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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New Findings - Interesting Support The Cause!!!

Bulletin from the cause: Support Alzheimer's Research Go to Cause Posted By: Fisher Center To: Members in Support Alzheimer's Research Significant Finding in Nine Months by Fisher Scientists Scientists at the Fisher Center for Alzheimer's Disease Research at The Rockefeller University, led by Paul Greengard, Ph.D., and Jennifer Warner-Schmidt, Ph.D., have shown that anti-inflammatory drugs, which include ibuprofen, aspirin and naproxen, reduce the effectiveness of the most widely used class of antidepressant medications, theselective serotonin reuptake inhibitors, or SSRIs, taken for depression and obsessive-compulsive disorder and anxiety disorders. This surprising discovery, published online this week in the Proceedings of the National Academy of Sciences, may explain why so many depressed patients taking SSRIs do not respond to antidepressant treatment and suggests that this lack of effectiveness may be preventable. The study may be especially significant in the case of Alzheimer's disease. Such patients commonly suffer from depression and unless this can be treated successfully, the course of the illness is likely to be more severe. Depression in the elderly is also a risk factor for developing Alzheimer's disease and researchers have suggested that treating depression in the elderly might reduce the risk of developing the disease. LEARN MORE: http://www.alzinfo.org/04/articles/fisher-center-scientists-show-anti-inflammatory-drugs-reduce-effectiveness-ssri-antidepressants Call to Action Support the cause. Be counted: I Read This

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

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The Physical Aspects of Alzheimer's

By now i wolud think that we all know about the mental trials that allll of us with this disease go thru.  Not remembering people, turning around and meeeting a new friend each time, wondering where we are, who you are, where is home, my glasses hell where are my pants.  Forgetting to use the bathroom timely oooh well. Spending and forgetting we did it, driving those close to us to exhaustion and we do not even realize it and in most cases do not care.  How rotten we can get and next minute the world is rosey to us and you have the problem. The list goes on and on and on.

But there is another side to this story, not being able to walk right anymore, cannot drive because forgetting what to do (our freedom is gone). Tiring easily from practically little effort. Standing one moment the next investigating the dirt on the floor or cracks in the cement. Trembling a good deal of the time, eyes get worse, food tastess funny, sleeping is a joke, not at night we go to the daytime, walking into things because we do not see them, winding up with cuts and the like because we do not realise that we have been injured, not eating just because. This is the other side of our world and much more but my brain cell is to empty right now to remember or clogd up, get the draino.

I find listing other things for you is easier these days then really talking to you anymore. I forget what I want to say, I sit down with this whole well organized thought out post in my brain somewhere, and it never shows up when I start, it goes walking down the street. I feel like i repeat the samethings over and over, but that is what happens here in Alzheimer's land.  It seems no matter how many times I am told yes we listen that no one really hears us. You suffer and all the books about you are considered to be by experts and people who know about this disease, but folks sorry you do not have a clue to this sise of the fence. I have pretty much lost sight of your side now also. My voice is becoming quiet and running out of its one time fire, i am worn out spent and just plain tired. I sit and wait for the bus to take me home most of the time, these moments of knowing and suddenly not are incredidablly painful and frustrating.I ramble on and on and on and cannot tell you what I really am talking about most of the time.

Well friends take care and be good to yourselves.

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

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Posting On This Blog

Only one rule to those invited to post, must be on dementia any type and you are free to be explicit. If a caregiver your thoughts, what you have learned, what you see, etc. One always has something to say even if it is I cannnot take this crap anymore.

Please check out the In Memory Of page udates. If you want a love one added, use email form on bottom, or email me at jolynn1@cox.net  I need name, birth year, date set free and a picture.

This is our home please join in. If you would like to be able to post here using above guidlines let me know? Remember abuse the priviledge and u will be cut off and so will your post. You know language is not always a criteria here, but honesty is.

I have had the honor of speakinnng to Alan Rodgers, the nut, who is climbing the 7 highest summits on each connntinent for Alzheimer's Awareness. I call him a nut because he climbs these mountains, me I fall down them. He is going to keep us in the looop. He has reached over 20 million people already through the presss coverage and talk shows he has been on.  Alzheimer's took his mother about 1½ yrs. ago, so this is his mission and is takking us with him.  May God go with you Alan.

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

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Because of You!

Yes because of you my every growing famliy out there we have made progress>
As you may or may not know their are something close to approaching 100 million sites on the Internet world wide. When I started the story of mine and asked you to join in this blog was number 57,xxx,xxx million something in standing. Well we are making an impact somehow, because it is as of today 927,085 in standing, Good JOb you guys. Out of the 10's of million in the US, we are now listed as 190,851, I am so humbled by what you have done.

Also thanks to those who have purchased my book.  I truly hope you enjoy and pass on the info to others. Now on the other hand me being a very tiny little bit mercenary - tell your friends to buy it and have them help spread the word as well.

I am going to invite more to post here soon. My haze is starting to get heavy and is keeping me from my job to let all know, how really crappy I feel. but yesterday I was a ball of fire, was so busy donig things, were it came from is beyond me.  Today different story.

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

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The new pic is the whole fam damily. Wishing you all the best for the New Year and thanking you for your continued support and words.

I have having more problems with the old brain, new cells are disappering. I now have to ask if I have eaten because I cannot remember. It is getting harder for me to tell you things and keep it kind of level. My reality is no longer what it was. I have come to a thought that AD is a number of types of dementia which would I think explain why we all progress differently and caring signs of different so called stagess at one time. I find that I sshake more violently now even typing, just time moves.

My brain has just blanked out.

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

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Well Good Morning World! Yes it is me again you lucky people.

I have been puzzled, confused or whatever over something. You caregivers out their and even you suffers can help me with this. Ther are days that I get up and ready to take on the wolrd and my brain in on fire. The all of a sudden i am like, Robby the robot in Forbiden Planet all my circuts start to short out and I am just plain fricken out of it. I do not understand this, most of the time I kind of walk on eggs because I am not sure where I am or how I feel or what is taknig place in my brain. Have any of you seen or experienced this? It is really concerning. Kind of like here today, gone in a minute. Well I am 66 today, who would have thunk it, not me. Still a pain in the ass about things.
Food no longer intersets me either. Eat or don't eat ok by me. The food just does not hold any enticement I think that is the world anylonger. Things I loved to eat just do nothing for me. I have to be reminded now or asked about eating, not part of my list today. Oh well starting to ranble.

Take care of yourselves.

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

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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

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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

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I Can Take Directions???????

I was told do not shoot the refrigerator.  Last hunting trip it was still alive and well. I just look straight in and not at the botoom creatures. They call but I do not listen I just hear them, kind of like your kids do.

Went and saw my shrink today and we changed meds again, or actually I did.  Told him the last stuff he gave me I think it was lats month was at the hazardous waste dump. It ripped my system apart. Back on the old stuff, feeling fine, except have to get the old poop train back on track and the fund dissolver as well.

having fun refinishing a cedar chest, of course my friened Bobby had to sand the thing, otherwise it would have had mountain ranges and gorges in it. He did a beautiful job on the sanding. Yess my staining and varnishing shills are excellent except the stuff makes me loopy, just what I need.

To all of you who visit here and leave your comments, I deeply appreciate them. You who claim to have nothing to say, I say bull, HELLO works well. Nothing important to add, the fact that you stop by, say hello or whatever is important to me and the rest of this world family we have created.So do not be shy.

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

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Me & April

Gramps & April

There you have it, the good looking one is in the blanket, the old fart well we all know who that is. Want to share some of the good with you also.  Number eight and not counting.

God Bless All,
joe

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When Happiness Leaves & Shadows Come

As I walk on this journey of mine, although not alone, it does not seem that way anymore.

The wife and I have tried to have discussion about what is going on with me, but that veil of secrecy that has always been around me seem to be even thicker now. It is becoming more difficult for me to express what is happening and what is inside, because frankly I am not sure what the hell is taking place. I get more lost in my own head then I do elsewhere. Out and about with people is close to being a no no.

Lynn has asked me several times what would make me happy. Each time she has asked I come up with only one answer and that is to die or cross over the line. I no longer like this on the edge shit, it is to confusing, frustrating and just gets in the way of everything. I spend to much time crying inside and I have come to dislike me a great deal. But there really is nothing I can do about that, the disease is doing its job and the meds, even increasing them is not helping. Knew this time would come, just did not want to be here for it. But since I am not the ruler of the universe, be thankful, it is not in my time but his (I wish he would hurry).

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

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I Applaud The Younger

So I am late getting to this, what the hell my fingers needed to be dusted off. What follows are a couple of emails that I want to post, one with full permission, the other not so identity will be with held from that one.

My name is Jordyn and I am twenty years old studying occupational therapy.  My professor had us watch the HBO Living with Alzheimer's documentary for my class, functioning of the older adult.  I just wanted to let you know that I really respect you for opening up your life to the world and writing so freely in your blogs.  How great is it that people of all ages follow your blog!  People from 15 years old to 100 years old are reading your story and I think that is truly amazing.  Hearing you say that your life didn't matter in the great scheme of things broke my heart...I just wanted to let you know that your life does mean something and I hope to follow your blogs from now into the future.  It's a wonderful thing you're doing.  Have a great day!  

Sincerely,

Jordyn

Hi Joe,

I am so excited that you e-mailed me back!  I would be honored if you posted my comment.  I actually just found out today that I was accepted into my Occupational Therapy program at Western Michigan University and I plan to work with older adults in my future career.  I hope you are your family are doing well.  I will keep you in my prayers.  Thank you so much for e-mailing me back.

Sincerely,
Jordyn Bell
Hey Joe! 

I saw you on the Swedish Channel 2 today! I heard
you talking about your illness and I feel for you thou I am only 18
years old. I hope that you can have a wonderful life and be happy all
your waken time with your loved ones. God knows you deserve it!

Greetings from Sweden!
Dear Joe
I continue to be thankful for your help in understanding
what my dad went through as we lost him to AD. Although he no longer
knows me when he sees me, he often talks about his daughter and has
wonderful memories of our time together. Although I miss my dad
terribly it is some comfort that I was able to give him memories of
being loved and appreciated. I pray those memories of time with your
wife and family will remain. And that you will continue to find days
when you are with us all. Take care
These are emails from younger people, those that are coming up the line to care for those that will follow me and are caring. This is what keeps me posting knowing that just maybe, just maybe, we are reaching people and someday maybe just by complete accident one of these and the others in Brazil, Sweden, Chile, Argentina, Australia and other places that have writen by accident just may find out why this disease is. I am not talking a cure or a medicine that MAY SLOW things down, but what really causes this.  Then and only then will the real breakthroughs come and not before. I applaud you young folks, just for your interest not to mention the course you are setting for yourselves. I WELCOME YOU TO MY WORLD.
God Bless & Keep You and This Country of Ours!
joe
PS. To my friend Dr. Joe, I am a dumb SOB, ask those who really know me, God Bless and Keep You my Friend.

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Hope You Enjoy

First let me apologize for what may apppear on the slideshow, it comes directly from Amazon.com, their book section. You can click on any picture and go there and then if you are an amazon customer you can go shop till your heart is content. One warning once you leave amazon, you get me again.

I have added my favorite song to the site which starts attomatically, if you do not want to list to it, just click the button on the audiopal gagett.  But I do hope you enjoy it as I do.

Thanks for being there for me.

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

PS. Hey you contributors how about it, some words please?

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Reading Blogs

I spent sometine today reading some friends blogs and leaving my ever uplifting comments. But you folks that change your links, dam tell me so I can keep my list correct. I list you so others can read as well. Hopefully the remaining 6 people I have invited will have the balls to post and the others will continue.

• I would post daily if I could remember, but I start processing an entry and it starts one way, goes another, then turns left and winds up in the back forty, lost and me with it. Hope the changes are to you liking if not to bad, deal with it.
• Like a legal pleading now.
• Find days are slipping by quicker.
• The brain is getting bluer. Always wanted to be a blue blood, but I have obtained higher standards I am a blue brain, Ok a dumbshit.
• I was at my mens support group the other night, one of the guys there mothers has AD and wwe talk about it and he told me once that you could hardly tell, but his family insisted. He sees her every couple of months or so. Just got back and said he spent 4 hours with her and he was her brother and did not know what town they were in. He was a bit taken back. I asked is she about 4 years or so out from being labeled, he said yes and that she was on Aricipet (wonder drug, not). He asked me why and I told him the truth, she is on schedule. Also the A drug was for well toilet bowl cleaning in my opinion and many others. We hugged I cried for him and prayed for her to be set free soon. These are the real stories of AD not the commercials on TV or the movies, this is what it really does to us. Like a thief in the nite it suddenly takes what it wants when it wants.
• God Bless & Keep You & This Country of Ours! (The Rest of The World Needs Help Also)
• Joe

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The Gift of Alhziemer's!

Yes I know what gift? You need to have the disease to understand. See because of this blasted thing, I learned something today that I did not know, even with it starring me right in the kisser. I was reading over some emails I got because of the HBO Documenttary.

It brought people I knew from over 50 years ago back into my life. Of course they had to tell me how, when, why, etc., before the old noodle could grasp it. This may get long and run in circles, but what the hell, if I can run in them so can you.

You see I wanted most of all to be a good husband, lover, friend, father and someone the Lord would be proud to call his child. Well I feld very badly in my own mind and soul. So as I re read an email from my first girlfriend, the only one nuts enough to date me, Cheryl, I really realized how fortunate I am to have AD. You see, I have invited her to guest blog, but no response, what an asset to this site she would be. Now remember she dated me (poor lady), her mom has AD and Cheryl works for The Alz. Org. in Colorado what a wealth of help.  But more than that, after we broke ups I had 16 years of a real messed up life.  So you understand and I am not sure I do, she was about 5'6"  115#, brown hair, brown eyes and nicely, well very pleasant to look at, not what a memory, she sent me a picture from that time, and a Leo. I always felt comfortable with her, but life goes on and people (me) screw up alot.  What does that matter to you or me, well I just described my wife of over 30 years. Now she is stuck with an AD patient and she is a Leo to, and I have asked her to post, but you know these lions the roar, but are really just pussy cats. Because of this and the special I have found that my family was my career and Mr. How Smart Am I, was not even aware of it. Cheryl and the rest of you have shown me that and I am well pleased inside.

Still confused and not sure what I will do from moment to moment but I am having quiet an adventure, and sometimes it is pretty rotten. Just spent a week isolated to my self and not really talking to anyone, without being short and less than Kind. I find that, at least i do, just wip back without concern of what I am saying. From those I tak with that have this disease seem to do that alot to. Well enough of me for now. Be good and take care of yourselves.

God Bless You & Keep You & This Country of Ours! (The World Needs Him To)
joe

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When Will They Get IT Right?

The so caled pros that know everyghing, you know the PHDs, the ones with the Paper Hanging Degrees, they still know Jack Squat about this disease. Ant those of you out there withit, that write your wonderful books and taught your abilities to do so, you sure are a big help. Dr. Joe (not me) runs a blog that makes my fires burn, because he knows his mom died from it and still hears all the bs of 20 years ago today, with new hair brained ideas. You want the answers here we are standing ready to show you the way, but you alas are to stupid to realize that just maybe we hold the key and the lock.

Yes I am a tadd upset, because each day we help keep them boobs healthy and 15000 less a year die (which is good), more of us are let to go by the wayside. You see my world is getting worse each day, the one in my head, the one outside of me has been really fucked for just over a year now and going to get worse. Maybe it isn't so bad that I suffer from this Disease, soon I won't give a shit about any of you, because I will not know who the hell you are.

Well it is Turkey Month, this year I give it to the Medical Profession and The Do Nothing Politicians. Uncooked, ungutted, feathers and all, you won't be able to tell the difference any how.

To those I still love and care about.

God Bless You & This Country of Ours.
Joe

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Anger Sits With Me This Day.

Since HBO has ran and is running the documentery on AD, I have had a slew of emails from this country, Chilie, Brazil, Canada, Australia, Israel, just all over. What has gotten to me is the YOUNG PEOPLE, who have suffered the loss or are suffering a parent and a grandparent and because of this special they want to do something to help. Wow I say, and the adults in this country and around the World have sat on their asses all this time, yes even the tauted medical profession. I hear we have come along way since 1906 or 1908 whenever AD was coined. How far have we come is it in real knowledge, help, knowing the CAUSE, curing or is it just plain ass TIME? I read the studies and that contradict each other, the so called quak cures and how to stop and cure it. But yet I have not read on single word mentioning a persons name that has been cured.....
Oh let us march for a cure, bull shit. Let us first march to find the cause, no cause no cure, that is how it works. Yes these folks will do good in raising funds and maybe some awareness to help in the research on the disease. But since it does not affect your boobs, balls, prostate, colon or lungs, I guess it just does not warrant the NFL or other major playes to do anything. You know I have seen the cancer marches, heart disease, etc. and people where T-Shirts, "I AM A SURVIOR OF CANCER". Watch the walks for AD and find me a picture of just one person that has a shirt that says, 'I AM A SURVIVOR OF ALHZIEMERS OR DEMENTIA"! find it, it will not exist, we all die period. I know Iwill get hate mail and the such, but bring it on, truth stands on my side. Ask the literally 10's of millions around this World that have been affected by it having or knowing one. I do not take the other killers, cancer, heart disease, diabetes, obesity, aids, etc. lightly but boy are there a lot of people (baby boomers) in for the ride of their life, with no real help.

Straight talk from one who suffers and is declining, I hope that I enrage you enough to do something and get rid of socialized medicine it is a failure and by God, do not just take your Drs. word for what is wrong, make hin/her explain why and in detail. It is your LIFE and your BODY that is at stake.

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

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Who Am I?

For some reason many of you have called me hero, courgeous, generous spirt, wonderful person and all type of kind things. Truly I am none of these, just another one among millions with this fricken disease. No cure, no real meds, no real scientific finds, just one end. At firstm many thought I was bitter orver it, I never have been. Pissed at a medical profession that would not get its head out of its ass and listen yes. You see it is just my turn, I was called and well I answered, oh well. Often wanted to write my life story, maybe that is teh real reason behind this blog, I do not know. Now I have difficulty putting it into a time frame since time does not exist for me the same as it does for you. I was going to callthe booke THROUGH THE LAUGHTER, HE HEARD MY TEARS! So much for that.

If you want to know who and what I really am, there is a post 08/0/2008 called A Warrior's Lament, an attempt at a poem by me saying where I have been and am and a post 09/29/2007 Farwell To My Old Friend Pain, to post is self explaining I thing.

Well Lakes to HBO this blog has been buzing. They are the Heroes for doing the series that needed to be done. Five hours cannot cover it all, but they did a one heck of a knock up job. Shit the brought back long lost friends to me because of it, I sure benefited by it. Well tooo much rambling.

God Bless You & This Country of Ours!
joe

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Mark Your Calendars - 5/10/2009

On this date HBO will start the firsst in a 4 part series on Alzhiemers. As you know I prefer to call it dementia. As the council on aging testified in March to Congress, THEY DO NOT KNOW WHAT EVEN CAUSES IT. Yet they feel thaat with the right structure and funds there could be the possibility of delaying its onset. It is finnally being recognized and called a disease and not just of the aged. Maria Schiver gave a moving talk, but the gentleman from Florida much more touch me with the story of his wife diagnosed at 55, about 65 now I am guessing no longer remembers him and the pain of it. He also talked about those who are not wealthy like Maria, face challenges of care that she can afford. I am not taking things from her, the devestation of her father is real and painful for the family. But I still do not believe the caregivers truly understand the pain and frustration and anger of it in this World. You go along ok for awhile. Then you fall down a part of the stairs. You go to get back up the stairs, but no way, they are gone lost forever and so has part of yourlife and who you are disappeared. Epedemic they call it, try PANDEMIC, with more than 10 million in this country alone suffering. These people did state a real truth, when you have seen one case of AD, you have seen just one case. We all progress differently. And as they said 'YOU WILL NOT SEE ANY SURVIVORS OF AD WALKING AROUND". THERE ARE NONE!!!!!!! Welcom eo My World

I have got nasty lately on my blog and truly do not care, it is part of wo and what I amm becoming. BUT I AM PROUD TO SAY THAT I AM PART OF THE DOCUMENTARY THAT WILL BE SHOWN ON HBO IN MAY. I thank them for having the balls to truly attack this head on. KUDOS HBO.

If science has or ever gets the courage to take live brain cels so they can truly start to find out how this plague works, I AM READY AND WILLING TO LET THEM GO AT MY BRAIN, it is becoming of smaller and smaller value to me.

God Bless You & This Country of Ours!
joe

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