Where To, Bud?

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 canno...

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

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...

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 tryi...

Sometimes you just have to fight back. God, I'm so tired of fighting back! Need some strentgh, please! Kwitcher whining, Bill!!!!!!!!!!

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 th...

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...

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 in...

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 sugges...

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...

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...

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 Christm...

...... 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

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 e...

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 muc...

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 i...

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 fo...

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 ...

==================================================================================== 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...

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 ...

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 ...

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 ha...

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...

Thanks for being my friends!

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...

........ 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.lithiaspringswa...

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...