Saturday, January 28, 2012

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!


Rotem said...


I get your frustration from this horrible illness.
If it makes you feel better there are so many people who care. I am one of them. I got the book you sent me and enjoyed reading it. I can mail you my project if you'll give me your address. I just wanted to say that i was touched by your writing so thank you so much ! :)

JUST A MOM said...

Joe I am so proud of your views and speaking them! YOU TELL UM! I ma re-posting this on my fb and on my blog,,, SOMEBODY/EVERYBODY NEEDS TO KNOW THE REALITY OF THIS NASTY THING! (((HUGS)))

NewKidontheBlogg said...

It is sure time for a cure--way overdue. Thanks for speaking our, Joe.

Carol and Herb

Karen said...

Hey, Joe! Good to see you all fired up again! And writing so much and so well. So the government doesn't care and the researchers are clueless. We all get that.

Joe, what matters is that YOU have given so much to so many people. Including me. The goal isn't a cure in your lifetime, or mine. Ain't gonna happen.

The goal is for you to just keep being you, when the veil lifts for a bit and you see the world again. We miss the fiery, funny Joe. I'm sure you miss him too. It was good to see him again this morning. :)

Keep on keeping on, my friend. We all love you and are rooting for you. Every day.

presstoe said...

Hi there Joe, it's Carey. I agree with what you're saying here. Yeah, Alzhiemer's is NOT a mental illness. First of all there is no mental illness that by itself alone will worsen to the point of death, and the medications that treat mental illnesses can work to reduce symptoms for an entire lifetime, not just slow the progression of the inevitable!

I know you want this to be over and I understand that, I don't know how I would want to go on if I were in your position. I sent you an email and I still think of you and wish the best for you and your family.

athletic said...

Joe Do not let people upset you. I know what you are going through I volunteer at Salem Home for 17 yrs sometimes with the terrace unit,CC,I mostly do activities,I give communion to 6 people and I am a eucharistic minister. Hang in there. I want to tell you that Butch Noonan passed away in 2010 from complications from AD.

House of Paints said...

Hi Joe, I just found your blog tonight 2/8/12 I hope you will continue to write. My Dad was diagnosed 3 years ago at 74 He was on aricept for 2 years and was driving and doing well with some minor decline, and then his dr wanted to put him in a trial - had him taking 28 milligrams of exelon, after 1 month, he nearly cracked up went in the hospital and then a nursing home, very delusional. He is stable now - back on aricept and well cared for in his new home, he is now in assisted living. But my mom misses him so much, he now has no memory of every getting married. Sometimes I wonder was it the exelon or the disease, will we ever know?

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