Come & Join Us!!!!

Thank you for sending a message to the President. There is true strength in numbers and we need all the help we can get. Will you take a few moments to send out the message below? You can simply copy and paste it into a new email.

Again, thank you for your support.

Sincerely,
Brendan Burns
Associate Director, Advocacy
Alzheimer's Association


Dear Friend,
As you probably know, I'm an advocate in the fight against Alzheimer's disease. Right now there is a bill that has passed Congress that has the potential to change the course of Alzheimer's Disease.

The National Alzheimer's Project Act would launch a coordinated campaign within the federal government to overcome Alzheimer's disease. It would create a national strategic plan for America's 6th leading cause of death with clear objectives, accountability, and timelines.

Please send a message to President Obama asking him to sign NAPA. or go to www.alz.kintera.org/President

Thank you for your support,
joseph

Your message was sent to:

President Barack Obama

As you know, National Alzheimer's Project Act (S.3036) was recently passed by both the Senate and House of Representatives. As an Alzheimer's Association advocate, I respectfully ask that you sign the National Alzheimer's Project Act into law without delay.


The National Alzheimer's Project Act would launch a coordinated campaign within the federal government to overcome Alzheimer's disease. It would create a national strategic plan for America's 6th leading cause of death with clear objectives, accountability, and timelines. NAPA establishes an inter-agency Advisory Council that will coordinate and evaluate all federal efforts on Alzheimer research, care, institutional services, and home- and community-based programs. The national plan with outcomes, recommendations, and priority actions, must be updated and reported to Congress annually.

On behalf of the 5.3 million Americans currently living with Alzheimer's and their more than 11 million caregivers, thank you for your commitment to fighting Alzheimer's disease. I look forward to hearing from you regarding the enactment of the National Alzheimer's Project Act.

Sincerely,
Joseph Potocny
5435 Lariat Way
Oceanside, CA 92057-5517

PS> We look forward to your help.
God Bless & Keep You & This Country of Ours!!!!!
joe

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Once There Were Seven - Now??????

Many of you may remember the HBO special, specifically "Memory The Loss Tapes".  Both my wife and I have tried to find out how each of the perssons in the film were doing. However calling and emailing HBO brought not even a response of any kind jus SILENCE. I know my wife will hit me upside the head for this, but I guess they got their awards and that is that. I met these folks and they were oh so nice and greatfull for each of us letting them into our lives. It is not the actual people that filmed the part I was in that I am miffed at (being politically correct here), but those at the top who do not seem to really care beyond their fuckin awards, sorry wife but I had to let it out.


The film had the following folks in it:  Bessie Knapmiller, Fannie Davis, Yolanda Santomartino, Josephine Mickow, Cliff Hoffman, Woody Giest and of course me.


Theough research my wife was able to find out most of the information we wanted to know. Remember we all had been diagnosed for about the same number of years:
Bessie Knapmiller  set free 2/2010 she won!
Fannie Davis: unable to find out
Yolanda Santomartino: unable to find out, but her age and condition tell me she may not be with us anymore.
Josephine Mickow: set free 10/2009 she won!
Cliff Hoffman: set free April or May of 2008 before filming complete, he won!
Woody Giest: set free 3/2010 (believe this is correct) he won!
Joseph Potocny (ME): well your still stuck with me.


I have mxied emotions about my comrades, as I do not like to see anyone die, I am also happy for thsoe who won and beat this bastardly disease. I am also jealous that I am not with them. As for Fannie and Yolanda, I pray the Lord has you in his arms and comforting you.


I ask the families of those past on their permission to post a picture on my memory page of their loved ones and that they send me one:  jolynn1@cox.net


This is for me a sad day of posting. Take care of yourselves.


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

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Here is hoping that you all had a wonderful day yesterday and stayed safe. As for me I helped to expand my stature in life, I ate.

I had an interview with a journalist sometime this week that is doing a two part piece in the local paper here on me. I guess she was promted by my post of Who Speaks For Us. We discussed my anger in the posting and she cam to understand that I was not against boobs, but the fact that there really is very little media about us. We talked about how we are throw aways. I also expressed my disappointment in the Alz Org for not being more media concious. Walks are great, working quietly with lawmakers to get things moving is nice, but without hard media coverage does not help that much. NOTICE we now have a pill that will help about 70% of those who take it not to get AIDS, is that not nice for those that want same sex and needle sharing.  From about 1983 or so till now we are stopping these folks from dieing (which is great), only 25+ years to help them, of course that was media push and political movement.

But here I stand with over 5.3 million (very low estimate) with AD, and we are THE WALKING DEAD!!!! like it or not that is the plain raw simple truth, known since 1906 well what do we have, meds that may slow things for a short time then down the hill you go. Yes we with dementia are B movie actors, Zombies of the World, Night of the Walking Dead, etc. Yes I am pissed. I will stay that way and continue with your help to get us a VOICE that will not be Silenced.

Each day that butcher in my brain takes more of me, not thin tiny slices anymore but it has widened the blade and the slices arre gettting thicker. I st5umble more, lost in conversations most of the time, sit and my brain goes off somewher and leaves the body here just fixed. I believe that I am starting to have ciesures not the roll on the ground type but where my mind just flakes. It is getting harder to post, the things come to my head, but get lost before I can write them and I sit here trying to figure out why I am at the computer and just get up and walk away.Everyday living is becoming a task, simple crap just is major, the fun is leaving. I now no the rages of this disease and the loss of who people really are.
My once strong strength to concentrate so I could talk is weaking quickly and I can be pulled off subject in a second and not be able to return. Right now, I am alone and the house is quiet, so I can talk to all of you, but it has taken since about 6 this morning to put this together. This blog has become me and I guess my crusade to awaken people that we do exist and that they very well may join us shortlly unless there is such an out cry that people move, THIS IS NOT AN OLD PEOPLES DISEASE, there are those that were born the same year as me that are a cpl of years dead now from AD. I am onl 66 now, stat wise about 2-4 yeras before I get the hell out of here.

Take care of yourselves and be good to each other.

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

PS that goes for all those on this planet.

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Locked In Time.

While this is still in my brain cell, the wife and I were talking last night, we are strange we do that. We were discusing yesterday and tomorrow.  To me there is no longer a tomorrow, it does not exsit and she asked me if I wanted it to come and I said not really or something like that. It just seems that tomorrow does not matter anylogner to me. Yesterday, well that is not 24 hours ago to me, but it seems like centuries and having no meaning. Lynn says I am in a time warp, who knows. All I know or thik I know is that time for me is right now, not 10 minutes from now or past just right now. It is a strange feeling, I guess my ½ brain cell is on overload.

I got a comment from a young lady in Romania and she was worried about her English. Well is was perfect and really young one, this is not the place to worry about it. As you read you will see what I mean. I welcome you and the other new folks I have heard from to this World of Mine. You never know waht will come out of my brain, and neither do I.

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

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Par Boiled Fanny

Yes yours truly master of home repairs and as dense as a tree was at it again today. One needs to know that me and ladders do not belong in the same universe, I get on one and by the time I reach the second step on it I am 30 pounds lighter. Today we started on clean the outside of the house, redoing the pation and th driveway. Well do to my immense brain power I got on the roof to wash down the roof and upstairs portion of the house.  Well sitting on the roof was a bit on the hot side. Did you know that when you spray down a roof that the sun has been beating down on the water turns to steam, well I do now. As this small river came rushing down the roof towards my secure spot, it reached my butt, yess my backside, and it cooked it. I felt like I was sitting ing boiling water, guess what DAH i was. I am fighting this disease the best I can, but the longer we go down the road, the more I find out what I do not know that I thought I knew, before I found out that I did not have the first idea about it.

Lately when I get up I am not able to finish crossing that bridge from sleep to being fully awake. I was talking with my ologist this week and he asked if I felt like I was is a fog.  Well the answer is yes, the above is proof of that.Things are just not clear to me any more and I stop more in the middle of things then I did before and wind up doing something else. Each day I decide to write on here and say I should write things down before I post so I remeber what it is that I want to say. GREAT IDEA, problem is I sit down to do it and forget what it was I was going to do, welcome to dreamland.

Well I need to stand right now so you all be good to yourselves and THANK You for helping me win the new award posted on our blog. This is your victory as well.

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

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A Prior Post if You Will. With Added Comment.

A Warrior's Lament:    (by j.v. potocny)

                                                                   

I kneel before thee

Upon bended knee

My battle axe rusts upon a tree

The Steed that served me well

Now runs free and frail

He served us both with grace and might

Let him rest well each night

There is no deadly mace

That you can see before my face

Gone is my shield which I cannot hold

All that is before you is my sword and face

I have stood tall in all battles

With You I have won and battles song sung

Many with scars some with none

Since a child I have fought the fight

Now I wish for it to end this night

My strength is dried up and gone

No longer does exist that fierce warrior in me

I long to face only Thee

This battle I am in is lost and so am I

So before You I am on bended knee

Prostrate would I lay

But this body is to broken and brittle this day

So I lay before you all I have left

Worn, beaten, yearning, to you I give my soul

No longer in the dust of battle let me roam

I await You and Your Hand to take me in your time

I pray Thee take ME HOME

In Your Name Amen.

This more reflects my wishs of today and my feelings. I no longer like it here. I no longer communicate with those around me well. Most of the time I am in my own little world and do not want to be bothered by anyone. My wife has noticed more and more that I am not with those around me. This is not a friendly world it rather sucks. Things I once enjoyed are a chore, getting things done takes it seems like years to me. It feels at times like my brain is being crushed or squeezed down. It is not a headache but a sensation of being pushed out and away.

God Bless & Keep You & This Country of Ours!

Joe

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Happy Father's Day

To all you dads, grandpa's and uncles a happy fathers day.  Oh by the way one to you rascals that may not be sure if you are. To our father's in harms way our troops a very special day to you my friends.

This hopefully will be the first of two posts today. My eldest has gone to the hospital already this am to have what should turn out to be our eight grandchild.  She did it once on mother's day so why not. BBQs were planned for both these occassions.

A special prayer for those in the gulf, May God Grant You Peace and Show you the Way. Amen.

More later.

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

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My Brain on The Move.

I do not know what this one will be titled, because I am not sure what is really inside of me today.
I finished after quiet sometim a book called "When Can I Go Home". I was asked for what reason I am not sure to review it. The author can post my review if he wishes once I write it.

I will tell you that I think, once and awhile, that most people will miss the real hidden story of the book. Caregivers will find solice from it I am sure. But what struck me is that we that live in this world of AD are still put aside as the wicked stepchild. Not that, that was necessarily done here, but seems to me it was without knowing.

See I feel that way because folks say no your ok, and I am not, I never know where or who I am going to be. I started this blog in 2006 and I am not sure why anymore. I like hearing from folks but I really wish those who read this that live in this World of ever growing darkness and confusion would write me. Feeling alone in this journey is no fun and I know I am not alone but feel that way often. It is difficut writing these things trying to keep them readable.

It upsets me, again my problem, but people write you write back and never hear from them again. I am sure that I have forgotten to answer many an email. I can only same I am sorry, here to all that I have missed.

I wonder if you know that AD is the #7 killer. I think that if they put the real reason people die, like their liver stopped because their brain forgot to tell it to work and things like that happen frequently with this disease that it would very likely be #1.

My brain is just bouncing around right now so until later, be good to yourselves.

God Bless & Keep You & This Country of Ours!

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OK Let's See If You Use This.

After slaving for 1000's of hours and bangnig my head on the wall to clear my ½ brain cell, and much swet, tears and blood and of course countlsse 10000000's of dollars, sound like I am going to make you rich scheme? WRONG!!!!!!!! This is more torturing than that. There is a small blue statement with a red under line on the upper right hand side of the blog it says live chat. Yes click on it and if my beast of humanity is on it will ring and we can chat to one another if you want. If not fine. I will take my milk and oreo's ago elsewhere.

God Bless,
Joe

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Who & What Am I Becoming?

There once was a tmie I could answer that but not anylonger. I have for the last several months porued myself into trying to start some things for the family to help make their financial future better. However, I remember the comment I made in the HBO thing, Once I was a genius, now I'm not. How true, it seems that once what I touched I mad work and well, now it goes to hell in a hand basket. My thoughts seem to be of the same charge and push each other out of the way, leaving avoid for confusion. That is the disease at work and having a good time of it. I find myself much more pissy and angry now, but I try to keeep the old trap shut and carry it alone. I am beginning to understand why we in this World of Ours, just sit alot and say nothing or just wander. We no longer have a grasp on things, what is real is it, I don't know any longer. I do not want to say things to family and friends because I don't want the constant hovering or them walikng on eggs. Frankly i do not know what I want, who I really am, where I have been or am going. Things from the past seem to be from yesterday and yesetrday seems to be the past. I feel truly helpless for the first time in my life. Where do we go from here? Down the tunnel.

God Bless,
Joe

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I Am Back, Ready or Not.

You know, no you don't, but this damn disease is a real bitch at times. I find myself having to seperate and kind of hide to keep from lashing out. We have had our one daughter and grand kids and son in law with us almost 3 weeks I think, am not handlin this well. I love them, but.

My wife and I are starting to lock horns more, she thought my last post was rather mean and spiteful, I think that is how she put it. My reply was, well you guessed it eat shit and bark at the moon. I write what I feel and how I see it. It may be clouded it maybe one sided, but it is all I know. I make no excuses for what and how I put it. Those that live in this World with me, they know, they understand and hopefully I say what they cannot at least for now, while I am able to . Yes I am angry as I write this today, better to put it here than where else I might.

Ino We that live with AD, really find ourselves fucked up alot of the time, understanding the real confusion and loss we feel is difficult I know for those on the outside looking in. See we can not get back to the outside to look in, we are stuck here and sinking deeper. Try to imagine the darkness starting to encase you slowly and you cannot stop it and you want out and NO not for you. What is that old saying when Casey at The Bat struck out, there is no joy in mudville.

Well enough from me. You all have a great day and wonderful life.
God know the idiots in Washington won't fix it, but only screw us more.
joe

God Bless You & This Country of Ours!

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We Will Always Remember!!!!!!!!

Lest we forget why we are FREE!!!!! To OUR TROOPS and FALLEN COMRADES, I Salute You.

God Bless You All & God Bless Our Country!!!
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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Thank You All

I hav been deeply moved an honored by the number of people that have wirttin me and sent me emails over the last few days. The words used pay me an honor that I do not deserve. I am but one of many on the journey, I jus am able still to let you know hte rotten side of it here. In watching the HBO special, the real heros were the kids, I cried over their pain and frustration and the absolute resolve they had to love their grandparents and want ing to understand. See you have the tuff part, we just keep forgetting and reach a point that nothing matters as it once did. Someday, they may really know what causes this and may even find a way to stop it, reverse it I do not think so. But wha the hell we are talking about me thinking. I have one brain cell and more than one thought causes a traffic jam and I get totally messed up and confused. It is harder for me to talk these days, words come out kind of liek my typeing. If I get to it today or the nxet couple of days I will be adding some links to other blogs for you to read.

Till next we meet.

God Bless You and This Country of Ours!
joe

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December Already!!!!

Yes it is that time of year again. For me Thanksgiving seems years ago. Time no longer has a start and finish for me. Well it will be here soon, probably sooner than I think and be gone before I know it was here. This year has been fillled with manny things for me. Or I think it was, I am no longger sure of it. But I still awake each day and breathe, I might looose most of the day but I am still there somewhere for it. Funny somedays I feel in total control and then for days I have no idea what is going on. I try to get to this each day, but at last it does not work that way. Early or not at all for the most part. Catch Ya All Later.

God Bless You & This Country of Ours!
Joe

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As My World Turns!

You know I have to get going early and do what chores I have, because about this time my world starts to slow down and crash. This won't be long, but I do apprecaite hereing from you folks, the good, the bad, the ugly, etc. It makes me feel like I am not preaching to the trees or the walls. Well my you all have a good one.

God Bless You and This Country of Ours!
Joe

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This Belongs On My Answering Machine!

Thanks my friend Dick.

Hello and thank you for calling The State Mental Hospital.
>
> Please select from the following options menu:
>
> If you are obsessive-compulsive, press 1 repeatedly.
>
> If you are co-dependent, please ask someone to press 2 for
> you.
>
> If you have multiple personalities, press 3, 4, 5 and 6.
>
> If you are paranoid, we know who you are and what you want,
> stay on the line so we can trace your call.
>
> If you are delusional, press 7 and
> your call will be forwarded to the Mother Ship.
>
> If you are schizophrenic, listen carefully
> and a little voice will tell you which number to press.
>
> If you are manic-depressive, hang up.
> It doesn't matter which number you press,
> nothing will make you happy anyway.
>
> If you are dyslexic, press 9-6-9-6.
>
> If you are bipolar, please leave a message after the beep
> or before the beep or after the beep.
> But Please wait for the beep.
>
> If you have short-term memory loss, press 9.
> If you have short-term memory loss, press 9.
> If you have short-term memory loss, press 9.
>
> If you have low self-esteem, please hang up.
> Our operators are too busy to talk with you.

>
> If you are menopausal, put the gun down,
> hang up, turn on the fan, lie down and cry.
> You won't be crazy forever.
>
> If you are blonde, don't press any buttons.
> You'll just mess it up.
>
> This coming week is
> National Mental Health Careweek.
> You can do your part by remembering
> to contact at least
> one unstable per son to show you care.
>
> (Well, my job is done . Your turn!!)

God Bless You and This Country of Ours!
Joe

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Why I Do This Blog!

Message = Joe,
First I would like to say that I am sorry for the crappy deck of carded dealt to you. It seems as if we are looking forward to working ourselves to death to enjoy our older years. And then this. It is not very fair at all.

I came across your blog while researching Dementia. My mother-in-law was diagnosed 3 years ago at the age of 51. She progressed quickly and has now lost the ability to talk and lost her ability to control her bowel movements. She is trapped in a world all alone.
Do you have any advice on ways to comfort her? I would like for her to know that no matter if she knows us or not that we still love and care about her.

Thank you for your time and I hope for the best for you.
(we will call her)
Pam

Subject: Your Mom

Dear Pamela,

Sorry it has taken me so long to get back to you. I keep trying and keep forgetting or start and go off and start something else. The nature of this Disease. Being that your mother and I live in the same World which is different from yours. I can just imagine your feelings as a caregiver, that is why I started my Blog, so the outside world could get at least to know how it is for one person and help some to understand those they are caring for.

The best you can do for your mom is what you are doing. Being there for her, talking to her, telling you love her, sitting with her and not speaking, hold her hand, smile at her, keep your tears to yourself, she has too many in her heart to bear yours. Trust me she know deep inside you are there and helping. This disease just stops us from responding well and takes our lives away from us. I know my family gets nuts over me, because I cannot always hold a conversation with them or follow theirs and I forget who the hell they are. I am pretty outspoken and direct if you really read my blog. I am offensive at times and I do not care, because I am discussing My World the hell of it. Be glad on this email I used spell checker, because generally do not I want folks to know how this crap really is. Any further emails I will not use it, so I hope you are good a picking something apart to understand it.

Being there for your Mom is the single best thing you can do for her. I have told my family and it is in my blog, when I get to close to crossing the line of this disease as your mom has, I will say good bye to all and be gone. I will not put myself or family or friends through the last stages. See I worked for a number of nursing homes that had those that could manage on their own and those that needed assisted living care and those who needed accute care, as I was developing this disease. I still remember going through the lunch room at one of the homes (I took care of three homes computer systems) and watched the attended lift this ladies face out of her food and clean her, never I said at that point would I allow my life to become such a burden and worthless being. My heart broke that day and I finally noticed the real death of these folks that were around me. They were gone and someone else was living in them and I cried and said never would I put anyone through that. But remember that is me and my feelings.

I may post this reply on my blog, if you do not mind. I sometimes use the email people send me and my answers back to them.

God Bless and Hold You Tight in His Arms!
Joe

Joe,

Thank you for your response. You are more than welcome to post this on your blog. Reading through your eyes has given me perspective. I hope a lot of other people, especially caregivers, can see this too. Maybe it will take some of the frustration away. Maybe it will help people be a little more compassionate and forgiving and a little less annoyed and frustrated.
Thank you for your insight.

Pamela

God Bless You and God Bless This Country of Ours!

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A WARRIOR'S LAMENT (By: j.v.potocny)

I kneel before thee
Upon bended knee
My battle axe rusts upon a tree
The Steed that served me well
Now runs free and frail
He served us both with grace and might
Let him rest well each night
There is no deadly mace
That you can see before my face
Gone is my shield which I cannot hold
All that is before you is my sword and face
I have stood tall in all battles
With You I have won and battles song sung
Many with scars some with none
Since a child I have fought the fight
Now I wish for it to end this night
My strength is dried up and gone
No longer does exist that fierce warrior in me
I long to face only Thee
This battle I am in is lost and so am I
So before You I am on bended knee
Prostrate would I lay
But this body is to broken and brittle this day
So I lay before you all I have left
Worn, beaten, yearning, to you I give my soul
No longer in the dust of battle let me roam
I await You and Your Hand to take me in your time
I pray Thee take ME HOME
In Your Name Amen.

Joe

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