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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A different world

I know or at least think that many thought testifying in court was a big deal. But I had an attorney that ledd me through it, the entire eveidence package in fron of me and a judge that was just supper and helped everytime i sat therre with a blank and confused look on my face. Trust me that is why it took two days for me. Mr. Computer Brain, buned out circuits.

In case you are wondering what the big earth movement in Oceanside was on i think Thursday, it was the shifty old whale here hitting the deck as I tripped and fell over the cat. Not so nimble anylonger. Good thing have exxtra extra padding on my butt.. However ever since then I have been really having difficulty talking and trying to make sensse of things. Lynn says my face is lost when we talk or i look at her. Really i am lost and really do not like what is going on.

Have found out in round about ways why my voice is not listened to or my book received, I am just not gentle, kind and nuturing in my telling of this fucking disease. I guess i need to be more politically correct I think is the phrase, well bite my ass, there is nothing grand and wonderful of about having this disease. I have one thing for me though, I stand at the gate to the world of mine and about every 70 or so seconds I get to greet a new friend, shake their hand and hug them and welcome them to the darkside.

Dr. Joe Sivak will be in Long Beach in April promoting his book and Lynn and i hope to be able to make it up there to see him and maybe harass him a little those physcs need it.

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

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Who Am I Now?

I no lonegr know wo Joe is. It is like i have become two different people. Actually the same but in two different worlds.  I feel like the Joe I was is sitting up in the balcony at a play. And i see the actors on the stage and they are me and those I know, but I am no longer part of their world or they mine.The world they are in, i am all screwed up in and walkand talk in circles. But the Joe in the Balcony is who he once was, this is getty scarey now. I knew things would happen but not this. I am starting to progress faster each day and it is harder to get here to write and tell you.  I have a new computer, an all in one, so only a screen sits on my desk. all is wireless, mouse, keybaord, internet and i have a remote. built in webcam and mic, touch screen, boy can i scrtew things up with this. The voice recogn. prog. andme are having a battle, it spells worse then me. Once I get it down if I do.My posts will be written by it, so you will get all he what the f***ks and things as I forget where I am and doing.

Will be making book available soon in digital format for everyone around the world to get. have to addd to my buy button.and stuff.

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

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Early Onset Alzheimers

Yesterday my physcollogsit and I discussed this topic. Generally from time of this diagnosis till time to leave is about 8 years. Check the people that have died from the HBO special and the timeline and that of Sarge Schriver diag. in 2003 just died 2011. The list goes on.

We got to talking about the time period and EOA. My opinion only is that what is called EOA is not, it is more towards the middle stages. My reasoning, which is questoinable, is most of us are told when we start to notice things going wrong, oh it is STRESS, you are just DEPRESSED, you are DISTRACTED and you know the other bullshit. It generally is years before anyone really starts to listen and connnect the dots and finally does reall testing and oh well now you have EOA. I say no, you had EOA possibly for as much as 10 years befoer those white coats figured it out. Of course you had no idea, even though you kept on saying no that is not the problem this is. But of course you did not read page 89 of the med journal of AD and the box you have to fit in to have it.

Yes we both disagreed with each other at the beginning, but since his dad died from AD, he thought back and started to understand what I was trying to say, just maybe the real deal. He is a good man, shit he has put up with me for almost 6 years, so who is the sicker one! He asked me when I first noticed things going goofin and best I could remember I was around fifty, i could not multitask without notes anymore or even handle the number of tasks that I could and it got worse and worse. Of course i had SDD syndrome, right.

What I am trying to say while I am still somwhat together is, if you feel there are reall problems going on in your head, do not allow your doctor to just push it off as the SDD syndrome. You have to fight for you period.

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A Victory!

Thank You! Dear Joe, Soon, we expect President Obama to sign the National Alzheimer's Project Act into law. This is the largest legislative victory in many years for the Alzheimer cause, and you made it happen. We look forward to working with all of the various agencies to ensure this law is enacted in the spirit in which it was drafted. With a new Congress convening in January, we're eager to build on the momentum from this victory and hope that you'll join us. As we prepare to launch our 2011 legislative priorities we are asking you to please consider making a donation so we can continue the fight against Alzheimer's disease. A donor has graciously stepped forward and offered to match all gifts made to the Alzheimer's Association by December 31, 2010, up to $10,000. So we need your support now to allow us to continue our efforts to advance research, as well as vital care and support programs in the upcoming year. As leaders in the fight against Alzheimer's disease, you already know the stark realities: 5.3 million.  Americans who are currently living with this disease, with that number expected to skyrocket to as many as 16 million by mid-century. January 1, 2011. That's when the first baby boomer hits the age of 65, entering into an age of increased risk for developing Alzheimer's. 0.  The number of people today with access to a means to prevent, cure or even slow the disease. Yet our nation has lacked a national strategy to address this crisis. Thanks to your help, that stops now.  Throughout this year you have called on Congress, written the President, and signed the Alzheimer's Breakthrough Ride Petition to ask that our nation address this crisis. You made a difference and soon our nation will make a commitment to fighting this disease. Thank you for all that you do and Happy Holidays. Sincerely, Robert Egge Vice President of Public Policy Alzheimer's Association     The Alzheimer's Association is the leading voluntary health organization in Alzheimer care, support and research. Our mission is to eliminate Alzheimer's disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health.     © 2010 Alzheimer's Association. All rights reserved. Alzheimer's Association National Office, 225 N. Michigan Ave., Fl. 17, Chicago, IL 60601 www.alz.org | 800.272.3900

As you read you will see why I received this email.  Yes a victory to a point, I am not sure what. But I want you to pay particular attention to the part I highlighted in RED. How many times have I said the same. When do you folks raise your voices, This is a Call To Arms. We the Walking Dead need your voice to be heard loud and clear and without stopping.

God Bless & Keep You & This Country of Ours!
joe
http://LivingWithAlzhiemers.wordpress.com

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Posting Elsewhere

Yes I have been answering some posts on a site called Caring.Com, yes for so called experts and in my opinion some real whiny caregivers, but a good place for most of you to go for your help and discussion needs. Links will be on the side of my blog after this posting.
You all know how direct I am, so expect to be, being asked not to post anymore. I have not held back anything in my postings, to so called experts and the poor little itsy bitsy caregivers. Wine, need crackers & cheese. Come on this side of the fence, we have nowhere to go to escape except when we DIE, You can tell the discussion I got in really pissed me off. But that is the way it is.  I doubt how long I will still be able to post, we are entering that wild downward ride side. I loose people in conversations and sit idle at the dinner table so I am told and frankly I no longer remember yesterday, let alone this morning.
Till next tirade be good to yourselves and check the new links.

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

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No Title

The las few days have beeen really rotten. I have been confused, frustrated and a pure asshole. I have hurt my wife, not physically. But through being just a complete moron and ass and I cannot explain why.

I need ot openly appologize to her, just doing it directly has not been enough for me, I have to share it with another human being and my God for me to be free from it.

I am afraid this is a sign of things to come, havig real problems with conversations, remembering things, I just zone out and get really confused over stuff.  It is no wonder what I did really got to Lynn, she has so much to put up with me now, not to mention the prior 30+ years. I feel myself slipping more each day, so far I can for the most part notice it, but there are days I have no idea what is what. So I leave you for now, tomorrow if wonder lust here remembers I have some emails to post, that give hope to My World that there will be otherss to watch over us as we wear the current ones out.

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

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Last Night

Last night I found myself in very difficult and not likeable sitution.  It was a rough day for me as it was. We sat down for dinner and I put my food on my plate and completely froze. I had no idea what I was doing or what to do, my wife tired to help put I just told her leave me, she put my fork in my hand and it just fel from it, I was in a state of, in betweenness, between here and there. I finally started eating but with my fingers and slowly got back to where I should be. I am about 4 or so years into this and it is taking hold now as it seems to do about this time.

Now I am a beginning to become really concerned and not so humorous, but life will go on and so will I. I guess that line of no return is getting closer and sneakier about things.

Well that is it for now from: us here in Oceanside, CA.

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

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HE/SHE - HIS/HERS

Confusing title, well maybe.  See my wife told me the other day that one of the earliest problems I had after the diagnose was made, was keeping genders straight. Apparrently then and now when I talk about her I am talking about him and so on. Maybe this is why I never had much luck dating in my early years.

The last few days I have felt kind of lost in space and not sure of what I am exactly up to or doing. But I have not met any green people lately.

Will be attempting on working on changing my blog, the look and such, hopefully I can test it somewhere to fix the mess ups. Hope to make it so that those who read it can also blog on it. Maybe open some discussions or give some of you a place to say what you need to. Will see what happens.

Time to put my brain to rest again before it attacks me.

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

P.S. Do not feel like I do not appreciate your emails, I have been very bad lately at answering. Starting not to even turn this beast on anymore.

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Need Some Thoughts.

I know that a number of people with AD and other forms of Dementia read my site as well as a number of care givers. I had something happen to me yesterday that has me well shall we say concerned for what might lye ahead. I need some advise if any of you have experienced this.

I got up, nothing special, but I went about the day doing what I had to without any type of mental or physical interruption. My wife's computer has been giving her fits, so I spent 10.5 hours on completely rebuilding it and setting it back to where it should be will all files she lost. This all took place without skipping a heart beat. I felt completely in control and as if it were 7 or more years ago. For me I felt normal, whatever that is or was.

What scares me is, what the hell does this mean and is it something that happens at times, because I wonder if a bigger slide is comming and this was a sort of last hurrah.  Any insight would be helpfull.

God Bless & Keep You & This Country of Ours!

Joe

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Grandparents Again!

Yes at 10:26AM our 7th grandchild was born. His name is Lucas, by emergency C section. 2 months early. We are leaving for Petaluma, early tomorrow to help or do what it is grandparents do do.

Fish pond disaster after our storms, but what the heck we are fixing, repairs now on hold.

My brain hurts and is not handling this well. Till next time.

God Bless You & This Country of Ours!
joe

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New Studies - These People Are Idiots!

Yes that is my take on this. They do not have a clue to what they are doing.

NEW STUDY: Gist of the study is that those who have 5 cups or more of coffee each day can slow the onset and progression of Alhzeimer's. Now is what few cells I have left are working, I believe studies in not to distant past showed that this type of coffee consumption put you at a higher risk of Bladder Cancer. Well I guess drink the coffee, get the cancer, stop drinking the coffee and forget the cancer. Maybe I am wrong but seems to me, that spirits were part of this one.

Next & I Love This One: proves a point made in one of my listing.

Salk Institute scientists in La Jolla, CA: major incredible fantanstic break through. Of course we used GENETICALLY MODIFIED MICE:so normal humans won't work in this one. The GM mice "not only lived longer, but the onset of mental decline was also delayed". Reports Andrew Dillion of the university as reported in the North County Times by Bradley J. Fikes. This gets more interesting, I love amoloyids, they do not know what they are to do. According to Dillin (A Professor at Salk), their research shows that th plaques of these toxin protiens in those of us with AD and the like: ready for this: ARE NOT THE CAUSE OF THE DISEASE. Guess allyou PHDs outhere need a brain transplant. Instead and this is a quote from the article: "Instead, the clumps of beta amyloid proteins are how cells stow away the toxic proteins where they can't do damage, Dillin said."
Well now, rest of study is to be published in the 12/11 issue of Cell. Have not gotten to it yet.

I hate to rain on a parade but these folks are all over the place. This is why I am so harsh on them. They can not get their heads unstuck from their a****.

Cannot repair brain cells from what I know. So I see no cure, and all meds may slow down the progression no solid proof they do in at least 85% of AD patients, that I have found, more like maybe 20% if at all.

This is just interesting to me. You may or may not know that many NFL players over time have donated their brains for study, after they are dead to see the affects of all the concusions and blows to the heads they take do. In the group thus far checked of those in their 30,s to 50,s that have passed, it was noticed that, all though no signs at least know showed, but these guys had brains that looked like they had some form of Dementia for YEARS. just something interesting. So you folks know that I do try to keep up as much as possible on my disease and the tinker toy ways they are working on it.

Blast me, but these folks still do not get it.

God Bless You & This Country of Ours!
Joe

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Another Day in Dream Land!

where i get my titles is unknown to me. But it seems that my dreams and my reality are starting to be one in the same. I wake up hear voices, it is my dream entering my what ever you call it, I guess my here and now. It takes awhile for things to clear up. I am normally fine until this time of the day, after this 11:30 or so, the day just plain disappears on me. I no longer can do math by hand and mind, need a calculaor, pisses me off to no end. I had to leave twitter, sokule & facebook, could not keeep up with them. Hells bells I have enough problems with this thing. Had numerous on line business and affiliate accounts have closed them as well. Although things were witen down and all in a book organized, I got to confused and angry and just could not handle things. As of today the Joe that I once kew no longer exists. I am becoming someone else and I am not happy over that. Yesterday I turned 65 an age I never ever expected to reach or frankly wanted to, especially in my drunkin druggie days of my 20's. In my 20's did not know what the hell I was doing, somethings never change back in the saddle, no drugs or alcohol, don't need it now, brain is fucked as it is. Strange family was over last night but yet I was alone and am most of the time. Feelings towards others seem to keeep getting farther and farther from me. They are not leaving, I AM. I do not hear words right anymore, no car, problems with the bills and the check book, my wife Lynn can go to give me a kiss an it will scare the crap out of me. I forget who she is. So much for my babeling soon it will be Turkey Day, yes I will over eat and be in gastric distress big time. I even got some of the big words right this time, no red lines under them, look out. Bye for now.

God Bless You & This Country of Ours!
Joe

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AS ONE READER SEE'S IT!

userid = jpotocny
FirstLastName =
Email =
Message = why yu gotta be such a curmudgeon? i got on ur sight for some insight into the disease, my mom has it too. but i dont want to listen to yur ranting and bitterness.. not that i blame yu but i wont be bak. life is hard enuf for us without listening to someone elses negativity. i thank god my mom aint bitter and angry like yu. she so sad at times but othertimes she is happy too and like my own child. sorry for yu

Thank you for using Bravenet Email Form Processing!

(YES I AM CHEATING AGAIN USING SPELL CHECKER ON MY PART even used grammar checker)

As many of you know I invite all comments and emails. I publish them as received. So that you all know, I get many like the above. Of course I hide their identity on emails, but did not have to with this one, them, him, her or it, did not have what it takes to give a first name. This comes from the email block I have on the right side of the blog, so you can email instead of leaving a comment, if you do not want it published.

But I have not edited it, spells like me, because I do not change comments and the like. I have said in the past and still do, bring it on as you feel.

I am sorry that your mom has joined this ever expanding World of Alzheimer’s or Dementia. It is not a fun way to live. Try reading my blog from the beginning and then judge me. You got insight, but could not hear it, your ears and eyes are closed. You think with your heart, which is wonderful, but this disease gives a damn about your heart. It wants and is taking your mom away, like it or not. I am not bitter at the disease or people in general. But I am offended, slighted and angry with those who claim to know how we feel and are making progress. Progress in what? Same info we have now existed over 100 years ago so where is the progress, I keep asking and hear nothing but silence.

I do not enjoy this disease, it will KILL me period. Not only physically, but it is the loss of me that is taking place that just rips at my very fiber.
I say to you who will not return, yes you will, as you see what takes place with you mom. Here you will hear and have heard the truth from one who suffers and is declining. From others you can find the soft gentleness that you seem to want to hear, but not the harsh reality of it all.

If you have the chance to see the HBO documentary ,The Alzheimer’s Project, pay close attention to the time of diagnosis and the immanent decline of the people and how quickly it can come and see what is ahead.
You see Josephine just pasted away a couple of weeks ago. Of course Cousin Cliff passes in the documentary (for real). I do not know about the rest how they are but sure would like to know.

Well I have said what I needed to, I did walk away from the computer before doing this because I wanted to really strike out, but I still have some control over my emotions. Not very often but, once in awhile I manage. So before I go off in another direction Good Bye for today.

God Bless You & This Country of Ours!
Joe

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An Email Identity Secret

Message = Hello
I work at a local Alzheimer Society .......... My co-workers and I have been watching the HBO series over our lunch hour. I wanted to stop by and visit your blog.

Thank you for having the courage to share your story so publically. You have made such a huge difference for other people with ADRD because you have put a face behind this disease. Your story is particularly important because it shows that anyone can get Alzheimer's disease...even someone as accomplished as you.

Not everyone is interested in being the "poster child" for Alzheimer's disease (for lack of a better phrase). It is such a personal journey. Thank you for the courage and commitment to do this.

Our chapter is marking it's .... Anniversary this year. In fact we are having a ... on ....... with over 150 people attending it (i.e., to honour the occasion). There are so many people who have touched the chapter...be it person's with Dementia, their family, volunteers and staff.

There are so many people who are working towards improving the quality of life all of those affected by Alzheimer's disease. I know that each of them would send you and your family their well-wishes.

I have worked at the chapter for about half that time. During that time, there have been incredible strides in research and public awareness about Alzheimer's disease. It is encouraging to see this but we all know that there is so much more that needs to be done. Your story will bring much needed awareness to this disease and will help to move things one step further in search of a cure.

Anyway, I just wanted to say hello and THANK YOU!

Sending you and your family warm thoughts...

I have removeed info that would id this person to keep them anoynomous. I am using this email because I have received countless numebers that call me the face of alhzeimers and the voice. I am neither. Just a person with this fricken disease who wants to share our side of the story with you.

I have asked all of you for pics and dates of you loved ones that passted from this disease, as all of us with it do. I received one. So I will be posting it. You see those before me are the face and voice of this disease and should be remmembered and I want this blog to pay tribute to their fight for life. I get tired of hearing about all the big people who have survived this and that, big fuckin deal. We all die period. I am tired of all the crap about cures and how to stop this disease, well prove it to me with a survivor of it. No matter the advancements the real cause and any real treatment exscapes the med prof., maybe someday, I wonder.

I hope Bill's daughter does not take offense at the pic that I have because hers did not come through so I took one from his site. To me it shows the real heart of the man and how he felt about this disease and inate love of life.

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

PS: I received a very sad email of the passing of one in my World, but it is sad for the daughter, for mom she is free now. The whole left of years of caregiving will be difficult I believe at best to deal with. To you my love and prayers.

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A Special Request.

I would like to add a slide show to the side of my blog. I want to make this a memorial to those who have passed from this disease. So I am asking you to email me a picture of a friend or loved one with their name and birth and deceased years so I can make the slide show. I would like to honor those that have gone before me and paid the final price of this disease. Maybe their faces will prompt those who visit this blog to take some type of action or get involved some way to get those needed to help out (government????). I hope this is not offensive to anyone, if it is well then.

Thank you in advance. jolynn1@cox.net is the email to send to.

God Bless You & This Country of Ours!
Joe

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As The Weeks Go By

The last few weeks I have beeen working with others to bring more excitement to my blog
things I havve added, I once could have done in minutes by myself, they have taken days with help. Things are not well in my head nor do they seeem to be inside either. My shrink has suggested I go back to my physco. guy and my physician for some help. But I am a stubborn bastard and well you can guess the rest.

If I can remember why i have the note on my computer that says "BLOG" maybe I will post more often, even when I have nothing to say, which is gettting to be most of the time now.

God Bless You and This Country of Ours!
Joe

PS No brains, if David S. would send me the linke to his blog, use the email form near botton I would be glad to read & comment and tie to my blog.

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Who & What Am I Becoming?

There once was a tmie I could answer that but not anylonger. I have for the last several months porued myself into trying to start some things for the family to help make their financial future better. However, I remember the comment I made in the HBO thing, Once I was a genius, now I'm not. How true, it seems that once what I touched I mad work and well, now it goes to hell in a hand basket. My thoughts seem to be of the same charge and push each other out of the way, leaving avoid for confusion. That is the disease at work and having a good time of it. I find myself much more pissy and angry now, but I try to keeep the old trap shut and carry it alone. I am beginning to understand why we in this World of Ours, just sit alot and say nothing or just wander. We no longer have a grasp on things, what is real is it, I don't know any longer. I do not want to say things to family and friends because I don't want the constant hovering or them walikng on eggs. Frankly i do not know what I want, who I really am, where I have been or am going. Things from the past seem to be from yesterday and yesetrday seems to be the past. I feel truly helpless for the first time in my life. Where do we go from here? Down the tunnel.

God Bless,
Joe

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Through The Fog Comes Anger.

I have beeen reaing some of the blogs I follow this morning, which I can do from inside my blog. I get disturbed easily, especially by those in the "Medical Practice" and what they try to push. These are the very people (not necessarily the ones I read) that have told somany that live with me in theis World of Mine, that we were ok, just anxious, depressed and absent minded. See we did not fit in their fuckin little box, we did not adhere to pages 89-101 so we could not have any form of dementia. Now some of them have joined us in this world of ours and are bitching that people say they cann't have it because, THE BOX, is square not distorted. Mean this may sound but, you diserve to hear that crap your profession spit out at me and thousands like me. I make no appologies for letting you know how I feel, you see my life is worth just as muchas yours and I am loosing it more and more each day. It is harder for me to talk, walk and maintain train of thought in a conversation. I even forget who the people are around me more now. Probably by this time next year, if I am still around, my body will be here, but I will not. Alhziemers is doing its job on me and having a good time at it.
I saw a youtube asking fatso Oprah to help. This woman is only interested in her money and famous friends that may have this disease or know someone that does, than she does a show on it. It just discusts me to beg such people. It is us who do these blogs and what HBO did for us that is going to make the difference. Yeah the baby boomers are getting worried, WHY?, because a whole hell of alot of them are starting and will joine us here in the World of Forgetfullness. Where we these people when we cried out for help, toooo busy to hear us.
Wait till you look at your wife or children and have no idea why these people are in your house and what the hell do they want. Then the old mind comes back and you know you left, you want terror there it is. Come walk with me in my World and see how brown the grass is.

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

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The Grewsome Foursome!

Well I thought you should seem some of the folks respoonsilge for the HBO Special.

Starting on the right: Sherry the Nick they along with Elisa (not in the picture) produced Memory The Lost Tapes. Give them a bid hand for a job very well done. Next is Annie daughter of Josephine that were in the special. Picture was taken in LA at a priemer showing. The old fart, well he is not going to beat out robert Redford. He is the mystery person.

God Bless You & This Country of Ours!!
joe

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