, so you can get to know her better too, okay, because to know me you are going to need to know her, since she and I were pretty much alone and inseparable during those years.

At age 14 Anita ran away from home along with her sister Johanna. These were the WWII years and they ran from East to West Germany, where they both went to work in a munitions factory making bombs.

Why did they run away from home? They were two of 10 children born to Willi and Helene Kühn (pronounce it "Q-en", 'cause you can't make that fluted noise which produces the ü umlaut) and my German grandfather ("Opa") was a tyrant who stayed drunk when he wasn't working in the coal mines of Zeitz, East Germany.

I found out in my adult years that my Opa Willi also escaped to the West, but not for the same reasons that my Mom and her sister did. He escaped because he was about to be arrested for brutally beating one of my aunts, Renate ("Re-nah-tuh"). The "story" which was told me, was that my Oma and Opa were separated by the Berlin Wall, and it wasn't until I was 45 that I found out otherwise.

So, I'll take you quickly back to Chapter 3 during which time I lived with my Oma, and there was no Opa - and that is why: he had hit the "dusty trail", the coward.

Here's my Opa. He is in uniform because even though they were civilians, miners were treated as military:





Follow me closely now, dear Reader, because you and I are about to enter some very murky and fog-surrounded water. That means what I remember is going to come in "fits and starts", as it were, but I will do my best to guide you through.

You should also know (as do I) that we are "out of sequence" and that you're walking though a "rough draft" with me. That can't be helped, unfortunately, because I never know from one day to the next what I will remember. I suppose this will all be re-structured later.....

World War II ended officially on August 8th, 1945, which means Anita and Johanna were in the West at that time, since I was born 4 years later, and that means she met my Dad sometime during those years. It also means she was 25 years of age when she had me. My dad was 32.

One of my prize possessions is a letter Anita wrote to her future mother and father in law about her "Billy" (as she called him in those days), how much she loved him and how much she looked forward to living in "Amerika" and raising a family.

That letter is in my safe deposit box as I write this, but I am going to scan and share a part of it with you, Dear Reader, stay tuned.

Not so much for what the the words say, but how they were written!
My mother had exquisite penmanship, and it is very evident in her style of writing. It must have taken her hours to write that letter to the "Promised Land".

She, too, was very creative with her words and her imagination, and I know she passed that trait on to me.

This is a picture of my Mother at 18.......



And here's my aunt Johanna, holding yours truly:



Here's the beautiful Christa (known by all her devotees as "Die Schwartze Rose" (Dee Schwart-tsah Rosah - "The Black Rose") whose escapades were mentioned in Chapter 3.



And here's my Dad:



So?

Are you getting the notion that the cute little bundle Johanna is holding would in just a few short years turn into a beggar, a thief and a pimp?

You'd be right, and we might as well add one more name to the list: Bastard.

Yes, I was born "out of wedlock" as were many children during those post-war years.

I will write more about this in a later chapter, but I remembered being quite indignant at not being invited to my parent's wedding!

I suspect once you finish with this chronicle, you, Dear Reader, are going to say to yourself, "Well, shit! No wonder he turned out like this!"

And I suspect you'd be right.

Here's a tune I remembered being played a lot in those days. Kinda fits, dont you think?



And I'm still "pimpin'" fer the critters! Remembet to click to feed and then click to vote (enter Paulding Humane in the recipients' box, Georgia as the state, and then vote. Gotta write that animal's name in the box to confirm as well, okay?

The Animal Rescue Site


Thanks and have a great week!

Bill

"What's WRONG With You? You Got Alzheimer's??"

I caught that line of dialogue in Clint Eastwood's latest film, Gran Torino, and while it didn't upset me all that much, it did bring home the fact that however it's used, it's now a very prevalent part of our vocabulary.

I suppose it isn't really meant as an insult, and would only be said to someone close, but I can't see the name of another disease being used in its place, can you?

Oh, I know we'll use words teasingly, as in "You're such a spaz!" (spastic) or "What a Maroon!" (moron), but I don't think we'd ever hear something like, "What's the matter with you???? You got Multiple Sclerosis, or somethin'?"

So I guess the answer to the above question would be, "Yes, matter of fact, I have. Let me tell you about it!"

At that point, one of three things could happen:

1. The person one is conversing with would break out in a short, barking laugh, which will turn into a shocked look when one doesn't smile or laugh back, or

2. Their eyes will begin to glaze over as you try to explain the difference between "Early Onset" and "Young Onset" and the stages.

And there's that third thing, the one which angers those of us being treated for EOAD: Disbelief because we're not drooling or soiling ourselves. Disbelief because we can still communicate. Disbelief because, well hell, it's just easier to deal with that way!

Yes, I know: you're read this before on this blog, haven't you?

You've read my words when I tried to explain we may be confusing the lay-person with too much information, but what if it were cancer I/we have? It would be just as fatal, and just as deserving of finding a cure.

Is the difference really as simple as people try to make it: One is a disease of the mind, the other is mainly associated with physical causes? My friend Mike Donohue addresses this in one of his blog entries:

6/4/2009

I AM TIRED OF HEARING, “YOU ARE SO SHARP, YOU CAN’T HAVE IT!”

I am sharp because I am in the Early Stage of Alzheimer’s Disease (AD)! That’s the way we are. This is normal for Early Stage. When you say “You can’t have it” Though you mean well, you feel you are re-assuring us we don’t come off as bad as People with AD are supposed to look, you have to know what a put down it is.

The common misperception about people with AD is this: If you have AD you must be drooling, standing in the corner unable to find you directions out of it. Because this biased perception of what we are we are often outcasts or patronized. Please help us overcome the public stereotype of what we are supposed to be! Certainly, those of is in the Early Stage of this disease do not show it. We come off as being very normal, able to think, do a lot of remembering, find our directions, carry on a conversation and do everything else we could before we got it.

The only change is this: We have some limitations. Because of these the Health Care Folks can tell us, yes we have it, yes it will get worse, yes it will ultimately cause you to die. You can hold it off from becoming worse if you Take Mediation, Eat Right, Exercise Daily and engage in Social, Creative and Intellectually Stimulating Activity, this will prolong your stay in the Early Stage.

The put down of telling us we can’t have it is this:

• I have gone through the heart wrench of being diagnosed with it. • I have had to deal with the absolute shift in who and what I am because of it.

• I have had to accept the tragedy of what it does now and will in the future visit on my family and loved ones.

• I have had to learn to live with the ultimatum this diagnosis serves. “You have a terminal disease, one in which you mind goes by degrees followed by your body inching its way to death that is the absolute end result.

• I will suffer this emasculation: While I have it I will need to depend on others more and more, I cannot now do everything else without the help of a caregiver, which will become more and more of a need as I progress to conscious oblivion, helplessness and death.

This is no exaggeration! Thank God I come off as good as I do. I still have a quality of life that I cherish and want to prolong.

To do this I need you to:

• Love me, love me a lot I am suffering and I need your support! Accept me as I am. Trust me, I do have this awful disease, I do not want it but am trying to make the best of it. Please don’t make it harder for me by discounting it or denying it!

• Spend time with me. I love social time, activity and the camaraderie of friends and family. I love to do things. I will be a little different, particularly as time goes by. I try to work around it, overlook it when I slip. Above all make a place for me in your lives. I need it more than I ever did.

• Tell everyone you know I have this disease and I do pretty doggone well with it. We suffer a stigma because of our disease. We are with it, with you and want to do things, like volunteer, be in organizations, and participate in everything as a normal person. We do not want to be left on the shelf or put into a warehouse as too often a day care, assisted living or nursing home has become to be for us.

With your acceptance we are more likely to get the kind of help we need, like Eating Right, Daily Exercise and having available Social, Creative and Intellectually Stimulating Activity, both organized and self provided, which along with the medication we have available will prolong us in the Early Stage.

If this can be made to happen this improves our quality of life that has been so damaged by our diagnosis. It truly assists our families and care givers because we can continue helping ourselves longer. It greatly benefits the community and the country because it will be longer before the expense of outside help or institutionalization is needed.

Mike Donohue

My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

So what are we expected to do?

Many of us have anger issues, many of us have short-term memory loss, many of us can no longer drive because of judgement issues, and all of us are behind the 8-ball when it comes to getting assistance or money for research.

Would drooling, shitting and pissing ourselves help move things along?

Sorry for the sarcasm. I know I wield it like a sword, but I passed "denial" a while back. It seems to me that much of the nation is still in that phase, and there's something very wrong with that picture when you consider that an Alzheimer's Diagnosis is made every 70 seconds.

Okay, gonna leave you with some toe-tappin' music. I fell in love with Zydeco when I first heard it on Paul Simon's Graceland album, and while this isn't Zydeco, it just as happy a genre. It is called Tejano, and "Sir" Doug Sahm was one of its founders. In the second and third videos, you may recognize the lead guitar being played by the late Freddy Fender.

Remember the critters, please!

Thanks

Bill

The Animal Rescue Site














Saturday, June 13, 2009

Y'all Have A Wonderful Weekend!

I have a very busy week coming up, with lots of appointments, testing, etc., so I'm going to kick back and relax with my in-laws at West Point Lake, to rest up.

Last week wasn't too spectacular, and I needed a little extra help from my EOAD Association friends, and BeckyP sent me this clip - which pretty much says it all, thank you, Becky.



As I am sure y'all are aware, I can be counted on to provide some "food for thought" every now and then, so I'll be back "when the week is new.....and I'll have more ideas for you" (love you, Fred Rogers!), and we'll continue the "Saga of Billy The Kid - German Style", as well.

Thanks, and don't forget the critters!

Bill

The Animal Rescue Site

Thursday, June 11, 2009

Mike Donohue's Report On A Recent EOAD Conference

My friend, Mike Donohue, has "guest-blogged" here before, and I have obtained his permission to reprint a blog entry of his from earlier this month.

Mike is 100% more articulate and eloquent than me, and I like his attitude so much that I have asked future permission to include his writings here.

He has graciously consented, and here is his report from the conference:


Conference in Washington DC
6/4/2009

My wife Diane and I, on June 3, 2009, participated in a panel to address the specific needs of Early Stage AD in Washington D.C., at a conference conducted by the Alzheimer’s Association and the Federal Administration on Aging (AoA).

The panel consisted of three AD Afflicted persons and their Caregivers. The three with AD were members of the National Alzheimer’s Association Advisory Board. They were Susan Pointer, Monroe LA, and her daughter; Karen Zimmerman, Fairfax County VA, and her husband; and Diane and me, Minneapolis, MN.

It was an honor to be able to personally present our views and opinions of the special needs of those of us in Early Stage AD and our caregivers. It was also a wonderful opportunity to say directly that which too often is filtered through the views of third parties reporting what they believe we need.

The panel was moderated by a wonderful person, Lisa Gwyther, who is the Director of Research at Duke Bryant Alzheimer’s Research Center, Durham, N.C. There were around 100 attendees were from all over the U.S., National Alzheimer’s Association as well as local chapters and representatives of AoA. The folks involved have been charged with investigating the special needs of those affected by Early Stage AD. As such it was just a fantastic opportunity to be heard.

We urged many programs some of which were:

The significant need of education for the following:

To overcome the stereotype of any person with AD being one who is unable to take care of her/him self and is evidently confused and demented. The public needs to know Early Stage Normal is looking and acting like everyone else. It is being functional and able to take care of ones self, productive, needing yet to be part of the main stream.

Early Onset Alzheimer’s Disease (EOAD) needs more attention than it gets. The public needs to know it is different than the ordinary concept of it is an old person’s disease. It can and does strike young people, forty, fifty, and sixty, in their prime. It removes the person from the work force and leaves families adrift. It is a calamity that needs special attention because of its tragic personal and community impact.

If persons in Early Stage AD (ESAD) and Early Onset AD (EOAD) get the kind of help that is needed they have a far better chance of prolonging their time in Early Stage. This makes a distinct contribution to their quality of life and that of their families and loved ones. It makes the same contribution to the community in saving the cost of care required by the later stages of this dread disease.

AD in its Early Stage is not as some commercials portray. (Aricept’s commercial were cited as an example). Commercials often show a person with AD in need of medication is already significantly confused and limited. Medication is needed to prolong Early Stage while those of us in it are functional and not as depicted in this and other commercials. The commercials like this feed the stereotype of people with the disease as baffled and incapacitated.

This led into a discussion of the value of the 10 Warning Signs supporting the proposition of Early Detection Matters and the Principles for a Dignified Diagnosis both of which have been recently adopted and promulgated by the National Alzheimer’s Association.

Early Diagnosis is of benefit to both the patient, their loved ones and the community at large. It gets help sooner and secures a better quality of life longer for those affected. It also saves on Cost of Care in the long run.

A Dignified Diagnosis respects the dignity of the person afflicted with AD. It also circumvents the other stereotype that is often the special province of the Health Care Community which can be reluctant to hang the stigma of a diagnosis on a person because of what that person faces in society with the diagnosis. In these cases more often than not treatment is not provided when it can do the most good. It comes when a person is evidently afflicted often in the mid or late stages when little more than keeping the patient comfortable, distracted and subdued can be provided.
Five critical needs by people affected by Early Stage Alzheimer’s Disease were presented:

First Stop Programs: A Place where patients just diagnosed can come and learn how they and their families can deal with AD from those of us with it.
Support Groups: A Place where Early Stagers agree to attend with regularity and be open to the public designed for Early Stage offering support, camaraderie, and encouragement.

Creative Programs: For persons in Early Stage structured so that they are social, creative and intellectually stimulating such as to capture a person still functional and in need of more than the distraction afforded by most day care programs.

Volunteer Coordination: A central source to find volunteer opportunities for Early Stage AD where they can be directed to do volunteer work in the range of their respective ability.

Structured Wage Earning Workgroups: Sheltered Workshops for Early Onset AD’s to provide both work and wage when they have lost their jobs, their dignity and still need gainful employment.

There is a growing body of evidence that says that a regime in addition to medication can help delay the progression of the disease consisting of:

Daily Exercise
Eating Right
Social Interactions, Creative and Intellectually Stimulating Activities

With the coming escalating incidence of AD occasioned by the growing numbers of Baby Boomers coming of Senior Age and folks living longer there is likely to be a catastrophic burden placed on Health Care and the overall Cost of Care.

Finding a Cure is possible but needs time for discovery. The increase in Care of Early Stage will help to buy that time and save the intolerable expense of not doing it.

The presentation ended with a plea for help made to the people in attendance and the public at large to give those of us in Early Stage affected by AD more help designed to prolong our stay in Early Stage. We are competent and able to do a good deal of the work but we absolutely need the assistance and the organizational skills of the Care Community.

Mike Donohue
My Blog: AGING WITH GRACE http://im-mike.blogspot.com/

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Please also visit Mike's Blog, and come read our posts on the www.alzheimers.org message board. If you know of someone or care for someone with AD, there is a wealth of information there for you.

The Animal Rescue Site


A friend who follows the blog asked why I never feature any Georgia Rock?

This corrects that mistake. The Atlanta Rhythm Section playing "Doraville".



Thanks!

Bill

Wednesday, June 10, 2009

Y'all Ready For Some MORE Pictures? :)



This is the Methodist Church where Dondra and I were married. It's very small and could almost be considered a chapel. Small membership too, but ya know what? THAT is just fine with the "German Boy"! I LOVE small churches.



This one is at the altar, and were my knees a'knockin? Yeah, they were!



I plan to add more ASAP, but I'm having difficulty with PICASA, since they are copyrighted, and it will only let me save certain ones to MY PICTURES, sorry!



Remember to click to feed and click to vote, please?

I haven't given up, even though I think THEY have. I still think we can do this so let's do it! :) Just checked and Paulding Humane has now dropped to #12 in our state, so if you know someone who doesn't know about clicking and voting, please tell 'em okay? Also remember that every time you click the ad box PHS and Alzheimer's Research share in the proceeds! :)

The Animal Rescue Site


Thanks for your visit! I love y'all! Enjoy this pretty song!

Sunday, June 7, 2009

Wo Are You? Chapter 3 Follow-Up

Okay, before y'all think of me as Jack Dawkins, The Artful Dodger in "Oliver", let me clarify a few things:

1. My uncles and I never stole for re-sale. We only stole food, and only if we had to, okay, because there were times when we didn't have to and there was plenty to eat.

The law of averages will catch up with a thief sooner or later, right?

2. We never conned anyone out of anything. Didn't have to - times were tough all the way around in Communist-Occupied East Germany, and no one had anything to be conned out of them anyway.

In short, we asked first (begged, as I wrote) and then did what we needed to do.

3. Did we know it was wrong?

Well hell YEAH we did! And we also got caught! Mostly stealing eggs out of a farmer's hen house or cabbages and asparagus from his fields.

Were we arrested?

No, there wouldn't have been room to hold us all, since it was so prevalent in those times.

What did happen is that the "victim" had the right to conscript us into service as farm-hands (sometimes every day for a week - sometimes as long as a month), but that wasn't really a bad thing: We were fed three hot meals a day and were given food to take home as well.

Things had a way of working out.

4. Did my Oma know we were stealing food?

Yeah, of course she did, but she never mentioned it, and just found it on the table and cooked it for us - "The Good Lord Will Provide" - kinda thing.

5. Were we happy living that way?

We sure weren't all tore up over it, so I guess we were - me and my 4 uncles (and Christa - who had her own way of obtaining things - *wink-wink*, *nudge-nudge*, *say no more*.)

Yes, me and my uncles and aunt and Oma had some happy times together, even amidst all the poverty. We never had much, you see, so we didn't miss it.

I still remember the first time I ever drank a Coca-Cola.

One of Christa's many boyfriends (Russian soldiers), brought us all one bottle, and we all took turns passing it around!

Oh. My. God. I had never in my life tasted anything so sweet and good, and that feeling has stayed with me into my adult years. To this day, I love drinking Coca-Cola out of those little swirly-shaped bottles. I close my eyes and remember that very first time, and I just throw my head back and drink - knowing there'll be more where that came from and I won't have to beg for it.

6. "The Biggie" - If I had to, would I do it again?

The Answer: I hope I wouldn't have to, but yep, damn right I would. I didn't lose those skills, you know. ;) (and I never grew up!)


Here's Jack and Company:




The Animal Rescue Site


Thanks and enjoy your day!

Bill

Friday, June 5, 2009

Who Are You: Chapter 3 - The "Inbetween Times"

First of all, permit me an OMG, because this blog just picked up another follower: "Rockie", right? THANKS!

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Okay, just to re-cap: I was born in 1949 to a German mother and an American (soldier) father.

With me so far, right?

Okay, here we go with a "mish-mash" of what I remember of my "growing up" years in Germany.

First off, we travelled a lot.

My Dad (because of the job he had in the Army) kept getting re-assigned, and sometimes me and my Mom could go, but sometimes we couldn't.

One of those times, (before my brother was born) my mother got really sick. I think it was a kind of pneumonia, but in those years, pneumonia could really kick your ass, and that is what happened to her. It really laid her out, and because my Dad was so busy, it was decided that I go to my Oma's (German slang for "Grandmother") for a while. I was 8 then.

My Oma lived in Zeitz, East Germany (which used to be known as the DDR, because it was on the "other side" of the Berlin Wall....) in those days, and she was poor, my friends. My Oma Helene needed another mouth to feed like she needed a hole in her head.

She already had 6 children and no husband (I'll talk about him later) and now she was getting me to take care of.

I remember my Oma as such a diminutive woman - so tiny, yet so strong!

For a meager wage, she scrubbed down the bakery next door to the courtyard we lived in. On her hands and knees. And when I say "on her hands and knees" I mean just that!

As a "perk". my Omi would get to take home that day's unsold rolls (known to us as "Weck") and occasionally, such delicacies as "Quark-Taschen", which I can only suggest to you as "Danisches" only a thousand times better-tasting.

Here is how dinner at my Omi's went:

Ready? This isn't going to be pretty.....

All of us kids went out to beg for whatever we could get.

If we couldn't beg for it, we'd steal it (more about that later, as well).

The Russian soldiers (East Germany, remember?) treated us kids very well, and always handed us bread ("Kleb") through the fence whenever we showed up.

Then came the pig.

Pork was "cheap eatin'" in those days, and we ate everything from the "squeal to the tail". My personal favorite were the feet.

But wait... there's more!

When I wrote "from the squeal to the tail", I didn't mean we just ate the meat!

Oh, no! We sucked the marrow out of the bones as well.

If we had an apple for desert, that apple got cut up into pieces and when we finished with that bad boy, all that was left were those seeds.

And yes, they did get planted.

I got the measles while with my Oma, and a Russian doctor took care of me, in return for my aunt Christa sleeping with him. I remember him coming to the "apartment" in the courtyard and them both going into a "private" room together.

We did what we needed to, to survive.

Then when the sun went down, we went to bed. There was no electricity. We could not afford it - so "dark", meant "bed".

It also meant rats.

I had to get used to them crawling across my chest, sweeping them off and cowering under my blanket in fear. I squeezed my eyes shut tight and waited for morning.

By now, you must be asking yourselves, "What about your Dad, Bill?"

My Dad (God love him) was just never "around" when he needed to be. His life was the Army and me and my Mom just got in the way of all that.

Caveat: At that time. When we moved to the US in 1960, he took his role as a father much more seriously.

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More to come. Stay with me, okay?

Don't forget the animals! Click to feed and then please click to vote!

Here's the link:

The Animal Rescue Site


And here's a song from my childhood:



I love you little shits! HA!

Bill

Tuesday, June 2, 2009

Wedding Pics......

...... are still coming, kids. My niece Deirdre is putting them together into a very special place on the net, and when she gets them done, we will post a link there.

Meanwhile, let me just give you a quick update on that day and what all happened:

1. Forgot how to tie a Windsor knot in my tie, and had to ask for help

2. Had to pee, forgot to zip, and almost walked down the aisle that way, had it not been for my Sis-In-law.

3. Reunited with my best friend from High School after 15 years of not having any contact.

I am very excited because he, in the meantime, has become a very successful performer of his own Christian music, and he's invited me into his home studio to play and perhaps to record with him.

I am currently in the process of getting my fingers "calloused-up" by playing my accoustic-electric again and practicing my voice lessons. I also offered him my services as a drummer, so I'll be able to get my Pearls out of the closet again as well!

Other Updates

1. In the "Shelter Challenge", Paulding Humane Society is still at number 11, and we haven't budged from there in weeks now, so please remember to click to feed and click to vote - every day, thanks.

Here's the link:

The Animal Rescue Site


2. This blog has 25 followers now, with many international friends taking a look. THANK YOU!. Please remember also that every click on that ad box you see, results in a 50-50 split between Alzheimer's Association and Paulding Humane once we get to $100.00. At that time, I will ask for a check and I will disburse the amounts as promised, from my personal account. I will also post a copy of each check here, so that y'all can see where that 2 cents went! *LOL*

3. My neuro-psych testing is now scheduled for June 18. This is the test originally scheduled last February which kept getting postponed/re-scheduled, and is my way of getting a "baseline" just to see where my dementia falls as compared with the rest of Alzheimer's patients nationwide.

Here's a pretty song to mark a wonderful occasion last Saturday. I will apologize for the occasional hiccups, but it was the only version I could find.

Dondra and I send our love



Thanks

Bill