Where To, Bud?

This will be the second installment of my own responses to questions posed to a group of Early (Young) Onset Alzheimer patients during 4 live and one virtual town hall meetings in August of 2008. Kris Bakowski was one of the attendees of this event and kindly sent along a summary report which you can read at http://www.alz.org/national/documents/report_townhall.pdf . Response: "Healthcare professionals need to take us more seriously and most of all listen to our questions and concerns........treat us as if we were their mother, father, sister or brother." Those of you following this blog know that I am in the healthcare field and so have a little more grasp of the terminology, signs and symptoms of AD, but I am also a patient, so much of what my neurologist is telling me I am hearing for the first time. I do, however, have a very good relationship with Dr. K, and I am (guardedly) looking forward (Damn! That still doesn't sound right) to the 72-hour EEG and the Neuro-P

It shouldn't happen, but it does - you meet someone, you connect and discuss things you have in common, you establish a bond - and then for one reason or another you "delete" them with the touch of a key from your life! During the "dark" period of my life, I somehow convinced myself that no one I knew gave a shit about me, so why keep them around? This included people I met on the net and on various "bulletin boards" who became "virtual" but at the same time, "real" friends. Real enough so that I would remember their birthdays, at Christmas. etc. etc. For some reason, they fell short of the "standards" I had set for them, and so......BYE! Then came this . And now I see that all the people I sent away are the people I need most in my life and now I want them back. I am the worst kind of hypocrite there could ever be: Not one who uses words only, but one who also HURTS by rejecting, and I don't know how to deal with that

This is the report Kris sent me which I had planned to use as part of my series of entries on Alzheimer's In The Workplace, but every bit of it is so important that I'd like for you to read the whole thing in its entirety rather than me quoting from it, so here's the link: http://www.alz.org/national/documents/report_townhall.pdf One thing that will shock you is what I alluded to in a previous blog entry: There are currently 5.2 million people in the US alone with Alzheimer's, and by mid-century that figure is expected to increase to 16 million. Those figures come from The Alzheimer's Association's report 2008 Alzheimer's Disease Facts and Figures. Half of those are people under the age of 65, diagnosed with "Early Onset" (soon to be called "Young Onset") Alzheimer's. That's us "baby boomers", folks. What that means is that AD is no longer an "old person's" disease, and those of us in the work force righ

The "anger" is me , boys and girls. The "hurt" is those around me who don't understand the anger and how much I hate myself for getting this shitty disease and I hate myself even more when I whine about it. I try to "swallow it down", but sometimes I feel so helpless when I don't have the desire to do anything that used to give me pleasure that the people who are close to me bear the brunt of it all, and believe it is a personal attack, and while it may sound that way, it's the anger that comes with the 5 Stages of Grief which Elisabeth Kübler-Ross wrote about in her book On Death and Dying that is the problem. I am on two kinds of anti-depressants along with the AD meds, and I have been on the anti-depressants before I even knew I may have EOAD. I got on them because I had anger issues before, yes, but I also got on them to save a relationship that was fast going down the drain. Unfortunately, it takes two to tango and person number two ju

Ever since my lumbar puncture, I have periodically had a very stiff neck and a very bad headache, and so now I am wondering if something went wrong when my Neuro guy punctured my spine? Today, I have to move my whole body to see side to side, and I am SOOOOO tired of this and the headaches. I ALMOST had the desire to get on the bike and ride a few miles today, but not like this. All I have strength for today is just nothing. I need some TLC. I need my Mel. I miss her. Love Y'all Thanks for bein' here. Bill

Please join me in wishing Tom and his Gerry a Happy Anniversary. Tom is my Alzheimer's Buddy whom I have yet to meet, but he has been a true friend every step of the way. Thanks Tom and Gerry, and please pop a cork for me tonight! Bill

But I needed some fresh air so I took Anita (my Takamine Jasmine named after my mother) and we went out to the patio and learned this song And while me and Patsy were singing it together, I could not help but think of how many others of us there are. Gute Nacht Bill

There have been a lot of those lately, y'all. I know the "catch phrase" for all of this is "You are not alone", but right now, except for Bert (my tom cat in my lap as I type) I pretty much am alone and it sucks, big time. Just yesterday I met someone in the grocery store whose name I should have known - she looked familiar - but I just could not come up with the name of a nurse I work with (closely) every goddam weekend! Still, every cloud has its silver lining, I suppose, and yesterday was a cloudy day that put me back in touch with two of my broadcasting friends: Rick Zeisig and Alan Duke, two of the most charismatic people you'd ever want to meet, and both of whom have made a big impact on my life. I thank them both for getting back in touch with me. This is for Rick and Alan and YOU : Thanks for making me hang in there, Bro's and Sis's! Bill

I had a very nice conversation on the phone today with Kris Bakowski, herself diagnosed with Early (Young) Onset Alzeheimer Disease at age 46, and also someone who had to fight to retain her job. Although I am not at that point myself (and won't be until I get some kind of a "baseline" with the Neuro-Psych testing), I wanted to make contact with Kris because she has been an advocate for people who are still able to work, but may be getting the shaft because of something not their fault. Kris' blog may be found here: http://www.creatingmemories.blogspot.com/ Please become familiar with Kris for any information or questions you may have because she's been dealing with this much longer than me, and she impresses me as a person who doesn't quit. Thanks to Suzette with alz.org for connecting us and please stay tuned for more on Alzheimer's In The Workplace. Thanks Bill

Don't worry, it's not that kinda "time out"! In yesterday's blog entry I wrote that as long as I keep busy with something , I tend not to dwell on what's going on with the dementia and stuff as much, and today my friend Peter (from Germany) e-mailed and reminded me that I said I was going to get him and his band (Time Out) some gigs for a short "tour" here in the Atlanta area, so I am working on that right now as well. I am fortunate that my son (Jason) is acquainted with some club owners and we're taking Time Out's DVD around to those clubs next week. It will be a "Bill Craig Production" since I will be providing the plane tickets, food and accomodations, and basically "promoting" the "tour". Here are a couple of youtube clips of Peter(bass & lead vocals), Hubert (1st lead guitar), Detlef (2nd lead and rhythm) and Guenter (drums) from a recent gig/concert in Rothenburg (my home town): And that's my bes

Today I got a call from my neurologist's office, and I have been pre-certified by my insurance company to go ahead with a "72-Hour EEG" to monitor my brain waves and record any seizures or other abnormalities I may experience. Basically, it involves your ol' pal "Billy-Bob" walking around with stuff taped to my head, off the back of my head (the wires) and into what looks like a fanny-pack worn around my waist, in which is the monitoring device which records all my brain-waves (such as they are! :)) I will be doing this during my off-days from the hospital, and if you're asking yourselves if I'm going to go out in public with all that shit hangin' off my head, well, the answer is NO . I may, however, let a friend make some pictures, just for shits and giggles, and I'll post them here for your viewing pleasure . In other news, as I told my friend Tom on the phone (bless him, by the way, for his phone calls! I'm sure if it hadn't been

Last Spring I did a benefit bicycle ride cross-country for the Humane Society's Spay, Neuter And Adopt program (details here : http://www.d2d4wetnoses.com/ ),and I'd like to do it again this year - only this time in September and instead of cross-country, I would like to do it "Cross-Georgia", but again, solo. Last year, I got my own sponsors, did my own publicity and booked and paid for many of the rooms for me and my team, but given my situation with my dementia, I don't think I can handle this all on my own this year. It is for this reason, that I'm throwing this out here on my blog, just in case some of you may have ideas, would like to volunteer, or volunteer some one . Michelle, who did the website I linked you to, will handle it again, but I need help in all other areas. I need something to do, and cycling is something I have always enjoyed, and if I knew this could happen, well, then I wouldn't have these "episodes" like a few nights a

So what normal thing did I do today to keep myself "focused"? Cleaned house. In 10 minute increments. In an earlier blog entry, I mentioned that lately when I clean, it is more of a frenzy than an organized, "orderly" kinda of thing. So what I did was this: Get out of bed, clean for 10 minutes, then lie down for 15 minutes; clean for 10, down for 15, etc........ I lasted about two hours, and there's more to come tomorrow. Unorthodox? Yes, but it works for me , and the place looks better than it does when I use the "Tasmanian Devil" approach. And of course there was music! Admittedly, I cannot use this approach with other tasks (10 minutes CPR, 15 minutes sleep. etc.), but I believe it's a good exercise because it allows me to plan the next task. In short, a major paradigm shift for the "German Boy" (the neighbors called me that when we first moved to the US, and I guess it kinda stuck in my mind). Gute Nacht, Boys and Girls. ;) Bill

From Oh God ! : "Sometimes when you don't feel normal, doing a normal thing makes you feel normal. Here... start shaving." - George Burns Well. obviously I cannot shave continuously, but I will strive to do some "normal" things during my next four days off. Special note to my friend Helga in Australia: Glad you came through your surgery all right and that you'll soon be even better than ever - if that's possible! Thanks for "hangin' with the German Boy" during my recent troubles and enjoy the song, Y'all. It's one of my favorites. Bill

Need a little time to gather myself together, y'all. Thanks for caring. Back soon. Bill

Forgot to take my meds three days in a row. Sorry. Bill

Not a good day. When I said I'm losing altitude I meant it.

Sorry

Hey Boys and Girls A very close friend of mine just lost his job because of his Alzheimer-Related Dementia, and it got me to wondering how many others of us this may be affecting, so in the next few weeks, you'll be seeing some articles relating to this, and I hope that if you have a loved one or know of someone who's been let go because of AD, you'll share it with me? Confidentially, of course. As for myself, I am still able to work, but am noticing some "taking up of slack" by my co-workers. It isn't that I cannot do the work, it's just that we are abnormally busy in the hospital and ER right now, and, being the only therapist on from 7p-7a, there are times when I need to be in 2 places at the same time and I cannot always do that. It is appreciated, but it also makes me wonder if I am slowing down, and because I have no "baseline" that's kind of hard to determine. Looking forward to hearing from you and thanks for following the blog - it

A bit of good news to share with y'all today: I seem to have stopped stuttering. You know, I never really knew why it came back - I used to stutter as a child - and when I first began noticing it was a couple of months ago, and I have no idea if it was a progression of the AD, or a result of the Aricept which did not agree with me, and caused me to have dysphagia and terrible panic attacks, or if it just stopped on its own. I'm gonna blame it on the Aricept. (Or maybe I'll blame it on the Bossa Nova!) Just glad it's gone ! I cannot really tell you when it stopped, because I wasn't paying attention , but I suspect that when I was with Julian at Christmas, it had abated. Here's some stuff off Web MD about stuttering and Alzheimer Disease: http://www.webmd.com/brain/tc/stuttering-symptoms I would like to thank some friends who have joined the blog for clicking on the ads, and those are my fellow Beethoven Fans over at http://www.forum-lvbeethoven.com/Forum//inde

This is the one I have to fill out as part of the multi-stage examination at Wesley Woods Memory Disorders Clinic of Emory University. The testing will involve 2 parts (maybe 3), the first being Cognitive Evaluation and Laboratory testing. They can have all the blood they want, but no way am I having another lumbar puncture. The one I had a couple of months ago, I am still experiencing a stiff neck and headache from, and I'm not going through that again. Part Two involves Diagnosis and Treatment Recommendations, and this (I hope) will finally nail down how far along I am in my demented state of mind. Many of the questions I have already covered in previous entries describing my symptoms, but one that was asked did make me pause and consider, and that was the one about hearing voices. I do hear voices sometimes , but they are generally many people talking at once and are indecipherable or at times just one just calling my name very forcefully: "BILL!" and that's it

This really "stands" on its own without any words from me, except to say "thank you" to my friends Helga and Luke from Australia for sending it along. Hope you enjoy it, and it makes you feel good. It's a tad long, but well worth watching the whole 5 minutes and 27 seconds. Thanks Bill