Thursday, April 30, 2009
It's the word statistics re-invented by me.
I do that a lot. Make up words, I mean.
I think it's also a sign of my dementia, that I do.....
One day at work I couldn't think of the word disposable, so I came up with my own word: throw-a-way-able.
I wonder how many other Alzheimer's "sufferers" do this?
Here's a sufferer:
That guy's really "suffering", isn't he? You can tell, right?
But with Alzheimer's, it isn't so easy to tell, Kiddos!
Because we look and (sometimes) act "normal".
If you were to see me at the grocery store you'd say to yourself, "That guy sure is ugly. but he looks normal!"
Okay, okay. I didn't mean to give you remedial Alzheimer's Education, just needed to make that point, thank you>
What I mean by "Statistifications" is that I just wanted y'all to know that this site averages 57 hits a day and we've raised close to 50 bucks, just by y'all clicking on the ads! And that money goes where?
Right! To my local Humane Society and to Alzheimer's Research!
(Sorry, I used to teach high school English and I have a tendency to "check" class by asking a question at the end of a sentence, so excuse me, please)
Since I can no longer take care of my patients, it gives me a sense of accomplishment to know that in just 6 months I have managed to reach so many of you, and gotten the word out that "Early Onset" is not an automatic death sentence!
It means we can still get turned around, dammit!
My friend Mike put it best when he said, "I hope I can stay in Early Onset forever." And Dear Reader, Mike is 72 years of age and writes like a MoFo! I absolutely love reading his words and he is such an inspiration!
So.... thanks for being here these past 6 months watching and reading about my deterioation, and stay tuned..... this is one wild ride!
Enjoy the song! Summer's on the way and I don't wanna see any bikini lines! *HA-HA*
Wednesday, April 29, 2009
It was my friend Beth from Ohio who calls me on a regular basis to make sure I'm okay, and here's what made her laugh: (wasn't funny to me at the time, but I used to love making people laugh, so it was kinda like deja vu for me).
Okay, went to the bank this morning to make a deposit and decided to stop at the convenience store to pick up some diet drinks. I had to park the car around the side of the store at a sort of incline and since my car has a manual transmission I put it in neutral, got out and started for the store, when an elderly gentleman said "Car's rollin'".
I looked, and sure enough, I had forgotten to pull up the emergency brake and it was rolling straight for another car!
Okay, now y'all have to picture this: I have some Earth Shoe openbacked sandals that I like to wear when the weather's warm, but they're not really suited for running, if you know what I mean.
Well, I knew I had just seconds to get to the Hyundai, jump in and stop it, so just like a broad jumper, I launched myself out of the sandals, flat footed, and made it to the car with about 10 inches to spare before impact.
I got out of the car, and there stood the elderly gentleman (like I'm not) and here's what he had to say:
"Goddamdest thing I ever seen", and walked away.
So Beth, I'm glad you got a kick out of that, Honey, but I liked to have made a "deposit" in my BVD's as well!
Speaking of being forgetful. I forgot to remember to tell y'all that when you go to the animal rescue site and click on the food button, and then go to the shelter challenge and put in Paulding Humane Society, Dallas Georgia 30132 and then click that you have to do one more thing: write the name of the animal you see in the box and then click once more.
I forgot to do that last night so my vote did not count.
Just click on the paw and please bookmark the site and click every day.
Thanks and enjoy the song below. It's one you don't hear often by Creedence Clearwater Revival!
Tuesday, April 28, 2009
As y'all know, until recently, I've been a volunteer animal welfare advocate for my local shelter.
We badly need a new shelter here in Paulding County and you can help in 2 ways :
1. Go the site below and vote. You can vote once per day and the more votes the higher the chances of winning . Please also link your friends and ask them to help me help the critters.
Or click the paw icon at the bottom of this entry!
When you go to the site, you'll be asked to click once to provide food (no need to register) and when you finish that you'll be able to vote for our shelter. If you have more than one computer you can also use the other one as well - so that means 2 votes per day.
The shelter you are supporting is Paulding Humane Society, inc. located in Dallas, GA 30132. (You'll need to do a search on the page)
Also, if you're a certain schoolteacher friend of mine from Australia and you're reading this, it would be wonderful if you could get your boys and the whole school involved. Just think, y'all might put us over the top. :)
2. As always, you can click on the ad box you see when you open the blog. Half the money (2 cents) goes to my humane society and half to Alzheimer's research.
So far we've raised a grand total of $43.52. I get a check when the total reaches $100.00. Admittedly, 2 pennies isn't a whole lot, but every little bit helps.
On behalf of the animals and the hard-working staff at our shelter, thank you!
BillPS: In case you haven't been following the
log for very long, "Bert" is my orange tomcat! :)
Wednesday, April 22, 2009
I would like you to watch this 2 part speech, and try to keep in mind that this man has Early Onset Alzheimer's Disease.
Please pay particular attention to his symptoms, and how frustrating it is for him to be able to buy crack (if he wanted to), but yet The National Health will not provide the Aricept that he and other British subjects need in order to function.
What's it going to take?
My "idea" of us colonizing and being self-sufficient was meant as satire, but if our government continues to spend our money on wars rather than its own citizens' health, what's left?
Terry Pratchett doesn't want to die. Bill Craig, who is nowhere near as famous as Sir Terry doesn't want to die. None of us want to die, but no one seems to be listening.
No one wants to believe.
Tuesday, April 21, 2009
His name was Skip and on the Straight Dope he was known as "BarnOwl"
Skip passed away last Friday from lung cancer and emphysema, but before he left he made sure I'd be "okay", because I had mentioned on the Dope that I'd like to get back into painting, but wasn't sure how much I could do "free-hand" since I now have developed a Parkinsonian tremor.
Skip recommended a book and a device known as a Camera Lucida which is nothing but a set of mirrors placed in such a way that they will reflect a particular image on a canvas or paper and one can then proceed to sketch the outlines and then paint in the rest.
Would it surprise you to know that many of the greatest painters used this technique?
Do you think of that as "cheating"?
Skip (BarnOwl) is one of many people I have met on the internet, but never in person.
We never met, but he sure reached out to me, and because I will have that book and his e-mails, I feel very fortunate that he did.
Rest Peacefully, Skip
Sunday, April 19, 2009
The word I won with was CARBURETOR. The guy I beat was Tony.
Tony spelled it with an A where the last E is.
You know? That word should be spelled with an A
"CARBURATOR" There: Much better!
Where am I going with this, you must be asking yourselves, right?
Well, one reason I was such a good speller as a kid was because I learned to
English by using a German-English dictionary, so I had to really look at
the word and see the order of the letters, how the word is pronounced and
what it means. I'd say I spent about half a minute with each word.
"Get to the POINT, Bill!"
The blackboard's gone.
The one in my brain.
The one which has the word conveniently written on it, so in spelling a
word, all I have to do is "look" at the letters and read them off one by one.
I don't know exactly when the blackboard was taken away, but it's gone, and
now all that's up there is letters, LOTS of letters - just floating around
and all jumbled up. ALL jumbled up!
Give me back my blackboard!
Friday, April 17, 2009
It's a frightening feeling, and it's one among many things I will be discussing with my shrink when I see him in May.
"A shrink??? But you're not ......."
What? I'm not CRAZY?
I'm demented. Alzheimer's is a form of dementia. Remember back in Where to Bud? 101 when I first started this blog? We went over that already - where were you that day and why am I writing to myself????
Anyway look up dementia in the dictionary and find its synonyms. The word "crazy" is in there, trust me.
I don't know anyone who's been diagnosed with Alzheimer's who isn't also seeing a psychiatrist. We have to, because we're also depressed. You can't go through the five stages of grief by yourself. Well, you could, I guess, but you'd probably off yourself way before you needed to go.
So yeah, I'm going for psycho-therapy because there needs to be a "baseline" established and I need to get myself into a mode so that I can enjoy whatever time is left.
And yeah, I too think about that time when I won't know my loved ones anymore. It's like being on death row. You know it's coming, you just don't know when.
Love each other.
Do it now, while there's still time. "Live each day as if it were your last" is a really good philosophy.
Till next time. Enjoy your weekend. Today was a pretty Spring day in Dallas, Georgia USA.
Thursday, April 16, 2009
During my short sky-diving phase I used to just marvel at how very quiet and peaceful it is during that short ride down, and, like an eagle, I wished I could have found a jet stream and stayed up there a while longer, just riding the wave.
That's what today's entry is all about: The Coming Down.
I came down last night. Hard.
But I landed, and you know what they say, right? "Any landing you can walk away from, is a good one"?
I had some help.
Alz.org has a 24-7 Help Line and I had to use it last night, because everything that's been going on with me lately just came rushing over me all at once, and I needed to grab onto someone. So I did.
I told y'all it was gonna be the good and the bad (and the ugly) on this blog, right? Isn't that in the disclaimer? :)
So anyway, I grabbed onto a little (a lot really) TLC, prioritized things a little, and woke up this morning with my head where it should be: On my neck and in the clouds. ;)
So thank you, Kathy, for "talking me down", thanks also to my alz.org friends who stayed with me online during that little SNAFU and thank YOU for staying with the blog.
Wasn't it Bette Davis who said, "Fasten your seatbelts its going to be a bumpy night!"?
I'm gonna change the last word of that quote to "ride", and thank you for ridin' along!
Wednesday, April 15, 2009
For the past few days, me and some of the guys and ladies have been "batting" around a proposal of mine that we (Alzheimer's patients) buy up some land, build on it, incorporate ourselves so as to pay no tax, and then secede.
Well, today we received a proposal from Mr. D. Diablo Doubletongue, Esq. of the firm, of FEEBLE FUTILE & FAIL LLC, ATTORNEYS which we are to take as satire. Some very good satire. It takes a while to read, but as you do, remember that Mike Donohue (a former attorney) is an Alzheimer's patient. He's an Early Onset Alzheimer's Patient trying to get and stay well!
Thank you Mike! Very well written!
In RE: Referral of FEEBLE FUTILE & FAIL LLC, ATTORNEYS
TO WHOM IT MAY CONCERN:
I have been asked to submit the following proposal of a colleague of mine in the practice of law who still persists in trying to do it, my having learned better and quit!
It is as follows:
My name is D. Diablo Doubletongue Esq. I am from the respected firm of Feeble Futile & Fail, LLC. I am at your service!
You appear to be a group that meets the demographic of who we are and who we serve. Attorneys by history are measured by their willingness to undertake impossible tasks and perform impossibly on them. They can talk about, talk around and talk away from the point endlessly charging only for the quantity of what they say which is often weighted by what they don’t say.
In this thread: "In The Land Of The Blind" and the thread "Binder & Binder" of the Alzheimer’s Message Board there is a discussion about the cost of care, the insufficiency of interest by anyone who would or could help and the impossibility of government undertaking the initiative. Government cannot do it as is aptly observed in response of one contributor. This fact is obvious because of their recent tax cutting, war time spending binge and the cost of the economic collapse that has recently occurred.
It is quite correct; government cannot handle this critical need because they simply lack the wherewithal to do so. The other possible candidates are Alzheimer’s Supportive Groups. They seem to be directing their concentration and fund raising “betting on the come of a cure” as preparing for the catastrophe should a cure not be found.
Unless some other entity can be found to step in to manage this threatening calamity there is nothing more than can be done other than rely on resources as they now exist.
This is of course fraught with concern.
At current cost those qualifying for any kind of assistance or care entering a system so regulated and standardized that quality is often overlooked, put themselves at distinct disadvantage. So much has gone into creating the infrastructure to provide the service there is little or nothing left to spend on securing quality of service. The infrastructure stands, is funded, is administrated and managed and that has taken all of the expenditure before quality of service can be afforded. If there wasn’t the capital plant in existence to service the need, there would be no service so why worry about the quality of service however it is provided. It is better than nothing.
Those able to withstand the cost of care, if they can find it, they are OK. This is so as long as their lucre lasts.
Those in the middle must first deplete what they have, jointly, the person with AD and the caretaking spouse, before any assistance can be obtained leaving the surviving spouse in the street in a state of penury as the Alzheimer’s patient can finally go on the county. There is no provision for the survival of the spouse unless of course they can successfully secure Aid to Dependent Children.
If nothing is done those of you with Alzheimer’s are left with the bill which is too costly to pay, or, the task of doing something about it.
Considering the impossibility of the task it is good that these issues be considered in the lightness of that impossibility as has appeared in part on the two Message Threads, hereinbefore referred to.
Nonetheless this is a proposal for sound service we are positioned to provide.
We will be more than happy to handle the transfer of Alan’s small part of the Rockies to an appropriate qualified non-profit corporation and handle the filing with IRS to determine all payments to it to be tax deductible including the cost of caring for the shareholders.
Once established with blanket deductibility we will start immediate capital expansion building fazed treatment facilities. This will start with simple group domiciliaries in suitably serene settings for Alzheimer’s afflicted and their caregivers.
When care becomes required beyond group and group home capability we will have in place capital expansion designed to provide outpatient services to individuals or group home members. We will provide assisted living facilities to which a group home resident can move for additional help. We of course will have a nursing home capability with hospice wing. We propose to provide for your necessities from beginning to end of care.
We will establish this facility with its services in such an environment that quality and economy of care including provision of services are not consolidated and compromised by the competitive marketplace under the auspices of reducing costs by competition. Rather than submit that disingenuous formula of competition as a cost container we will assert actual cost of care measures to make them economical.
This can be done by obviating the necessity of overhead management and administrative costs, such as
• CEO salaries set by Crony Boards of Directors.
• Make Work Middle Management Plans including
• PR Programming
• Advertising programs
• Legislative lobbying
• Regulatory Liaisons
• Certification Standards Review Committees
• Modification of Quality Adherence and Industry Compliance so each participant is held to the same measure of performance and cost.
• Liaison with the Quality Adherence and Industry Compliance Agency setting the standards and unitizing the cost and profit return.
• Investment Advisors
• Sales forces with adequate commission incentives to keep talented commission performers in place and performing rather than seeking employment elsewhere as is currently plaguing financial institutions.
• Financial Advisors to take group assets public
• Attorney fees to manage public offering
• Brokerage costs to initiate and market public offering
• Accountant services to hide the personal profit.
We of course have no idea how to accomplish our goals. Given your need, the evident futility of hope you manifest in filling your need, we ask the opportunity to work with it and see if we do anything less than foul it up more.
We first propose you hire a public research group to explore the feasibility of such an undertaking. Have them formulate a plan and provide a means of accomplishing your goal. Having that we will be more than happy, at a reasonable fee, to be negotiated after the fact, to undertake the performance initiative for you.
D. Diablo Doubletongue
Just totally blew me away!
Among the meds he mentioned, I am on Exelon and Namenda for the dementia and on Cymbalta and Welbutrin for the depression.
Unfortunately, weed (proven very beneficial for AD) is illegal, or I'd be one happy grandpappy!
Tomorrow (Thursday) is my neuro-psych test, and it's an all-day event, so keep me in your thoughts, please. Maybe when I'm done tomorrow evening, I'll be ready to join these guys.
Tuesday, April 14, 2009
1. I know that not everyone who reads my blog goes over to alz.org and clicks on the message boards, but there's some very intelligent folks over there and in addition to that our sense of humor is intact.
We were discussing politics and the fact that AD is getting short-changed in the financial assistance for research department, so I added the following "tongue in cheek" comment:
"All right then, HERE'S what we'll do:
1. Incorporate ourselves as a church or some other non-tax paying entity
2. Buy up some land. (Hell, I'd contribute to THAT!)
3. Colonize (we'd have our own doctors and nurses and get our meds sent from Canada - why should WE subsidize GM and the big banks? They don't wanna help US!)
Alan, you can be in charge. I'll be your propaganda minister (I'm half German, remember?), Tom will be our Secretary of the Interior......
Who's with me on this?
I'm only HALF kiddin' y'all. There's a lot of us!
We'd open our own casino's, and use the winnings for research and AD drugs. A self-sufficient colony!
No! Don't cue the crickets!!!!!!
2. I have news (of a sort) about the "Write Oprah An E-mail To Do AnAD Show!" campaign:
Lisa, (one of our members) actually got through to a producer who told her they wanker do a show, they just don't know when. So we're "stepping" up the e-mails a bit and we're working on a "quasi-form" e-mail that everyone can click on which will have a space in the middle for your own Alzheimer's story. I'll let you know and maybe you can help us again?
3.Speaking of Oprah, I was checking with our Alzheimer's chapter and there isn't an AD telethon! I think there oughta be one, don't y'all?
Oprah would be good and who else? I was thinking Sir Paul (McCartney)..... Any other suggestions?
Remember? Adult content, right?
I need to figger out how to put smilies on this blog!
Monday, April 13, 2009
Mr. Speaker, you may not remember me but I was in one of your classes at what was then known as West Georgia College.
Next I knew you as a political candidate and had you in my radio studio many times for interviews. I was always impressed with your intelligence and very positive outlook for our Country and have followed your career ever since the 70's.
I am writing you because I am now being treated for Early Onset Alzheimer's Disease and have volunteered to be an EOAD Advocate with my local AD chapter in Atlanta.
I first became aware last October that I was having memory issues, took a look at the 10 symptoms and was in every one of them. I am right now "jumping through all the hoops" in order to get my SSDI and from what I gather in speaking with fellow patients (and from reading your newsletter) I have a lot of jumping yet to do.
All of us on alz.org are unified in our efforts to get treatment and have some kind of dignified life left, but the common thread we all share is that even though one of us is diagnosed every 70 seconds, it seems that our government doesn't care about us, and some of our doctors (I see three) either don't care or don't have the education they need to understand our level of dementia.
I am also a Viet Nam Vet, but I don't believe our veterans are getting the help THEY need either.
It's a very sad situation and we are all very happy to have you on our team.
"Memory.....is an internal rumor." - George Santayana
My blog: www.wheretobud.blogspot.com
In a previous entry I mentioned that someone is diagnosed with Alzheimer's every 72 seconds.
If that's the case, why in the friggende farg are we still having to fight to be able to get care?
I have friends who have EOAD who have had to hire lawyers just to get their disability!
Why is that?
I think it's because doctors aren't taking this disease as seriously as they should.
They look at people like me and my friends Tom and Alan, see that we can still hang a few words together and make sense, and conclude that we don't meet their criteria for Alzheimer's.
Here again is the page with the symptoms: http://www.alz.org/alzheimers_disease_know_the_10_signs.asp
I'm going to add one that I haven't recognized in myself till just recently: I am seeing people who aren't really "there".
So what I am proposing is an online, television whatever interview with a private doc, a shrink (sorry, shrinks!), a nurologist and someone from Social Security and let's for Christ's sake put 'em on the spot, and make them answer some tough questions.
Y'all somebody had to come up with that list of symptoms, and by God, somebody had to approve them, so why in the HELL are some of us having to pay out the ass just to get what we need? I and so many others have 80% of those symptoms.
There's NO REASON for this.
Hope y'all had a great Easter! Sorry I had to get a little "medieval" on ya'! ;)
Thanks for letting me......"vent". (Y'all may wanna turn up the sound for this one!)
Friday, April 10, 2009
Tom invited me to come to Harrisburg (Pennsylvania) this Easter weekend, but the trains are all booked and I just got my car out of the shop, so Tom & Gerri (cute names, aren't they?) may I please have a raincheck?
We are expecting tornadoes here and the wind is already kicking up, so this will be a short entry.
Love to all and Happy Easter!
Thursday, April 9, 2009
It would mean a lot to me, personally, and you may be helping some little puppy or kitty to live and be adopted.
Please remember: "Spay, Neuter and Adopt"!
My love to all of you!
Wednesday, April 8, 2009
A doctor examined him once and gave him the name of the disease he had. I can't recall the scientific name, but the generic name is "Gigantism".
What that means is, Andre would continue to grow (because of a growth-hormone gone awry), but at some time his bone structure would not be able to support his body, and he would die.
And he did. At age 44. Of congestive heart failure. His system just built up too much fluid, he could not get rid of it, it backed up into the lungs, put a strain on the heart, and there you go.
He knew at age 22 that he had already lived half of his life, but he didn't care, and this is why I am writing about Andre: He decided to live every day of his short life as if it were his last.
When I was younger, I collected things: music, guitars, books.. but now that I am facing my own "date with destiny" those things have lost their "importance", and right now it is the moment that is important.
Every moment as if it were my last one.
Enjoy this one, please. It is in my Top Ten favorite songs.......
I send my love!
Tuesday, April 7, 2009
I will be honest with you and tell you that among the questions I got wrong were: the date and month (I thought it was still March), the season and the floor I was on. I can't walk heel to toe very well without losing my balance, and I couldn't remember one of my meds.
But I can walk and quack like a duck (neither of which he wanted me to do - if he had, I could have done such a great duck, I think he would have had me admitted and I would not be writing this right now.) I do a great duck!
So what's next? The neuro-psych testing. On April 16th. It would have been great if we could have done it ALL yesterday, but I think he wanted to meet me first and see how much of a whack-job I am, before he ordered it.
In the meantime, I have someone coming by to re-stage my apartment so that I can find things again. Her company is called "Chaos to Comfort", and I found her on the net. This is also something my EOAD counsellor Suzette has recommended. Like my Dad at this age(59), I also have problems misplacing things, and I go a little nutso because only minutes will have passed between laying something down and trying to find it again.
I lose my debit/check card at least twice a year, and I know it's gotta be here in the "Hell-Hole", because once I notice it missing I check my account and no one's chared anything to it but me!
I just hope she doesn't make me pack up my guitars! :)
Here's a song for my friend Jo from Frankfurt, whom I had the pleasure of meeting during my last trip home to Germany. She was kind enough to take me on a walking tour of her city and I enjoyed our time together very much.
The song is in German, but the guy is singing about the frustrations of complicated instructions on opening products such as mustard, beer, and his girlfriend's bra. ;)
Even though some of you won't be able to understand it, I hope you enjoy it anyway. I love playing it and singing it for my friends when I am home.
Thanks for your visit!
Saturday, April 4, 2009
Wow! Who knew???
I have blue eyes.
Never knew that.
Thank you for following this blog. I wish I could thank you and hug you personally!
Friday, April 3, 2009
Back in the day when he taught me Poli Sci at was then known as West Georgia College.
I had him in my radio studio when he ran for office, and later I supported him in his run for Congress, and you know the rest, right?
Here he is in support of Alzheimer's. Read and discuss. Please.
You may need to copy and paste, sorry. I have forgotten how to create a hyperlink.
Thanks to my "BRO" (Skip) for forwarding this to me! Love you, little brother!
Okay, I alluded to it in the last entry, so here it is. Enjoy!
MORE COWBELL! ;)
Thursday, April 2, 2009
Wednesday, April 1, 2009
Sometimes I just really "don't feel like it", but even though it isn't like I gave my word, it's the same as to me.
I just walked in from my first-ever Alzheimer's Association meeting in Atlanta, and I told Suzette, my counselor that I would write tonight and tell her what I thought - was I glad I went?
I couldn't answer honestly then, because I'm just not a person who socializes much, and as I told Suzette, this was one of those times. I really had to make myself go, but I made a "commitment" and I needed to see it through.
So Suzette and Danelle (my other counselor?: Yes, I am glad I went, and I also enjoyed meeting Scott, a new EOAD friend.
He and I shared experiences including our frustrations that because neither he nor I look our age, and we can still reason and converse normally, people find it hard to believe we have Alzheimer's.
Remember that phrase I hate so much? The one I wrote about in one of my very first blog entries?
"Oh! I do THAT!" (When we're asked what kinds of symptoms we have)
Well, he has heard it too!
Other items on the agenda were a discussion of challenges, my biggest one being dragging my sorry ass out of bed these days, all the uncertainty, the lack of desire to do the things I used to enjoy so much (playing my guitars, riding my bicycle, helping the animals). The feeling just isn't there right now.
Hopefully, when things are a little more certain in my life (the neuro-psych testing next Monday morning, for instance) it will all come back.
Till then, "I'm not going anywhere"
Thanks, Suzette, Danelle, Scott and Shelley, it was a pleasure to meet you all!
Here's my favorite all-time "Im not going anywhere" song.