Showing posts with label thoughts. Show all posts
Showing posts with label thoughts. Show all posts

Tuesday, May 10, 2011

Yesterday i had blood drawn for tests for my physical next week. Then I spent the rest of the morning with my phsycologist . It was interesting, i have seen mim for nearly 7 years or so with breaks. We were talingi about the so called new advances in Alzheimer's and the new guide lines for diag. and treating. Funny part about it is as we talked he remembered I had said most of this years agao. And it has been posted on this blog in various forms over the years. I dound that all to be interesting that these so called experts only needed to talk to me or someone like me with the disease to get these startling new ideas and would have cost nothing. But what the fuck do we know, we are sick and mindless. But it does add credability to sites like mine, that we know what they cannot figure out.
I had another doctor write me recently, and the gist of what he said as I could understand it and questioning him on what he said is that he basically in simple terms agrees about the profession, and pharma companies, they all have their heads up their collettive asses and only promote drugs for money sake, because no matter how you want to cut it, the drugs DO NOT WORK! It is still about 8 years from diag. to the end drugs or no drugs. Our paper here had an article today about a former mayor, whose wife was diag. 7 years ago and just died. I know we hear about the 15 to 20 year sufferers, but they only exist because someone was smart enough to notice it in its infancy stages. The ten or so years of true EOA which most pros call DDSS, my term for Distraticed, Depressed, Stress, Syndrome.
I have my moments, what is difficult is getting what is in my brain cell, down to my fingers and then getting them to type what it is that is their. I have to do it quickly or if I think to long ( 5-6  seconds) it is gone and never gets said.
I know from some mail i got i insulted the Alz.org, but i want you to know that was intentional. Yes they help caregivers, they have done shit for me and I have contacted them many times. Even my local San Diego Chapter, who I gave copies of my book to for their lending library. And they wanted me to help with things and with the State, YES YES YES i said. Their ultimate answer and reuests have been complete silence, and I have heard this from others, including some Drs. I know their are good people working for them and my attack if you will is not on them, but what seems to be an organizzational lax of understanding the sufferer. Oh yes they know it is not pretty, but it does not seem that they have the first idea of the real terror in our minds and the loneliness and the difficulty we have telling anyone, because we know you do not know or understand this hell, you are not in it.
Time to shut up, i am getting to angry and feel like telling most everyone out there to fuck off, but we are family and I need you and I think you need me also while I can spout off and make some sense.

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

Tuesday, March 8, 2011

Alzheimer's may start in liver

New Study released. Who know's. I wish i was a mouse.
They seem to have all the luck. Clicking the title should take u there.

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

Monday, February 21, 2011

Old Mems and New Ones

I have found that old memories aer stil there but they have no time stamp you might say, I can tell you about them, but part of the probelm is that two or three may get mixed together, facts are pretty good, but knowing exactly  which memory they belong to, well you have to guess. New memories, I have only about 2 days worth, they do not stay for long at all. In fact have trouble with telling you about this morning even.

The wife colored her hair today, did it this morning so I am told, I did not notice.  Later we were up in our office, that sounds so officey doesn"t it, just a extra bedroom with the computer.  But that makes us Yuppies we have an office. I was looking at this woman in front of me and knew I thought I knew her but something was not right. I had her turn around and finally my mind put back some old color in her hair and I knew it was Lynn. Said you colored your hair, YES, when this morning, oooh i said.

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

Tuesday, February 8, 2011

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.

Tuesday, November 9, 2010

Just A Note

This is to let you know that my book is now available online at Amazon.com and BarnesandNobles. Kindle and Nookbook electronic downloads are available as well.

This Saturday past, we had a Memory Walk here in Oceanside and it went well. Old fleet of foot here sat on his fat you know what, bad feet. Did get to me a wonderful lady, Cheryl, who lives in the area and follows my blog, nice to put a face on a name.

Bye for now.

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

Monday, October 25, 2010

Happy Monday To You.

I have added a link to my book for those who are interested. At present it is only available is soft & hard cover. Within the next 2-4 weeks so i am told it will be available in electronic format for you Kindle folks. At That time the bugger will be available at Amazon.com & BarnesandNoble.com, as well as my website and other locations.

Now that, that is out of the way, today sucks, I am having trouble getting things from my brain cell to my mouth or fingers and once it gets there they don't know what to do with it. I feel like i am starting to reepet my self more and more.  My family bless them say its ok dad we know. I sure would like to know what it is that they know because I do not. Doing this blog is getting difficult. I have these grand things, I think to say and my brain farts them away. I have problems with titles that have antynig to do with the post. I think, that is a joke that their maybe no more titles.

How does one tell you how uttterlly difficult it is living in this World that I am now in. Cann't drive, cann't balance check book anymore, forget my pills, forget the bills and now I get up from the table leaving my dinner because I forgot I was eating.However my bowels and I still are on the same page, way to often, but still together.

You take care now.

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

Thursday, September 30, 2010

TO BE CONTINUED-------------

Well I am back today. Hope you all are well.  My day is a bit foggy and slow, but that is how things go. It is cool and rainy here, rain part very unusual for us, but welcomed.

Now tehn since you have wiated with great anticipation, pounding hearts and sweaty palms here is what is going on. First can you guess why the title to this post? Bet your wrong.

Living With Alzhiemer's (A Conversation if You Will), is in the process of being published. All of you have made this possible and have contributed in one way or another to it. Hopefully it will be out before xmas 2355, you know how slow and forgetful I can get. The Book as it is called, is not a novel or such, it is our conversation we have had over the last 4 years I think. Completely unedited and to the point. Yes it is this blog in print, comments and all, except the side materials as they appear.

So to you all Thank You, for your support, caring, sharing and just being there as I make this journey.

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

Tuesday, September 14, 2010

As The Present Fades

I am still amazed at this point that I can still converse with you and tell you how things are going in my journey or battle if you will. In the beginning and still now i am prepared for the mental walkings and goings but I was never prepaired for the physical problems.  Walking with a swagger, actually kind of a stumble and hunched, feeling icky most of the time, getting exttermely upset around people and sweaty like a pig, shaking like i do, not able to hold things all the time, just not ready for this crap.

I find my world in fading in and out now. I recognize family and people and suddenly they start to become someone else. Same person standing there but my brain seems to switch off and step back and say who the fuck is that. I am finding this to be happening more and more, I feel like i am fading away from Joe and going somewhere and I cannot stop it anylonger. I really wish I would hear from others in this world of mine and what they are going through and how they feel. It is really a lonely place, yes I have people around me that care and help, not the same, they are not here with me, in my reality such as it is.

I must go now my mind is confused and i am getting very angry.

God Bless You & This Country of Ours!
joe

Sunday, September 5, 2010

Waking Up What Is It?

I have come to belive that waking up is not all that it is cracked up to be. It seems that I never seem to wake up completely anymore. I more or less remain is a state of awakeness if that is a word, if not it is now. I just never seem to quite get with it anymore. I am becoming much more testier and argumentative, wow I think I spelled that right.  Time is more jumbled now then ever before and I have more difficult in getting things out and what the hell i do no t know what i whant to say here.

I no longer enjoy being downstairs in my home, only outside in the front or back or upstairs, i do not know what it is, i am very uncomfortable now. We just spent I do not remember how much when remodeling downstairs the way we wanted it and I do not want to be down there now. I do not understand me anymore. Lynn wants me to talk to her and I cannot even talk to myself. Hell I always talked to myself, I was the only one that had the answers I wanted to hear now I cann't think of them.

Well take care for now.

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

Friday, August 6, 2010

Asking for Help & New Link Added.

I have added a new link, Nursing Home Abuse, for those of you that may have problems with a nursing home or need help in finding and how to look for one.  Do hope that this will be of help.

I am glad to see the comments of help going back and forth, this will help you I think and hope. This is what this blog has been waiting for.  Out of the avg of 179 people that visit each day, I think some of you have great wisdom to offer each other. For me, getting better is not taking place, getting worse is and will till it kills me.

You all know I just love the medical profession and researchers with great and profound moranity. I got a mailer the other day, Alhzeimers cured and the cause, medical book supposedly. AD caused by lack of insulin in other words diabetes of the brain. The gist is that extra insulin can halt or even reverse the damage. A lot of quacks out there, amazing that this one dr. has found this out and has not shared it with the medical community but is with the world.  I think I will go have to cokes so the caffine stops my AD.

I need some help or at least to know if any one with AD out there or caregivers have noticed this happening:
For a cpl of months now I have been experienncing pain in the brain, this is not a headache or migrane as one knows them to be.  It is like someone with really big hands is reachin inside my skull and just squeezing the hell out of my one brain cell, trying to make it smaller. This can last for hours to days, even longer once it is gone I notice that more of me is gone.  I guess the details I follow because of my employment was in the field of computers and data gathering and details, still with me to a degree. Have talke to my shrink and pyhsycologist about this and get a dumb look. So you folks my family if you have any info on this I sure would like to know about it, I feel alone enough now without being the only one with this bull shit.

Monday, June 14, 2010

Today I am not clear ast to what i want to say. It is becoming difficult for me to keeep my thoughts in order, as if they ever were. I am becoming more distant from my family, I feel very trapped by everything. We went to the Birch Aquarium, I think it is called, in San Diego on Friday, it was fun, but to tell the truth I was not really part of being there, although the lady at the sharks was interesting, but you know my wife, she would not let me bring her home. I am having more diffficulties with talking to, seems to come out sideways, good thing those around me have a clue to what I am saying, because I don't. I have been watching and noticing all the things now that they say will slow down your getting AD and all the things that cause it. It just leads me to believe even more so that these people are morons and have no idea what they are doing. In most cases giving people false hope and bullshit answers. Kind of sounds like are President and Congress. What the hell most of them went to the same schools anyhow. Well I am rambling, getting good at this. Also have changed the site again and probably will still more, gives me something to do and screw up at the same time. Well bye for now.

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

Tuesday, June 1, 2010

Expectations

I have been doing this blog for a number of years now. Trying to tel you what it is like on this sid of the fence. I am begining to wonder if what I am saying is getting old and has no meaning. See I belong to a group study and we have a saying, "EXPECTATIONS ARE PREMEDITATED RESENTMENTS"! I feel those resentments because I seem to get far less comments or emails. That is my proble because I am expecting something in return for my posts, really I am not entitled to any replies. This is my story with the disease and only my point of vew, such as it maybe.

I met with my shrink today and we kind of got into it and I told him you do not know what is in this world in which I live now, you are on the other side, you are one of them. I know that my progresion has been seemingly slow and I have been well contained for lack of another word. But that is only because of the brain power that I possed when this all started, I could control a lot of what was happending and hide it, I am no longer able to do that, it (AD & FTD) are doing their jobs very well now and the fox can no longer out run or manuver them. Thank goodness my friends and family are around to guide me or I would be totally lost. I do not even want to leave my house anylonger or really take part in life, I am retreating into myself where I feel safe. Whether this is part of the proscess or not I do not know, all I know is that it is happening.

Take care of yourselves.

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

Saturday, April 24, 2010

Me a Tyrant?

Really now, such a gentle wonderfull and forgiving person as I, a Tyrant. The truth be known I can be a little, just a little over zelous at times. Ok maybe tyranical to some degree. Lynn is mostly correct in what she has written although I am not sure if I even am with them as much as they may believe.


I feel things slipping more and more away from me. Going out has almost become a big no no with me. I do not want to leave my security. On the other hand I no longer want to be in this house. I feel like I have done here what I was suppose to and I am now to move on. It is a feeling I cannot explain, it is like a driving force that pushes me to do whatever it is that I am to do. Writting and talking about it does not change it, it is there and it is real. Before in life I did not hesitate to follow it. Now I am confused and frustrated over the feeling and lately very unhappy over things. I guess this is part of this world I live in now, no longer sure of feelings, thoughts, direction or security of where I am. All I know is that I am here stuck and not knowing when to get off the bus at the correct stop.

I wonder or should I say wander within my own mind what is taking place, why, where and how do I get around this bastard that is following me and sucking my thoughts away. Who am I today, not who I was 10 years ago I think and not even sure of yesterday. Yesterday is a strange word to me, since everything happend yesterday, not last week, years ago, but just yesterday. Family and friends around to help, yes I am lucky that way I guess, but they fuckin piss me off, I feel that they hover, whether they do or not is not the point it is how I feel and it makes me feel trapped.  Now if they didn's I probably would get angry that no one gave a dam. No fun in this brain these days.


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

Saturday, March 20, 2010

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

Wednesday, January 20, 2010

Couple of Things.

Well I am back here at the monster again.

I am still asking for those of you who would like their loved ones, friends, etc. who have passed from AD to send me their picture, first name, birth year and year of being set free. As you see so far only 3 people have felt that their loved one's should be honored, what about the rest of you? Yes I can get snotty.

The chatroom will disappear soon, I only paid for it for a year and I do not know if anyone has used it, so goes life.

Also NOTICE if you have skype on your computer, headphones, microphone and speakers you can call me free just click on CALL ME button. If i am on we will talk.

Things in this world of mine are getting a bit out of touch with me. I feel like I am beginning to seperate into two different folks, the one who knows (as if I ever did) what they are doing and one who hasn't a clue.

We finally finished our second KOI pond, Sept to now, not bad. Waiting for the season to warm up to bring in new fish, lost ½ of my others. Home projects I still like but they are becoming very hazardous to me. I built a square box around the pond for cemment so that the pavers vor the patio could be laid straight and shot my self in the finger with the nail gun. Then while laying the bricks one by one and setting them I smashed the same finger with the mallet, of course I really warmed up for that brick setting. Finally has feeling coming back in it. Golden years, kiss my butt.

Wife is now home with me for not sure how long, I guess until she cannot take me anymore or I send her back to work. Wants to do toooooo many things. What a pest, but I love her, so sorry guys I am keeping her, in it for the money now.

I am still amazed at my friend Mary in Canada, how she posts almost daily, I just cannot get it together to do that.

If you have a blog or website, that is not in my lisk of links and want it there email me jolynn1@cox.net with the name and I will enter it. I do follow alll the links I have, in the back part of blogger you can list those you want to follow and you get continual updates as people post, really neat. I just need to comment more, get to involved then forget what I am doing and walk away in disgust,

Well before I babble a brook you all have a great day. I am going to hide from the rain.

God Bless You & This Country of Ours!
Joe

Wednesday, November 25, 2009

Happy Turkey Day!!!!!!!

I wish to you all a very Happy Thanksgiving. Eat well and stay safe.
Webfetti.com



I was thinking of this now and felt I better post it before I drift away again this day. My thanks are for all of your support and comments.

God Bless You & This Country of Ours!
Webfetti.com


Joe

Sunday, October 18, 2009

Freedom Rings Once More!

Thursday this disease took another from My World. You know it takes owr minds, it takes our emotions, it takes our feelings, it takes our abilities, then it takes our last breathe. But what it does not know iss that it returns it all to us and sets us FREE from its crips. Yes from the grips we snatch Victory. To you my friend Josephine, I can hear you sing your song of Freedom, see you running through the tall grasses under the blue skies. I was blessed, I got to share the big screen with you, but for a moment. Now I know you are free and it brings me hope. Annie God Loves You and so do Lynn and I.

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

Tuesday, September 22, 2009

Alhzeimer's & Marriage

I received a comment from a gentleman whose wife has early stage AD. It seems this has affected his marriage quite a bit. Trust me that is an understatement, it has litterally screwed mine up. I have asked my wife to post her side on the blog, but she is reluctant for whatever reasons.

I know that she has one heck of a time with me, I am extremely moody at times, I get lost in conversations and I go off elsewhere in my mind on a dime. The other day we were talking and as usually Mr. Brilliant here got lost and could not even get a word out, the wife answered for me and was right. Her words to me were "Aren't you glad I know you?" my reply was yes someone has to because I do not know me anymore. This is starting to get scarey now. I have been going to post for the last couple of days, just does not happen. It certainly has messed up our sex life, I cannot even keep things going, because my mind suddenly goes off to War, or the Circus or some such fuckin thing and I am no longer involved in the situation or I just plain fall asleep.

I cannot even imagine how my commentor or my wife feel. I am not even sure how I feel at any given moment. At times I am on my game and then there is no game I have lost my processes and cannot get back. Yes I can write because I can stop and come back and start over, but in my real world it just does not work that way.

To my friend I am truly sorry for your situation, I will not say Hey it is ok it will be fine, because the truth is it will not get better only worse. I do hope the Lord continures to give you the strength you need for each day, we are a hand full.

God Bless You & This Country of Ours!
Joe

Tuesday, September 1, 2009

Pushy Friends!

I am glad I have some, they help remind me of what my postit notes seem to fail to do. I have not written in while. I have been elsewhere lately, not ecxalty sure where, but I have been there. Getting more tests, health is well not what is used to be. Age this disease, rotten lyfestyle when I was youndger who knows, I do not. What is starting to show more offten then not, is I have no idea what day it is and yesterday seems not to have happened. Hard to explain. But there is no longer any time frame in my brain to connnect things to, so they all seem recent and mixed up. True moments of knowing exactly what I am thinking or doing are growing fewer by the day. This is not a lot of fun and am starting to looose my humor about it. But I am getting to meet someone new each day in the mirror, so I guess that is ok.

God Bless You and This Country of Ours!
Joe

Friday, August 14, 2009

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