Many Friends and I cannot Remember Them!

I have met so many people since I started this blog, and i am lucky if I can tell you five of them. There is Carol, who for some reason thinks i know what I am talking about. Dr. Joe Sivak who has gone on to greater fame and forgotten us little folks, i know doc i am a pain in the ass. My friends Mary and Jim who live in canada. I know there are many ofthers my email list shows it. Hey you old Navy guy Dr. Gordon, I still know you.

The last week or more has been a real doosey for me. I have ussed the old brain cell way tooooo much and gotten exhausted, shaky, a bit lost in time. I helped a friend redo his computer after it was totallly infected and that took a couple of days to retreive everything for him and my head hurt and i felt like a zombie. Tax season, somebody shoot me. Then I put Windows 8 onn my machine, nice program. But I did a refresh without finding out what that really was, my thoughts and its thoughts just did not agree. It cleaned my machine and I had to re-install almost all of my programs, in the process I signed up for stuff that my wife had to get me out of, I have been a mess, I do not even understand the notes that I have made so I do not forget, toooo much fog and dust up in the old brain.

I guess I should keep it simple but I have that inner pit bull in me that does not want to let go even though I am not winning at fixing and doing things. This disease Alzheimer's and the FTD, they hit hard when they punch back, a lot harder than I can. Wanted to let you all know for better or worse I still am being a pain in the ass to those around me, just doing my job.

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

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Hello

Yes I am still here you lucky people. Thought you might like to know that Yolanda from the documentary as of 15 minutes ago was still with us and fighting.

Things are getting screwery in my world. I know that the computer and calendar say it is 2013, but I am trying to figure out where 2011 & 2012 went. I do not remember them hardly.

We just got back from northern California visitig my daughter her hubby and 4 kids for a few days. My older daughter joined us with her 4, yess Lynn & I got a room for me to escape to. 8 grandkids and their parents is definetly more than I can handle. Extra drugs help but only to a point.

Physically things are still going the wrong way and that includes that brain cell that i have. If Lynn had not told me, I thought that I have been posting regularly, not so Mr. Brain.

I listen to all that they say is happening in research and trials as much as i can and actually i still not heard or remember if they have even come up with a definative cause for Alzheimer's.  Treatment does not seem to moved any further than a shot in the dark still. For me my world seems smaller and lonlier, my brain does not seem to really take in things around me anymore. Sleep and just stareing at the TV seem to be all that hold any interest no matter how hard I tried to pretend that I am with it. Oh well It Is What It Is.

take care until next time.

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

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To all those on the East Coast my prayers and hopes go to you in your hour of need. Only you know your real pain and frustration with getting the help you need. It will get better I believe that, just stay fast and believe. Hurricane Sandy left you in one hell of a mess and I wish I could change that for you.

I have been home now about a week i think. I have been informed that my timeline of our trip is a bit screwed up and locations, that does not surprise me. Time and days all seem to be the same to me and have ben for some time now. So I guess at the day. Loooooking at the alendaes not help, since i donot know what day it is. I am still very tired from the trip, but glad that my daughter got to check off of her list somethings she has wanted to do.

I am really confused with this disease, my short term memory of late seems betterm but my long term seems to have gone on vacation. Alzheimer's truly affects us all differently but still progresses to its final run.

Many of you know that all this rah rah rh about bresast cancer burns my ass, because the main stream seems to not care about us. I want no one to get cancer and surely not this disease.  Here is my problems did some reasearch and found out form the CDC and Breast Cancer.org that in 2011, 39,250 people died from breast cancer, that is both MEN and Women (mostly women). Yes men we can get it also. That was another 3-4% decrease. Frolm the CDC and other agencies that collect this info that in 2011 somewhere between 82,435 to 83,208 people died from ALZHEIMER'S, both men and women and ladies here is the kicker your made up the majority of those deaths.  So again I ask: Which is more important BREASTS or YOUR BRAIN? For me take my breasts and my genitiles and leave my brain alone, but at last I and millions have no chance for a cure or real help, Think about it.About 78 seconds each day another person is diagnosed with Alzheimer's, they receive their double Death Sentence, first there being then their life.

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

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My Friends.

today has been a rather calm day for me. after the last few weeks it is much welcomed. i still do not sort things out well, but i am a bit more aware i think this day. i think i have acquired sleep life away syndrome. I get up about 8 am do my morning stuff sit down and it is noon or one oclock already.  Next I know it is 4 or 5 diner time. Yes i sleep about 7 hours at night, but tht does not seem to matter. I have sat down a number of times this week to post, but as usual i just go dormant and cannot remember what i want to say or why i am at th computer. Lynn handles the check book now. I have to contact the DMV license renewal time. Although i do not drive anylonger, they will probably not renew my license, test and i will not get along. Just another part of one's life taken away by this fricken pain in the ass disease.  it is getting harder to keep some sense of humor and my mouth shut. It is what it is.

till next time take care of yourselves.

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

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There is a new community some of you may or may not know of now on the web. I have joined it,  it consists of people involved with Alzheimer's, sufferers, caregivers, etc. It is called The Alzheimer's Community   , you can register and join, of course it is free. Come take a look and help spread the word.

My world has been very mixed up lately. I really do not know what is going on in it much anymore. Lynn has to do the check book now, even the calculator does not do what i wnat it to do. Talking is becmoing one of those one time I knew how to do that and make sense.But that is the way it goes.

I sit here and have all these things to say and when I go to they go somewhere other than on this page, it pisses me off. Making a decisssion for me takes alot of time. So much that I forget what it is that I am trying to answer or do.

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

I just remembered something, I have noticed that most of my so called friends have disappeared from my life, just as they did when I stopped drinking. Quit being a drunk and loose your friends, have your brain eaten away loose your friends, seems interesting.

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Where the HELL is my brain?

The last couple of days have been really a fricken mess. Right now I can think kind of stratight. Over the last days I have forgotten what i was doin, how i got where I did and from where i got there. Talking has been utterly confussing even to me. I have needed help in getting around physically, legs did not want to work, when they did they wanted to go somewhere other than I was headed. Good things for walls and hand rails or I would have surelly met the floor. That damned thing kept moving on me. I feel like a plane, i have to make a wide circle to get to where i am goinging. Things seem to be happening quickly now, with more and more bad days and days i cannot remember. I can no longer tell you by the evening what I did in the morning , let alone yesterday and the past is fading as well. I am starting to feeel best just sitting in quiet and not talking or being talked to or having the boob tube on. It has become dangerous for me in the shower. Good thing it is not real wide or I would definitely get swaying from side to side and go through the doors. Even sitting on the seats we have in it has become an experience as my wet ass slides off and old shaking legs can barely keep me up there.

Till next time, be good to yourselves.

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

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Me and My Friend Alzheimer's.

Of late some of you have yelled at me in emails and comments. Apparantely my fire has gone somewhat. Well you are right. I hate ths fucking disease. Alzheimer's is robbing me of who I was, i am constantly lost is a maze in my brain.  Lost in conversations, seems this is my only way of real contact. I walk like a drunken sailor, my hands and feet hurt, my body trembles, i cannot see very well anymore. I try to keep a sense of humor but it is becoming more difficult.

You all have a feeling of my thoughts towards the Alzheimer's Organization, well Mr. Robert Egge, VP of Public Policy wrote me and i am sure others to watch howdy doodies State of the Union for his push for NAPA and Alzheimer's because Obama cares deeply abouth this. WELL gues what not a word or a whisper or passing comment about it. Got another email from Egge stating disappointment but to wait for the buget and how we may shine.  These people have no clue, we with Alzheimer's are not important to this government and society at large.  I mean i get all these emails about this vitamin this herb and even coconut oil to help retartd the damange and help. Horse feathers, this shit may work for a very, very, very few for a short time 6 mos to two years and then they hit a brick wall. No more functionality, quaks go away. ALZ a cure by 2025 not on a hot day in the summer. Idiots do not even know what causes it. Loook up the studies, tey all contradict one another. I will say it agin, WE HOLD THE KEY, come to us for the answers, get the hell out of your little square boxes and see the reality.

People say Joe you are wrong, the prove it to me, show me the one person that has been cured or givn 5 to 6 more years of life because of the so called wonder drugs and herbs, etc. All my friends that have taken this crap have deterorated and even died in the 8 year time line. In 3 short years the seven of us is the Memory The Loss Tapes and 2 in the Caregiver Part of HBO Documentary The Alzheimer's Project, only TWO of us are alive today.

Yes my life sucks just like the others with this disease. I want it over, i know what still lies ahead and it ain't the golden years. Yes more people are speaking out, but they have money and prestige on careers so they are important. The people in the know say there are over 5.4 million of us in the US, According to the American Health Assitance Foundation approx. over 500,000 will join us in 2011. Well now I bet there are over7-8 million in this country in this world of mine. All those that are hidden and not talked about shoved into the darkness because this still is widely seen as mental illiness rather than the disease that it is. I know organizations are getting out the word. We do you people unite into one voice and let it be heard through out the land?

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

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From Sunrise Senior Living

an email i received thought you might be interested.

Message = Hi Joe,

Sunrise Senior Living has just published a new guide for Alzheimer's caregivers.  You can access/link to the Guide here: http://www.sunriseseniorliving.com/caregiverguide/

The Guide is part of a full slate of programming around World Alzheimer's Day.  On Wednesday, Sunrise is inviting caregivers to attend free information sessions at its communities across the country.  Here is a link to more info: http://www.sunriseseniorliving.com/ResourcesToRemember.aspx

Please let me know if you have any questions.

Many thanks,
Lanna Nguyen
for Sunrise Senior Living
(202) 775-0200

--------------------------------------------
Visit the new Sunrise Memory Care Blog:
http://www.sunriseseniorliving.com/MemoryCareBlog

God Bless & Keep You & This Country of Ours!

joe

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Your Help & Advice is NEEDED.

I have a decession to make and i am asking you to help me with this. Now i know many of you do not leave comments or only once in awhile, i have found that person anonymous on my site, you know the one that tells the media something or politicians heard it from. But however you chooose to answer please do.

Some of you may remember the short clip in my tiny part of The Alzheimer's Project, where me and my phycologist were talking, he was the good looking young guy with the nice hair.We met the other day, yes i still see him, the poor guy needs help with his car payments. He is very aware of my blog, the documentary, my book and the number of people you have helped me reach. If you use the resources on the side and go from one to the other and use there resources you will eventually reach over 1200 sites for caregivers, information on various forms of dementia, different blogs of those suffering, charities and the rest, all because of suggestions you have passed on to me.

Here is the skinny as they say, whoever they are, Dr. Cain has suggested tapping my sessions now that thingss are going to hell in a hand basket and posting them on my blog. I can post them there or to my You Tube account. You all know i hold nothing back and some of ours sessions are alot livelier and wordy then my posts. He has no problem with it, i have no problem with it, Lynn is undecided at this thime.  We are thinking it will give a better face to the disease not just words, but you get to see my Bright Shinning Face and drool I know it is tough being me. But you couls start to see the true reality of this bastardly disease.

YOUR COMMENTS AND THOUGHTS PLEASE!

God Bless & Keep You & This Country of Ours!

joe

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