FDA Focuses on Early-Stage Alzheimer's, Seeks Feedback

The FDA has a new Alzheimer's-fighting plan. They are seeking public comments for the next 60 days. They plan to identify and study patients with very early Alzheimer’s disease, so they can be treated before there is too much irreversible damage to the brain. Learn why. Offer your input.

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Support Group Changes People with Dementia

VIDEO

In this video, "Voice of Dementia", see real people in a dementia support-group talk about their lives, their diagnosis and the importance of being heard.

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How Will You Celebrate the National Day of Service?

In 1994, Congress designated the Martin Luther King Jr. Federal Holiday, January 21, as a national day of service. Learn about opportunities to lend your support to the community of people living with dementia.

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New Year's Resolution: Be A Stigma Buster

VIDEO & ARTICLE

Learn about The Alzheimer's Society of Canada's campaign to bust the stigma of dementia. Discover six easy ways you can make a difference.

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Why Doesn't the Government Fund More Alzheimer's Disease Research?

VIDEO

Watch Harvard's Dr. Rudi Tanzi, a top Alzheimer's researcher, express his experience in working with the government towards a cure.
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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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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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Politician Tells It Like It Is

Newt Gingrich addressed the Alzheimer's Association as reported in this Advocacy Forum

"Between now and 2050, Alzheimer’s will cost the American government an estimated $20 trillion," said Gingrich. "Yet today, Alzheimer’s research is grotesquely underfunded. We need the scientific community to tell us the optimum they could invest in the next 10 to 15 years. What could they do if they had the resources they needed to save lives and save money?"

Gingrich gets the point you, Joe, have been making.

The Association also announced partnership with AIM (Alzheimer's Impact Movement). Go to AIM and you can find out how legislatures in your state voted on our issues. I plan to write our legislature individuals in Florida.

Hey, Joe, let's give them a heads up this week! Let's see if they follow through.

Carol

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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 - 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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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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Alan Arnette The Summit Climbet

Hi Joe,

It was great speaking with you. Here is the picture of me holding my mom’s picture on my last of the 54 Colorado 14,000 mountains. I will take this picture to the top of the 7 Summits as I climb them to raise awareness and $1M for Alzheimer’s research.

All the best,

Alan

 Alan will be attacking Mount Everest is a few weeks. It will be his third summit climb for Alzheimer's Awarness, fund raising and for caregiver support. I hope you all join me in wishing him wel. He is supposed to keep me posted on things and how they are progressing.

Alan has already accomplished what I have tried to for those of us that suffer to give us a voice, am i jealous, YES. He is giving a voice to Alzheimer's via his noterity for the climbs and the companies backing him. He has reached approximately 20 million folks so far, with radio talk shows, articles written and press coverage. He hopes to raise 1 million for Azheimer's Reasearch and the like.

Alan asked me if I would go to the mountains and I told him I did once and it looked at me and said "Fool Go Home"!

God Bless You Alan on your journey.

God Bless & Keep You & This Country of Ours!

joe

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Click on This Title

This post is from the Alz.org, forum.

click the title for the post.

Joe

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