Oceanside's Cultural Art Center

Should you happen to be in Oceanside, CA on Saturday 7/28/2012 the center is having what is called "Write On", event.  Featuring the authors that live in Oceanside. More info Click Here!!!!!

Bet you cannot guess who will be there. So if you are out and about that day stop by.

God Bless & Keep You & This Country of Ours!!!
joe

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Where the Hell did that Buick come from?

Yes early Sunday AM about 5:15 or so i am told, I was struck in the back of the head, neck shoulders and back by a buick. I think an ol 1956 Buick Roadmaster for those who remember those tanks. That is what it sounded like. See I was having this wonderful dream, I was young and agile again (you know that is a dream), i was playing in traffic in the street, playing dodge um with the cars and doing just a outstandting job of winning. I made this magnificient  summer sault to avoid a car and go to the other side of the street to the sidewalk. Then it happened CRASH, BAM POW, Holy Cow Batman, laid out flat this Buick had done me in, sneakoy devil got me from behind.

Well after hearing my name called  for who knows how long there is my wife asking me if i am ok. Well i did not understand how she got there. The truth be known Mr. Gymnist here apparently did a leg flying high twisting of this very fit body of mine, right out of the bed. In the process I struck my left ear, back of my poor little head, neck and shoulders on the bedside table. Not to mention my fat ass on the floor (that was the real crashing noise).  Later in the day when I confessed i could not see well, my head hurt, hell all of me hurt and was more unstable than usual, physicallly that is, we spent the next 8 ½ hours at the wonerful Hospital Hotel. Had a CT scan and it showed the following:  No definitive intracranial hemorrhage.  There is a focus of increased density to the posterior left temporal lobe. No skull fracture. Mild sinus opacity. Basil ganglia calcifications (and my very favorite medical language) and other incidental findings. I guess they found a brain cell.  One good thing the basil thing which has never shown or have I been informed of in right on that part of my ginormous brain that controls your balance, and is an old brain injury that continues to calcify.

What a day. Take care of yourselves.

God Bless & Keep You & This Country of Ours!
joe

PS. anyone finds that Buick it is mine.

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Faces and Names don't always match.

The other day i do not remember when it was my younest daughter and i were siting on the couch talking and I looked at her and could not remember her name. Which is Kathryn. I tried to say it but i just was not able to. Finally it came out and she just looked at me and said you forgot my name, tried to cover it up, but she had me dead to rites. We did laugh about it, but it bothers me. Living with us she understands more about what is happening then the other kids and she just  I think the word is placates me, and says don't worry dad it is ok.

God Bless & Keep You & This Country of Ours!
joe

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In The Moment!

As many of you know i have also fought my disease of alcoholism.  The program i joined taguht me to live one day at a time. Taking things as they came and dealing with them without the use of my friend Jonhn Barleycorn. Now I have a disease, Alzheimer's and Frontal Temporal Dementia, which have robbed me of those memories that i was told to keep green, so I would remember my life with JB and the hell that i lived in. Those days and other memories good and bad are all becoming only words to me. They are starting not to carry the pain, joy, saddness, hapiness , etc of my past. Alzheimer's has now forced me to live in only the minute, not even the day, I can do something at 8am and by 8:30am it is gone, not even a memory only a few words exist about it. This is becomming more and more my life. Living only in the moment. I guess that is how we are reallly to live, but this is new and confussing to me. It is about 7pm here and I cannot tell you what I did an hour ago.This fuckin disease really robs you of things and it is taking more faster and faster. But I still have ½ brain cell that refuses to give up, so I can tell you of this journey at least for the moment.

Take care of yourselves.

God Bless & Keep You & This Country of Ours!
joe

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The Remember Song

Before i give the link to this song, I want to answer Dana's question. First no question that i am assked on this blog is to personal. I have nothing to hide and wish to share all that i have. I do not take Aricept, Namenda, or Exlon (or whaterver it is called) nore the other two drugs for Alzheimer's and other forms of dementia. See I wrote all this dow so I could do this post and not use my ½ brain cell.  I did use the A&N drugs, however I got worse on them and suffered other sided affects, the nuerolgist that I went to, the best in California, told me to flush them and go on and enjooye the rest of the time I had left. So I did. 2 other neurolgists feel the same. I know some folks say they help, my issue is do they really or do theose at least some that take them think they do because that is what they were told. Read the comple pharm reports on them and you will see that they are not sure if they will work. The only medical advice if any that you will get here is talk to your doctor and make them talk with you not at you it is your body and your life. So there!
Anyone no matter were they live in the wolrd can order my book on my side for the shippping only price. Yes Karen it costs more than 6.95 for me to ship out of the states, but that is my contribution to get the word out. Besides a paid a bundle to publish it, rich i will not get, my purpose is only to share this World with others.l

Now for the link which has the credits for the song:
The Greatest Alzheimer's Song Ever!
I hope you find the humor and truth in this song. By the way I about fell out of my chair listening to it.

God Bless & Keep You & This County of Ours!
joe

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Strangers in the Midst.

I have done my veyt best to fight this disease with all the mental strenght that I have had. I have allowed it to take its tolll on me physically because my mind was more important and is who anaad what I am. Well itt has marched on and I have not, it is to the point I look at those in my house and wonder who they are. I know I sould know them but I do not. I pretend to be in touch but well Mr. Alzheimer's has taken over and made him serlf at home. I rarely hear from any friends or see them, I hardly hear from any of you anylonger. There once was a time the commentss and emails were difficult to keep up with, now the emptiness of that is setting in. I know everyoe has their proble,s and life to live, but the anger that this disease hels to raise, while not really justified, it happens and and this world of mine has grown smaller, colder, darker and emptier and really not worth being here, I pray and even beg to be taken, but it is in his time. I have nothing more to offer or give and do not know why i am here.
Well i am loooosing my train of thought so take care of yourselves.

God Bless & Keep You & This Country of Ours! (Amd je Rest pf upi as We;;)
joe

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Update on Tests - more doctor appointments.

Well after flunking my 2 hour glucose test with colors, we now have more blood tests we are waiting on, seems Alzheimer's and Frontal Temporal Dementia are not enough to have. We alll konw i cannot spell. have lost many brain cells. I am Bi Polar, I have toooooo much body, now I have Type II Diabetes, Yeah team more fricken meds. The Sleep DR. that did my sleep tests, has me scheduled for pulmenary tests thinks I might have COPD yeah, I will live to be 112 now, thanks a lot. You will love this, I have a motorized cushion to help get my well developed body off the couch into a standing position, yes modern technology to my aid. Still working on the wife to put an elevator in but boy she is stubborn.

I get brain fades now, use to call them brain farts, but then they only lasted a few seconds, these last longer thanb I can remember having them. I was fitted for a back brace to day because I have shrunk almost to grasshopper hieght, have spinal spinousious or something along those lines. The Golden Years that is what they call this, well I am on a hunt for the person that came up with that phrase, I intened to Golden Years all over that person.

At least I have all my body parts, some do not work right, but they are still there. Have all my own teeeth, ok some have crowns, but underneath the construction it is my tooth. I am lucky i still have my sense of humor good or bad (mostly bad) and still can talk with you my family. There are many with Alzheimer's and other forms of dementia that cannot or will not speak out, and that is ok. Because all of us with this disease will be set free each in our own time from this life. I for one can hardly wait.

Well you all be good, if not just do not name it after me.

God Bless & Keep You & This Country of Ours!
joe

PS Pray for all those who are out there putting their lives on the line for all of us all over this World.

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What AAAAAAAHHHH RUUUUUSSSSHHH

Yesterday when I was younger, i wnt and had a large amount of blood taken for tests. Now I am a child of the night seeking out dinner.  I had a two hour glucose toleratnce test, WOW.  I was hungry as hell then they gave me the water to drink, filled with what tasted like sugar, but I am not sure what was in it. Well now I felt fine, they drew my blood at one hour and the world was ok, at the seceond and final hour the world was a bit different. I felt like i was as drunk as a skunk I could not walk without help. Funny how the floors and walls move by themselves. I truly was wasted have not felt like that in decades, nor do I want to again. Should get results within the week. Had to wait until today to catch you all up, yesterday just was a RUSH all day, no one wanted to leave me but everyone had to go somewhere, I ate alot and slept and by late evening I was in better shape. Today is ok, i just hurt all over, feel like i was used as a punching bag, i am big enoungh and well stuffed.

I still wonder why this disease is not working the same with me as others, it seems all the physical parts are rapidly come down, but although not fully functional, my brain seems to be somewhat alive. I do have problems doing complicated things, this is one of them, but there are times that things seem crystal clear, then they go to hell in a hand basket. Really drives me nuts. But Lynn in her loving and gentle way reminded me today that I never do anything the way I am suppose to. Marriage what a wonderful thing. Try it you may like it, I tried three times, until I was taught how to behave myself.

Stay well and take care of yourselves.  Love You All!

God Bless & Keep You & This Country of Ours!
joe

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Alzheimer's is relentless!

Well it has been awhile since last i was here. Things in my world are getting very disarrayed. I find i cannot even be sure of what time it is each day or exacty what i am doing. Alzheimer's is working hard and i am still being stubborn but it is winning this battle, in the end i win. Mly head hurts alot these days and i do not know why asprins do not help it just feels like someone or thingh is n my head squeexing everything together.  Well maybe that is good, keeps my brain cesll together. I am finding it more difficult to post or even to figure out why i am at the compute most days. I sit and stare at it alot but it does not say anuthing to me, damned thing. I am totallly lost on the days now and even almost completely unaware of when someone is or is not in the house, i think they have just gone and they just got home or never left. Very frustrating and i do not even want to think about it which has be a bit miffed over things. i am rambling time to go be good to yoursleves.

God Bless & Keep You & This Country of Ours!
joe

PS, I guess things did not go well for Alan at Mt. Denali and he is off to number five now. I was told weather was realy dangeous on the mountain.

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I think this month will end, I hope!

Crap ass month so far, as some of you may have read my niece died a week or so ago and last week sometimme i lost my two prize KOI and then i am told I have orthostatic tremors, never say what the hellll else will happen.

Many of you know I was honrod to share the silver screen with six other lovely people in the HBO special, The Alzheimer's Project, Memory the Loss Tapes.  I considered us, although i never said anything as The Magnificant Seven.  Well Ms. Fannie Davis has passed on,I was advised today, i still need to get her pic and dates and anothers up on my Memorial Page.  I am glad to tell you that as of this afternoon Ms. Yolanda Sanmartino (the womaninthe mirror) is still kicking and doing well at Cherrywood Nursing Home. Just the two of us left, seems though we are all staying in the 8 or so year time line.

My book has made it to Europe, hopefully it will help someone over there.It humbles a pain in the ass like me that my blog, my story and my book have gotten so much attention world wide.

God Bless & Keep You & This Country of Ours!
joe

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Where is this day going?

I am sitting here trying to figure outt wher this day has gone so far and what did I do. I know I at least got up because I am tpying this. Things are getting more and more confusing and I cannot be sure of anything that I may do. I guess this is one of those what the hell posts, because I am not even sure why i am doing this. Plain fact my brain and i seem to be going more and more in diffferent directions. Maybe time has come for Lynn to post for me. I just tell her best I dna ow i am feeling and let her put it into words. At least the speeeling will be much better.
I am starting to feeel more and more detached from everyone and everything. Good old AD & FTD are hard at workand doing what they do best. Well later i am completely at a loss right now.

God Bless & Keep You & This Country of Ours!!!!
joe

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Alzheimer's = Millions Survivors = ZERO

Yep that is the score. Now what do you want to do about it. NO CAUSE - OF COURSE NO CURE - & MEDS THAT DO NOT DO MUCH.  Yes now they say it starts, the brain shrinking, 10 years before first diagnosis. New three stages, shrinkage, mild to moderate loss and final stages. These brilliant morons, sorry that is what they are, have confirmed everything I told my physchologist over 6 years agao. What these folks call Early Onset is not, it is mid stage.

I have been fighting the fight for years now, daily. I have lost on a daily basis. What is it that people do not understand? This Disease KILLS.............  When does the truth get told over the media, we are not mentally ill people we suffer from a deadly disease, get with it people.

I have grown tired of the battle and tired of trying to help the word get spread and fighting my own decline, I no longer have the physical or mental or emotiooonal strength or will to continue to fight. So no more from me. only that which I can remmeber happening each day and coming forth and trying to tell you, no more fight no more argumment, my time to rest has come, it is time for others to pick it up. People only want to hear from those that are nicey nice, well you all know me simple and raw to the point.

God Bless & Keep You & This Country of Ours!
joe

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Alzheimer's - The Miss Understanding of Many People

What follows is a statement made of Caring.com by a supposed, i use the term very loosely and with distain, 20yr Professional Caregiver.  Persons words just prove what I have said here, we are not understood and we need a voice, and not from the professionals.  My response to this very ill informed ass and Lynn's is there also.  Pleaase understadn that most of the people on Caring.com are really people who care and are trying to undeerstand and get good information not this type of pure crap and idiocracy.

"it's an illness, it's difficult but it's not ugly, horrible, demeaning, cruel.

i know that no-one i ever look after ever could remember my name, but i remember theirs. and i walk beside them. that's what caregiving is. it's not oppositional, it's walking beside who this person actually is now. it's about forgiving them for their illness."

Frena wrote the above. Well maybe if you had the disease Lady, you might just find out how ugly, horrible, deameaning, cruel and damnable it is. See I suffer from it, so do not hand me that load of crap. And i do not need yours or anyone elses forgiveness for me having this disease. Expert you are not, you do not live in this world. I and over 5 million people at present in thsi countyr of orus do.

Joseph

/this is Joe's wife, Lynn, I am surprised that he was very calm in the response to your letter. This is a disease. It is ugly and horrible. Nobody wants to loose their minds and that is what happens with Alzheimer's. I do not know of anybody that has this disease who needs to ask for forgiveness from you or anybody else. The people who have cancer which is a disease don't ask for forgiveness why should the people who have Dementia. Maybe you need to rethink your profession.

Read more: http://www.caring.com/questions/tell-parent-she-has-alzheimers#ixzz1ITq5Jin3


God Bless & Keep You & This Country of Ours!!!
joe

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Just added a link

just posted a post with a link to Ken's last post. The stinker uses voice software.  He suffers from Lewy Body and has recently joined our family here. Please visit him and say howdy and make him welcomed.

I have been busy the last few dayss or weeks not sure which it is and not really sure what i have been doing. I look at thiss new beast of humanity that I have, and wonder why, i cannt spell or remember any better because of it. But it has a 23" screeen which i cannot see without my glasses either, so what the frick. Today has slipped away from me again.i just do not know what to tell you except that things are not bettter and are not going to be. At present nothing seeems to be working out right, but then again i am not sure what is right or not anymore. I know i am becomming very indifferent, whoa a big word there, to most everoything and every one around me and basically do not care.  Dr. Joe Sivack i think wrote on his blog or i heard it somwhere who the hell knows that we in this world i live in really become who or what we really are, if that be true i hope it ends soon. because i do not like who i am now, by the way i am not sure of who that is any how.

i would tell you who these two are but their names escape me. not really it is my wonderful wife Lynn and that bastard she now hangs around with. The woman just will not listen to anyone. Taken ????????

God Bless & Keep You & This Country of Ours'!!!!!!!!

joe

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Brain Decay

Over the last few days both Lynn and i have ntice a dectease in my attention and ability to relate. am developing new language, but poor Lynn she understansd what I am trying to say, what does that tell you.

Also I referred to Alan Rogers,  well good memory joe his name is Alan Arnette, sorry big guy and he is.

Have a new guy Ken with us he has Lewy Body Dementia, maybe we can get him to blog here as well as his own, to help learn about his dementia. After all that is what this site is about.

God Bless & Keep You & This Country of Ours!!!!
joe

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My 300th Post - Mercenary This Time

As you may or may not be aware I have self published my blog through Xlibris Publishing and it was released in 10/2011. On the right hand side of my blog, yes I am promoting, hell I have to pay for this some how, you will find a new spot to buy my book, directly from me and I will even sign it for you. I got a limited supply from Xlibris at special pricing. The price includes any taxes and shipping costs for the price. If need be I will send Uncle Louie after you.
Some Humor Today:

EXERCISE  FOR PEOPLE  OVER 50

Begin by standing on a comfortable surface, where you have plenty of room at each side.

With a 5-lb potato bag in each hand, extend your arms straight out from your sides and hold them there as long as you can. Try to reach a full minute, and then relax.

Each day you'll find that you can hold this position for just a bit longer. After a couple of weeks, move up to 10-lb potato bags.

Then try 50-lb potato bags and then eventually try to get to where you can lift a 100-lb potato bag in each hand and hold your arms straight for more than a full minute. 

(I'm  at this level.)

 

 After you feel confident at that level,  put a potato in each bag. 

God Bless & Keep You & This Country of Ours!!!!

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Caregivers and Death

I was reading a discussion on Caregiver.com about people with AD & likes dying and the time it takes and how to handle it.  First I want to say that those who say celebrate the persons life are correct. To that I add do not morn for that is self serving and arrogant. Because I feel that it is only a self pitty thing, why am I alone now, they had no right, etc.

I said my good byes long ago to my family when we knew what was going on and freely talk about my passing. Quiet frankly I cannot wait. You see on this side of the fence we cannot escape any of the ravages in anyway but death, you can get relief and put us in homes how nice for you. I have in hte past expressed my feelings on these things, we are still kept silent and still put away. Well while I am alive and can I hope I promote some real thought over this home putting crap. I kind of understand, you are 78 and the only one to cae for your loved one, home may be or is the right place. My bitch is with the offspring, how would have it been when you got sick mom and dad just sent you away or sent you to other family members and they passed you on, because it casused extra time of your day to care. Think about it. I know my wife and I have been there every step of the way for our kids, sickness, catatrosphic illnesses, major accidents, arrests, drug and alcohol problesm we have seen them all but have been there, no matter how old they have gotten or how much we did not want to be involved, but they are our family and we do what families do, take care of each other.
I guess no one really hanlesd death well that remains behind, but just think of us that go ahead  of you we are set free, no more of the confusion, frustration, pain, forgettfulness, not know who or what anything or anyone is, no more diapers, rubber sheets, being hand fed or laying in bed all the time. I am wiery of the fight and now just let it work its job so that I can win in the end by passing. I reallly hate this feeling great and in control one moment and the nothing makes sense and seems to be real or knowing where the fuck I am or what I am doing.

I need to stop. Take care of yourselves.

God Bless & Keep You & This Country of Ours!!!!
joe

PS> to those that voted I applaud you, to those that did not and could have keep you mouths shut you gave up the right to say anything. Maybe next time you will get your head out of your ass and use your right to vote.

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Brains or Trains

I wonder sometimes if I have any brains left or if they are just trains runnnning in a circle. Things to me seem to be getting fuzzier each day. I forget mor of what I am going to do each day. Wife is up North visiting daughter and kids, I just could not take going after her 50th a week or so ago.  I found 32 good reasonss to commit homicide that day, way too much noise, movement, people, just a real grate on my brain, nerves and patience.

I am glad to see the going back and forth in comments and Lynn's posting.  We got one the other day that we discussed and both of us for diffferent reasons.  She could understand the people resenting the fact that the parents who are becoming a problem and like me, living another 5 or more years. Lynn feels that way about me at times and we both think it is normal and good to express it. You need time away from us guys to help yourselves. See I look at it that I may have to put up with those arround me hovering, checking, watching ever annoying me even for another year.  I wish they would just disappear at times. I think both sides feel this way, have to, we with Dementia are really a handfull, I think worse than trying to raise baby tripplets. See have the time I do not know what I want or what I am doing, just like a kid.

I want to say welcome to all of you that visit my blog. From Russia, US, Canada, Latvia, China, Brazil, Austrailia, etc., it boggles my brain cell.  Thank you all for visiting. I hope to be adding new resources to the list on the side soon for you all.

God Bless & Keep You and This Country of Ours (and the World)!!!!!
joe

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The very Fabric of This Blog

Anonymous has left a new comment on your post "talking it out":

Hi there Lynn & Joe. You two sound like such a perfect couple. I'm sorry to say that I am not feeling that way about my husband and I. My spouse is 17 years older than me. He was diagnosed about the same time as Joe and yes, he seems to be experiencing relatively the same stages that Joe is going through. But I must confess, I am not feeling like the pleasant, let me make you feel better caregiver right now. The TV can only be on one of the two channels he chooses, Fox News or the Weather Channel and he doesn't even watch them. He, like you Joe, stares off into space. I try to strike up any type of conversation by commenting about what they have just shown on TV but he wasn't watching it and has no idea what they were talking about. Then he gets angry with me because he is confused about my comments. Lately, he is always crankey and YELLING at me and our extended family (5 children, 6 grandchildren) so they don't seem to come around anymore. I do go to work part time but he is insistant that I not leave him for more than a few hours at a time and demands that I not go anywhere away from him for any type of enjoyment. He doesn't even want me to go shopping to get things that we need, only to the grocery store a half mile away. He makes me feel guilty that he is afraid he will die alone and that I must be with him at all times. And I don't mean just at our home, he insists I be in the same room with him ALL the time. People say to me that I should get out and do things for myself. I agree. But the reality of life is that other people don't include you when they know you have to be home with your spouse all the time. They don't want to be the cause of his anger either. So here I sit feeling so all alone in the same room as him. I provide his meals, cut his hair, do the grocery shopping, take care of our expenses and accounts, pick up his prescriptions, do his laundry and clean up after him. He refuses to go ANYWHERE. Will not leave the house and wants me to do the same. I do understand that what he is going through is very difficult. But there is never any expression of gratitude or even acknowledgement that this is difficult for me to go through also. He used to tell me every night when we went to bed that he loved me, but even that has gone. Now I only seem to be the object of his anger and frustration. But all the same, I will keep on keeping on. I won't give up, but it does help to have an outlet to release my feelings, even if it is to someone I have never met and never will.

Joe, please give Lynn a hug and let her know how much you love and appreciate her. Sounds like you have a real piece of gold to hang on to through this journey we all pass through. My love to you both.

The above is a comment shared on this blog in respose to a posting by my wife Lynn, who I am 16 years older than. This lady is suffering just as Lynn is, I have become very combative, pig headed, a dick, paranoid and more withdrawn.  I have asked many of you to be guest bloggers for the above very reason. I cannot tell you how many 100's of emails I have received just like the above comment.  See all I can respond to these people is that I am sorry for your mate and you, but it is only going to get worse, a lot of comfort right, wrong, but it is the truth. I ask again that you help with posting. See even if you do the same thing everyday, you still do something a little different and that little difference could help someone like this lady. Me i love and appreciate your words of encouragement, but really they are gone as soon as I read them. You see I know that I will not get better only worse and it is doing that quite well. I am on a journey to keep an appointment with mental collapse and physical death that is the reality of it. It sucks, i hate how i feel, i do not like my distrust and disgust with others, but my emotions are no longer mine, I even do not feel bad anymore when I am a real pain in the ass or hurt feelings, my brain says tough crap to you. I hear and see things now that are not there, i do not even know when I am being talked to. Sex keeps rolling in my brain but the old pecker does not help out and I even say who the hell caaares to taht. I am getting like my good friend Dr. Joe Savick, making a 42 paragraph post. Thanks for listening shit has hjust built up in me and while I am thinking of it I am making this post.

God Bless & Keep You & This Country of Ours.
Joe

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Reading Blogs

I spent sometine today reading some friends blogs and leaving my ever uplifting comments. But you folks that change your links, dam tell me so I can keep my list correct. I list you so others can read as well. Hopefully the remaining 6 people I have invited will have the balls to post and the others will continue.

• I would post daily if I could remember, but I start processing an entry and it starts one way, goes another, then turns left and winds up in the back forty, lost and me with it. Hope the changes are to you liking if not to bad, deal with it.
• Like a legal pleading now.
• Find days are slipping by quicker.
• The brain is getting bluer. Always wanted to be a blue blood, but I have obtained higher standards I am a blue brain, Ok a dumbshit.
• I was at my mens support group the other night, one of the guys there mothers has AD and wwe talk about it and he told me once that you could hardly tell, but his family insisted. He sees her every couple of months or so. Just got back and said he spent 4 hours with her and he was her brother and did not know what town they were in. He was a bit taken back. I asked is she about 4 years or so out from being labeled, he said yes and that she was on Aricipet (wonder drug, not). He asked me why and I told him the truth, she is on schedule. Also the A drug was for well toilet bowl cleaning in my opinion and many others. We hugged I cried for him and prayed for her to be set free soon. These are the real stories of AD not the commercials on TV or the movies, this is what it really does to us. Like a thief in the nite it suddenly takes what it wants when it wants.
• God Bless & Keep You & This Country of Ours! (The Rest of The World Needs Help Also)
• Joe

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