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Showing posts from December, 2008

Guess Who's 59 Today?

Yes, those ARE The Beatles singing Happy Birthday to me! (And to you, if it's yours!) And here are my boys again...... Be sure to catch my main drummer man Ringo coolin' it! Love you guys! Bill

Right String? Wrong Yo-Yo?

Turn this one up a tad, too, okay? Ever felt like that? Like you're where you're supposed to be, but don't know what you're supposed to be doing there??? That's my life, and I feel like I am losing direction of it and the only thing that keeps me hanging on is that I think I am still of some use. So here's my New Year's wish for you from me and Harry: And Harry? "Keep The Change" HA! CIRCLE

Some Exciting Alzheimer News!

(Turn it up a notch! :)) Take a look: * http://www.sciencedaily.com/releases/2008/12/081224215704 *Thanks to my friend Tuckerfan on SDMB for that link! Okay - so we're still a ways away from curing this shitty disease, but it's heartening to know that research continues, right? Some personal issues: 1. A couple of days ago, while entering my adress on an on-line order form, I forgot where I live (the address. Couldn't come up with it to save my life). So what did I do? I went to my auto-pay bank site where I knew I had my rent payment entered and found my street name "Foster Avenue". "Foster" being a part of the name of the apartment complex I live in: Foster Place Apartments . Now, I have to pat myself on the back for knowing how to solve that little problem. See, I didn't just give up and ask my next door neighbor (who doesn't know about this), but I figured it out on my own! 2. Forgetting to take my meds. Tonight I forgot to put on my Exelon

Christmas 2008

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Well, what can I can I tell ya'? As planned, Julian spent Sunday through Wednesday with me, and I had a great time spoiling him rotten even before we celebrated Christmas on Wednesday the 23rd. His grandmother (my ex) was also there, and we had fun with the film Polar Express which we stopped for gift exchanges at the point where Santa awarded the "first gift of Christmas" and then resumed. Julian was the "gift-distributor" and we made some pictures - three of which are included here. I will post more at a later time. Picture 1 is Bill and Julian playing a Christmas carol on the new kid-sized guitar he got from me and Santa. Picture 2 is Julian with his stockie. Picture 3 is "Bob". Bob is a knight metal sculpture I saw listed on Craig'sList and just had to have , so Bob is my present to myself. One person was a no-show during this, my favorite time of year, but this was not totally unexpected since she took a hike (or should I say "left skid-m

Happy Holidays To ALL My Friends

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Beginning today, I want to take a break from the blogging to spend time with my grandson Julian, who is coming to spend the first part of the week with me. You met Julian in a prior blog entry entitled "Julian William Craig Loves Me......." (Please scroll down in the list to see his picture once more) Before I leave, I wanted to share with you how very much it has meant to me that y'all are following the blog and I hope it has been of some interest both with the personal insights into Alzheimer Disease and the information I have included. I feel very fortunate indeed to have friends such as you, many whom I don't know personally, but through www.alz.org , e-mails, this blog, and the message board The Straight Dope . Your words of encouragement and support have kept me strong and positive during what has been an interesting three months, to be sure. Yes, I was bitter, and yes I was in denial, but now I am at war with this disease and I very much plan to come out the vi

Beware Of Bogus Alzheimer Treatments

Yesterday I posted about stem cell research as a means of treating Alzheimer Disease. Today, I thought to myself, "Well, they tried it with cancer and AIDS, why not with AD?" http://health.usnews.com/articles/health/healthday/2008/12/03/bogus-stem-cell-therapies-sold-on-internet.html Take a look at this : http://tampabay.com/news/aging/article879333.ece Here you have a medical doctor treating her husband with coconut oil, and it seems to be working . So how do you know what will work for you, if you have AD? You don't. You put your faith in your neurologist and hope that what he prescribes you works long enough to tide you over until such time as a cure is found. I myself am using the coconut oil, but I cannot say for sure that it is working for me, and that means it may not work for everyone . My friend Tom, who also has Early Onset says it works, and that's great for Tom, but because I am still having "episodes" I cannot yet make that claim. Hell, even a p

What Was the Last Disease Cured?

Are you thinking polio in the late 1950's? If so, you're wrong. It's smallpox, and it has the distinction of being the first human infectious disease completely eradicated (according to the World Health Organization in 1979 ). The last known case being in Somalia in 1977. Polio, on the other hand, is still out there. As late as 2005, there were 105 confirmed cases discovered to have spread from Nigeria to the Sudan. This latest outbreak illustrates "the high risk posed to polio-free areas by the continuing epidemic in west and central Africa" (WER, 80 (1), 2005, p.2). But that's not my point. I am not a conspiracy theorist by any means, but doesn't it seem a little odd to you that in a century where we can create stem cells, isolate someone's DNA and clone animals, we can't seem to find a cure for not only Alzheimer Disease, but muscular dystrophy, MS and cancer???? And doesn't it irritate you just a little bit when you read something like t

Peter Pan Syndrome And Alzheimer Disease?

WHAT ??? Okay, this is going to take some 'splainin': See, a long time ago, I was being seen by a counsellor who told me I had "Peter Pan Syndrome", which is a pop-psychological term for men who have never grown up, and which describes me , kinda. My last significant other was many times heard to say, "You are such a baby!!!!!" Me: "That's not a term of endearment, is it?" Or: "That's so juvenile/childish!" Me: "Well, I was someone's child, ya know!" So that describes my behavior and my love for comic books, toy trains and computer games. It also explains why I get along so well with the kids I see in our ER: I just seem to be able to talk to them on their level, I guess. It also explains why I become "sullen" when I don't get my way. I hasten to add that PPS is not accepted medical terminology. It's just a coined phrase used to pigeonhole men like me (and I'm sure there are women who have th

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

...... can turn into an avalanche in a heartbeat as it gathers momentum. What began as an innocent "Devil's Advocate" question on The Straight Dope turned ugly very quickly last night. Rather than write everything from my point of view, I prefer to link you to the debacle so that you may read for yourself what happened. This blog is about what's going on with me and I want it to reflect EVERYTHING in my life, "warts and all". Else, what's the point? Here you go, and the shit hits the fan at post #12 http://boards.straightdope.com/sdmb/showthread.php?t=497840 What is so frightening about that whole episode is that I was so sure I was right that I would have defended my position with whatever it took. What else is frightening is that this was an example of dementia , but it was seen as stupidity, and it saddens me that I apparently stepped on so many toes that my offer of letting another person evaluate the occurance (yes, she's a personal friend) was

Bill On The Drums (With Pictures) And Other Stuff

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Dear Friends, As y'all know, I recently sat in on drums during a concert featuring my friend Peter's band Time-Out , and here are a couple of photographs from that night. That's Peter in the middle with the Santa cap; to his right is Hubert - 1st lead guitar; to Peter's left is Detlef - 2nd lead guitar; way in the back is yours truly whom you cannot see because the seat is so low, but Guenther is the drummer who turned his sticks over to me. I included a picture from earlier that day so you could see me drumming. The song being played is "Knockin' On Heaven's Door" The "Other Stuff" Suzette from the Atlanta chapter of the Alzheimer's Association called me back today (as I knew she would - first impressions are rarely wrong) and informed me that there is an organization called Professional Organizers who will come into one's home and/or office and re-arrange it to be more effective and less-cluttered. I got in touch with Cheryl, of Al

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

As I wrote in the previous entry, I was going to contact the Alzheimer's Association in Atlanta today, but before I picked up the phone, they called me! I spoke with Suzette before my lumbar puncture and she had told me at that time she would be back in touch, but what a great example of synchronicity that she called when I had a need! We spoke about my problems with coping, focusing, stuttering and forgetting, and she listened and heard me! By that, I mean she was supportive and already way ahead of me in the problem-solving department. I have worked with the public for a very long time and I can tell when someone is actually listening or when they're just waiting for their turn to talk with glazed over eyes. Even though we were on the phone I could tell Suzette was absorbing what she was hearing and that made me feel a whole lot better! She knows about this blog and plans to check in from time to time, and she has told me she'd work on getting someone to maybe come

Not A Good Day, Y'all :(

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This is my pal Bert, who always tries to help me have a GOOD day even though he drools like a toothless old man! Oh well, it's just "sugar" right?: Matter of fact, it was a BAD day. Enjoy the video! It made me feel better! The animals always do that for me! Woke up this afternoon, and started doing some stuff (the "Hell-Hole" is in a shambles, and that is highly unusual for me, because I never come back off vacation to a dirty apartment!)such as cleaning, picking up and washing. Because these days my cleaning chores have no rhyme or reason, I tend to jump from one thing to another and basically just move things around a bit with some stuff finding its way into the trash can where it may not need to be. Example: Recently I bought a new computer sound system which came with a $40 mail-in rebate as along as you send a copy of the invoice. Tore the invoice off the side of the box, laid it aside (or so I thought) to take to work with me later and then 5 minutes

Blog Changes and Other Stuff

Hey Y'all may have noticed the "adult-oriented" material bar in the gateway of the blog? I had it there before, but took it down thinking that this site would be visited by only adults anyway, but the more I thought about it, I decided that since my language tends to be a tad "salty", I need to give y'all a choice on whether to "come in" or not because I sure wouldn't want to offend anyone. So for now the bar is up, but if y'all feel like I don't need this "safeguard", then please let me know. There's also a new little feature that lets you "rate" the blog entry. Since I have no one to edit my stuff but me, it would be a big help if y'all could check one of the attributes of the blog that appeals to you. That ad box: Everytime it is clicked on by someone new GOOGLE pays the blogger 2 cents. That isn't a whole lot of money unless a whole lot of people click, but whatever comes in will go to support Alzheim

My First Clinical Trial Questionnaire And Other Stuff

In a previous blog entry, I mentioned the organization called forMemory and that I had sent them an e-mail asking to participate in their study. Well, that questionnaire was in yesterday's mail, so I brought it to work with me so I could fill it out, and I am glad that I have done so, because it revealed a few things about what is going on with me that I had not noticed before. I won't list all of them, but just the most imporatant ones. The questionnaire is bracketed thusly: DO YOU HAVE THIS SYMPTOM? Y/N, APPROXIMATE YEAR NOTICED, IS THE SYMPTOM SEVERE ENOUGH TO INTERFERE WITH DAILY LIFE? Y/N . One symptom I answered "yes" to (which we haven't discussed here) was "Getting lost", and I have for a very long time been "directionally challenged". For example, if I make a right turn at the wrong time, I often cannot visualize what I need to do to get back on track, and if I make a wrong turn and don't realize it until much later, well then, it

5 Pounds Of Shit In A 3 Pound Bag

Hey Y'all First of all hanks to Maggie and Valerie for being part of my "Nightmare", it's good to have you both along for the um..... RIDE ! :) Secondly, I am not sure what's causing the dehydration, weakness and sore legs, but I hope it's not the German beer I've been consuming, because I would hate to have to give that up. Not only have I been feeling weak, the headaches and neck-ache is back, and all I have wanted to do is lie as still in the bed as possible. Also been having night sweats so what's up widdat?????? One more night here in Germany and then in the morning at 11:55 is my flight back to Atlanta. Haven't missed any meds, so I am not really sure what's going on but the words up there in the title are very descriptive of how I am feeling. It may be the cold and wet weather I have been walking around in, which are affecting me, who knows? Anyway, looking forward to coming home seeing my grandson and getting the "Hell-Hole"

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

....... with my uncle in East Germany. We met at a restaurant, spent about an hour together and then he had to be driven back home. I was disappointed that I wasn't invited to his home, but I think I understand. I left by train an hour later and got back in at ten last night. One more night in Rothenburg and then to Frankfurt for some last minute shopping and then home on Thursday. Remember the Oprah e-mails suggesting she do a show on Early Onset Alzheimer's? I have now enlisted the help of thousands of Straight Dope Members to send e-mails to her as well, so maybe she will take the hint. The Straight Dope is a message board I have belonged to since 2000, and the people there are wonderful. How'm I doing? Okay I guess, but as I predicted, I am stutterign in German and also forgetting words thatz I should know. My friend Peter says the forgetting of words isn't too noticeable, because I do sometimes have to "fish" for them even in German, my first language.

Bill On The Drums

Great time, but I paid for it this morning! We played at one of those new "smoking clubs", which were formed so that folks could still go to a club and smoke while they drink (smoking in public places has been banned in Germany)and the smoke was so thick and my eyes were pouring tears that I was only able to make it through 3 songs before I had to go outside to recover. Stumbled in at 3 am this morning with a thick head and sore throat from all the smoke inhalation. My friend Peter now knows about the EOAD, and I guess it kinda took him aback a bit because I looked like the same Bill he saw a year ago, and he refused to believe that I even had dementia until I reminded him how very punctual I have always been with the birthday cards - sometimes even sending them before the birthday even was due. After giving him several other examples of what's going on, he finally relented and said something like, "But still, that's not an automatic death sentence, is it, Bill?

Hello From Rothenburg ob der Tauber And More About The Bracelet

I arrived last evening at 5:30, and although the trip was mostly uneventful, it did have some hiccups. Hiccup 1. Plane left out of Atlanta an hour and a half late 2. Missed a train stop in Würtzburg (I had fallen asleep) so I got off in Nürnberg and bought another ticket with reserved seat. 3. When I got on the train and found my seat, there were two young ladies sitting in that section. I came to the wrong conclusion that this was not my train, recovered my luggage on the other end of the car and proceeded to find the "right" train. A conductor assured me I had the right train and I should get my ass back on because they were about to pull out. So I went to what was my seat and it turns out that one of the young ladies had taken my seat hoping I wouldn't show up! So I showed her my ticket and she vacated the seat and went to sit on the platform in between the trains. "Billy-Bob", I said to myself, "You need and deserve a beer! So I told my

My Favorite Time Of Year

The Christkindl (Christmas) Markets are going on right now all over Germany, and especially in my beloved Rothenburg ob der Tauber (Clicking on the highlighted text will take you to the webcams overlooking the town square) I am a fan of Christmas and have been ever since I was a little boy. I love the traditions of a German Christmas: the markets, going to church on Christmas Eve, and on the return from the services, the exchange of gifts left under the tree by the "Christ Child". Yes, there is a Saint Nickolaus but it is the Christ-Child who brings the gifts. In a few hours from now, I'll be heading for home to be with family and friends for a "Pre-Christmas" vacation. I still have not decided what to tell my friends (my uncle will not be told), but I have this damn bracelet on my right wrist. Take it off when I get there, or leave it alone until someone notices, and then what? Jesus H, what a dilemma! Guess I'll just "play it by ear". ;) Some

The Bracelet

WOW! A major awakening when I put it on. It was like "Okay, you're accepting it now, you dummy!" So it's on my wrist as I am typing this and on the front is the Medic Alert symbol and on the back is stamped: Early Onset Alzheimer's Disease. HTN with a collect telephone number, my MedicAlert registration number, and at the top, a 1-800 number. All joking aside, I guess I'm glad I have the bracelet, although it feels like it weighs 50 pounds, y'all. But if it will help, I'll wear it gladly, and maybe after a while, it won't seem so heavy. This one is for all my friends. Thank you from the heart. Bill

The Alzheimer Bracelet Story Continued

Here's an update on the bracelet issue: 1. Called MedicAlert and joined their program. ($39.95 for the first year) Gave them all pertinent info: meds, doctor, next of kin notification, drug allergies etc. In return they will keep all info on file in case it is needed if someone finds me gone BOOGA-BOOGA and calls the number on said bracelet. 2. Bought the bracelet: ($19.95) 3. Paid for overnight shipping: ($21.00) Total cost: $80.90 As compared to $7.00 if I had been able to find one at a drugstore. When I questioned the lady about why the bracelets are not as available as, say, a diabetic's or hemophiliac's, she told me it was because they needed the information I had just given her about my disease. She could not explain why there were bracelets for Diabetics, Hemophiliacs, Cardiac Patients, etc. Could the reason be....... MONEY??? I don't know, y'all. I just wish there were a Jonas Salk for dementia! It's nice of you to visit me here. Please come back anytime

Julian William Craig Loves Me!

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And I love him . This is my 8 year old grandson, and he loves playing soccer. Unfortunately, Julian, (like his Dad) is hyperactive and this is controlled with Ritalin, so that he stays focused and does well in school. We (his parents and my ex) also have to be very careful about his sugar intake. Although he is a wonderful little boy, the drug he must take to control his hyperactivity also robs him of that "little boy" joy of living, and it's very rare that I see him smile and I have never heard him laugh. (I don't know how he would take to being tickled. What do y'all think? Should I try?) In this entry I also wanted to ask your opinion about the blog in general. Is it okay? Are there things you would rather not read about? Am I whining too much? Should I stop the music? What improvements could I make? This video is for my Julian, please be patient as it loads. Thanks! Bill

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

Because my friends on alz.org agreed I needed to identify myself as an EOAD patient during my vacation which begins later this week, today I made it my mission to find a MedicAlert bracelet with the words Alzheimer's Disease engraved upon it. Now before I get to my rant, I need for you to know that there are many pre-engraved MedicAlert bracelets available, such as Diabetic Hemophiliac , Heart Disease and even Contact Lens Wearer , to name just a few. Thinking that surely there would be a pre-engraved bracelet for me I visited 7 pharmacies this afternoon, and of the 2 that even had pre-engraved bracelets, AD was not among them. The closest I was able to get was a bracelet which was engraved with just the word Memory , which I suppose might make someone think I was a member of the Broadway troupe of Cats , and if asked, might favor anyone with that particular tune. ;) So here's my rant, and the stats to support it: • As many as 5.2 million people in the United States are liv

My First Alzheimer Dream

Today I had the first dream during which I had to explain that I have Alzheimer Related Dementia. Here's the setting: Went in for a haircut, and as the young lady began cutting it, I suddenly found myself in another area of the mall, wondering what I what I was doing there looking for speaker wire (for a surround-sound system I just ordered for my computer in "real life"). So I said to my self "OMG!" and went back to the barber shop where I found another lady waiting beside my chair. As she resumed cutting my hair, I asked what had happened to the previous young lady? "She thought you didn't like the way she was cutting your hair, and that's why you left." "No, that isn't why. See, I was just recently diagnosed with, blah, blah, blah...... and I am not always cognizant of my actions" And that is where the dream stopped. I found it kinda strange that I am now dreaming about this shitty disease and am wondering if this is my mind