For Those Who Can Still Walk!!!!!

Yes this disease even takes that away from you. I know I have griped abouut the brain going away, but it seems my feet and legs are developing a mind of their own now. Several times I have falleen and trip and got hurt, but never thought of how AD is affecting me in that way.  Well the other day I had some sense knoccked into me. I was putting away the garbage cans, tuff duty right? We let me tell you it can be, putting the last can away I was practicing walking backwards, front ways not that good, try something new: Well I check where I was going turneed back around, steppped out of my sliper, apparently steped on my foot, you got it I went on a trip. My rather robust bottom slammed on the walk way, my back hit the pavers and this empty head of mine proceeded to put a rather nice looking dent in the one metal storage shed we have.  I have to admit the shed looks good it now has character. Me I have character to, back hurts like hell, my head hurts, the crack in my bottom has widened and I have been advised by my keepers, that maybe I should not do that anymore. You loose one freedom after another with this crap.

Until we meet again, take care of yourselves. I hold walking classes every Tuesday at 1pm PST.

God Bless & Keep You & This Country of Ours!!!
joe (the marathon walker)

Read More

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

Read More

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

Read More

My Husband

Well now that I have been on the guilt trip for not blogging on his site I will explain why. Even tho I am a Leo I don't do a lot of roaring. Only when it counts like protecting my family or friends. For the most part I am a real pussycat. So you wonder how in the world I managed to survive 30 years with this man. So am I. He is a tyrant when it comes to having things his way. Always has been and probably will be till the end. But he is also a very loyal and loving friend. He is my best friend. He would fight for me. Since we have started this trip with his medical problems it has not been easy. Lately he is stubborn, mean, forgetful and just not with the rest of us. I have asked him questions and then he walks away without answering them. Or he will say something about me nagging him and getting rid of wives that nag him. Nagging consists of asking him what he wants to do on any given day.
So those of you out there taking care of a spouse or loved one just remember that we do it for love because who else is going to do it. Me, I tell him I am in it for the money now. So he should probably go back to work and earn some.
It is not easy and it will only get harder. But we are in it for the long haul. For those who can't stand up to the pressure do not feel bad. This world is not for everybody and the quality of care is more important than who gives it.
Take care
Lynn

I

Read More

Frustration Reigns!

This week has been a difficult week for me. Just toooooo much family and kids. Good thing I have additional meds to take or I woud not have kept things to gether. I love my family, but I am becoming less tolerant, more mouthy, angry and pissed mor easily. I have a grate deal of trouble controlling my mouth and emotions lately.

I want to thank the two who have taken the opportunity to guest blog here. I have invited several that I thought could add to the thought processes found here on both sides of the fence as it awere.  But it seems that some old "friends" choose not to. Everyone has something to offer. Even if it does not agree with what is felt here. That is what this blog is about. Expressing feelings about having dementia and those careing for us. Neither side is neat and tydie, they both suck. I miss the days when I could think more clearly and express myself and do it (ego here) with little room for argument. Now I am lucky to blog at all. But no this you are all welcome even those who feel I am just an angry old fart, angry yess, old yess and I guess a fart as well.

I try to not talk about everyday things, but how this disease affects me overall. Yess some days I am on top of it others I cann't even find the stairs. I do find the walls I walk into them and excuse myself. Yes I have taken additional meds today, and am still shaking inside and my temper is border line, but the impression of my teeth in my tongue helps me keep quiet. I will be posting some emails that I have been give permis to, I ask because not everyone leaves comments.

Dr. Joe I guess the 10.00 bucks I paid you for your post paid off. Doc I really cannot walk on water, trust me, I can barely walk on the ground without it moving. But I thank you, my friend.

Well you all take care and be good to each other.

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

Read More

Hello My Friends, Hello!

We are back from Petaluma. Daughter and new grandson doing well. She is home, Lucas still in hospital hopefully home this Saturday.

We finally got a room on base in guest quarters. Gramps here could not handle staying with the kids, even though we had our oun room. I needed a hide out period. Had to increase meds while there just to try and cope. Am Losing control of my emotions and ability to keep calm and mouth shut.

Came home sick again. But we have figured out the problem, their is mold and mildew all over tha t base and I am highly alergic to mold. So from now on will have to build up with antihistamines before we go.

Now to start back on the pond. God this disease just makes me not want to do things , forget what the hell I am doing and really now mly emotions and starting to not care about others, they are starting not to exist for me. I have a very hard time writing on this thing now. Mind wanders toooo much. But still can get out something. Body is starting to rule itself and not tell me. Eating I forget to eat or tha t I ate real pain.

Until we meet again.

God Bless You & This Country of Ours!
joe

Read More

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

Read More

To All True American's - Happy July 4th.

TO ALL WHO HAVE FOUGHT AND DIED FOR OUR FREEDOM. THIS IS OUR TRIBUTE TO YOU! THEY WILL CARRY ON FOR YOU AND CONTINUE THE FIGHT REGARDLESS OF THOSE IN WASHINGTON THAT WANT TO SELL US TO ILLEGALS AND CHINA.

Our Country is based on the Christian and Judeo principals, no matter what the "I'm Just A Boy From Kenya" has to say. I am not normally this political on my site, but this man and the present congress are not worthy of the support of REAL AMERICANS.

So let me have it back. Just remember I will forget it and go on with what is left of my life and brain, you will be living in yours. Little AD sarcasim.

I hope YOU ALL have a geart 4th of July and remember why we have our freedoms that others even here what to take away from us.

God Bless You and This Country of Ours!
Joe

Read More

No Wonder My BackYard is a Challenge..

I was sittting here reading my last entry, I knew something was wrong with it, but I had to study my own hands to figrue it out. It should have read starting on the left. See I do not know my right from my left anymore. Might be one reason I don't drive anymore and I turn into the wall when walking. I think I have it right now, if not you figure it out I am done.

You know this thing is gettting the better of me, we knew it would happen. I am having greater difficulty in remebering what day it is and am getting lost in conversations more often now. I am trying to follow the note that hangs on my computer desk that just says BLOG. I feel that I will soon not be doing this, having too much trouble with my thoughts, fingers and the friken keybaord.
So much for my crab, you all have a great ad wonderful life.

God Bless You & This Country of Ours!
Joe

Read More

I Do Not Go Away - Google.

I sure many thougt I would not follow up on my distain with Google, but I have a very angry side to me, especially when being called a thief. Years ago maybe, now no way. So here is to google, using spell & grammar checker so they could understand. Also, no answer from them yet. No balls I guess.



April 28, 2009

Mr. Eric Schmidt
Chairman of the Board & Chief Executive Officer
Google
1600 Amphitheatre Pkwy.
Mountain View, CA 94043

Dear Mr. Schmidt:

I am sure that you maybe wondering why there is a check for $0.81 attached to this letter.

Well there is a good reason for that, I do not appreciate being basically called a thief and a purveyor of illegal intent of taking funds from anyone. This blood money is repayment for what I was paid by Google Ad sense, because someone unknown to me was clicking on the ads on my blog. I presume from the insulting email I received from your outfit, they were not justified. I appealed, since I did not even know that I was to get paid, and basically as far as I am concerned was called a liar and complicter by your staff.

You see I suffer from Alzheimer’s and Frontal Temporal Lobe Dementia. I have a blog located at http://living-with-alzheimers.blogspot.com/. On this site I tell of how the disease affects me and how I cope with it. I started it to help caregivers, physicians and those whose loved ones suffer from the disease, what it is like in Our World. Maybe in a small way giving them some comfort as to how it is not their fault and that they could do very little.

I thought Adsense would be good, because it listed sites and places for people to go on my blog as well as in the posting. The ads were pertinent to the blog and entries. This was my whole thrust. But YOUR PEOPLE, I guess felt I was just trying to steal from you. So hence I return the $0.81 to you, I would not want your firm to suffer any financial hardship over this, or your dog not be able to eat because of it.

As a point of interest, The Wall Street Journal thought enough of me and my integrity to feature my blog in the paper. HBO Media also has honored me by including me in their The Alzheimer’s Project, which airs in May 2009. By the way you can find the information on Google.

I remain,
Joseph Potocny

Read More

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

Read More

Thank God For Friends - They Make Me Laugh!

This came from a frien, who rote it I do not know, but you will find me in this.


I was gonna write something here _ _ _ _ _ _ _ _ _ _ _ _ _




Forgetter Be Forgotten

My forgetter's getting better,
But my rememberer is broke
To you that may seem funny
But, to me, that is no joke

For when I'm 'here' I'm wondering
If I really should be 'there'
And, when I try to think it through,
I haven't got a prayer!

Oft times I walk into a room,
Say 'what am I here for?'
I wrack my brain, but all in vain!
A zero, is my score.

At times I put something away
Where it is safe, but, Gee!
The person it is safest from
Is, generally, me!

When shopping I may see someone,
Say 'Hi' and have a chat,
Then, when the person walks away
I ask myself, 'who the heck was that?'

Yes, my forgetter's getting better
While my rememberer is broke,
And it's driving me plumb crazy
And that isn't any joke.

CAN YOU RELATE???
I DON'T REMEMBER WHO I SENT THIS TO !
LIVE, LOVE & LAUGH A LOT

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

Read More

No Where To Go--------

The picture is of me and my elsdet granddaughter. She is 6 today, Ms. Emma Nichole.

I have ben trying to get stuf done on my computer today, but I am just lost as to what I am trying to do. Postit notes allover the place, printed emails to reed and get throug. Just is not working. I haven sitting here looking at my note that saays blog and trying to get to this. Sometimes I just feel completly lost and have no idea where to go to do things. I feel like the odl brain is really slowing down and it wants to go somewhere and not with me. I just dont want to. Whateles can I say.

God Bless You and This Country of Ours!
joe

Read More

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

Read More

Welcome to 2009!

Well the New Year of 2009 is well upon us. New challenges, changes and I am afraid much of the same old bullshit. I hope your year is good to you, I know that mine will only get tougher, but that is alright. Just think if I didn't have this wonderful sickness, YOU MIGHT. So I am doing you a favor. May you find comfort in you life and giving to others.
My world and how I feel in it much of the time.

God Bless You & This Country of Ours!
Joe

Read More

This Pretty Well Sums It Up!

The folowing is form some friends of mine, slightly more mature than I and walk in my World. Though I forget many of a friend until I get an email, it still amazesss me that you can grow to love and care about those you have never seen or shared a spoekn word with.

HOW TRUE IT IS

Another year has passed
And we're all a little older.
Last summer felt hotter
And winter seems much colder.

I rack my brain for happy thoughts,
To put down on my pad,
But lots of things, That come to mind
Just make me kind of sad.

There was a time not long ago
When life was quite a blast.
Now I fully understand
About 'Living in the Past'..

We used to go to friends homes,
Baseball games and lunches.
Now we go to therapy, to hospitals,
And after-funeral brunches.

We used to have hangovers,
From parties that were gay.
Now we suffer body aches
And sleep the night away.

We used to go out dining,
And couldn't get our fill.
Now we ask for doggie bags,
Come home and take a pill.

We used to travel often
To places near and far.
Now we get backaches
From riding in the car.

We used to go out shopping
For new clothing at the Mall
But, now we never bother...
All the sizes are too small.

That, my friend is how life is,
And now my tale is told.
So, enjoy each day and live it up...
Before you're too darn old!!

HAPPY NEW YEAR
& thanks for making my days enjoyable by your Blog and e-mails funny or sad .

Wally & Delores

God Bless You & This Country of Ours!
joe

Read More

Those Good Old Golden Years!

Golden Years, right fillled with AD, FTD, BiPolar, Sinus Problems, cannn't see worth a damn and no left ear drum. I forget it means gold crowns not porcelian or metal, gold hip joints, gold nee joints and oh yes golden colored build up in your arteries, aren't the Golden Years fantastic. Up my patooty. I found out today that the bottom portion, the tip area of my heart does not get any blood, so I could have a heart attack, not onew that would kill me, but probably wished it would. So we go on a medical regement and change of eating habits to help correcvt it and if that does not work we become invasive and go in and look. This is why I have DDS most people call it ED, erctile dysfunction, I call it dead dick sysdrome. It stands up and salutes then dies. Well I guess soon I won't remember what it is for anyhow, I am starting to have vague memories of what it was used for. Well I am still breathing so it is ok. Just had to expound on this crap for a minute. I thank you all for listening and being out there for all of us in my World.

God Bless You and This Country of Ours!
Joe

Read More

Lost in Time!

Wow here it is amlost the midlddle of September, where have I been. It seems like as each day passes I become less and less aware of the day, date, week, month or the time. It is all seemilgy running together. It is like today is almost a repeat of yesterday. I now have problems with some of my conversations, my tongue seems to get in the way and I get all screwed up in what I am saying, so I gust wave my hands and say latter. Which of course latter does not come because I for get what I was saying in the first place. It seems to be this whole time affect first forward then backwards, drives me nuts (that is a short drive). I find that i get more irritable as time goes on, I try to handle it but well sometimes that is just the way things happen. I did not even realise that we were this far into this mont. Halloween will be here and I will not know it, except for the candy and the tricker treators. Well I guess I will go do something, probably something of no importance, but it will be something I think.

God Bless You and This Country of Ours!
Joe

Read More

Denial, Regret, Sorrow, Shame or just Pissed Off

Some of you are aware that I am forard about my dealing with dementia. But many I hear from, caregivers, talk about the charges are in denial and non acceptance of what is. To this I say BS, I know you are true and giving people and really feal that way. But I have talked with over 1500 people that live in this World of MIne and they all knew from the start and still do. What follows is a typical e-mail I receive, filled with love, compassion and not knowing how to really help. I have left off the peoples names for their own privacy. After you read the email I hop to explain why i feel that DENIAL is not a real part of dementia.

"Hi Joe and Lynn.

Unfortunately I don't think that Mom is ready to BELEIVE that she has Alzheimer's. She is the daughter of a German farming family and is very stoic. She has never been known to share her emotions openly, and now the disease has exaberated the issue. Don't get me wrong, she is very sweet, we are so lucky that way. My sister and I both beleive that she sees herself quite differently than we do. She is 84 and was one of the "June Cleaver" type wives. We remember the frequency of the phrase "what will the neighbors think?" She retreats to what we call "the bubble" on a daily basis. The length of these visits to the unknown vary day depending on the good days/bad day thing. It is on these bad days that Mom will hardly speak at all. She goes far away and has a distant look in her eye. We occasionally have opportunity to gently remind Mom that she has "Alzheimer's". She says she knows. She has a very poor short term memory, and we see shades of the future now because there are times when my sister and I feel that Mom does not know who we are. We have a loose diagnosis of AD, but Mom has other stuff going on too. But, dementia is dementia. She has big-time vascular issues, and an aortic aneurysm growing in a spot that is inoperable due to its proximity to a previous stent. She has trouble breathing after just a short walk, and some vertebral fracturing too. The diagnosis of AD helps us clarify to agencies the urgency for financial aide and assistance. We just now after nearly a year have received the "Aid and Attendance" benefit from the Veteran's Administration. The money will help us to pay our hired caregivers and not have to worry as much about spending money that we don't have. We have been spending some money taken from a reverse mortgage and we're almost out after property taxes and a few other medical things, a tooth extraction, and a rebuilt crown, and then new eye glasses. She had macular degeneration and cataracts too. Mom will still do embroidery work, and she loves looking outside from her lift chair at her garden...and the bird feeders and bird bath...going full swing now.

She really enjoys going outside on the sneak, if you will to water the yard. I don't know why but it seems as soon as we leave for an errand or whatnot, Mom will have been outside watering. Bully for her I say.

Still has some spunk when it comes to her flowers...!



Well Joe, I think thats enough for now...gotta go and take core of some stuff...



Thank you again,"

First I say encourage here flower watering and watching. She is still in there and finds this is what she can do. Try to imagine if you can knowing that each day a little more of YOU slips away, a tiny amount of what you could due goes away. Then the process speeds up. HOW WOULD YOU FEEL? I think pretty damned pissed off and would try to hide things, not because of denial, but your own sorrow at the lost, regretting what you did to cause this (which is most likely nothing) and there is some shame with it. You are no longer the person you were, but try to be, I see that in many I talk with. I am mentally and cognitively less then I was a year aga, I even here different words in the conversations I have. I even lose who I am talking to and come back later in the conversation. I have maybe 7 years left, believe me like those that walk with me, I plan on fighting toooth and nail till it comes time to leave. Many mistake the sense of loss that we have for Denial, it isn't we weep for ourselves, because we know better than you what is happening, I may sound quite with it, trust me it is difficult to write this without crying and focusing on what I say. The email above fills my heart with gratitude that these folks are keeping the family together and working through it, They are Heros to me, because we are a handfull. Sixtuplets don't compare to us as time goes on. We will wear you down, but we still love in our hearts and souls. Remember we still have our own brand of pride in ourselves. When I started this blog I made a promise to me to tell it as it is in me and as I see it, no matter the pain caussed me or the people I piss off.If you see our side and there are others like myself who have websites and journals maybe not as cantancerus as me and myore polite and gentle, but I find not a fricken thing gentle, fun, loving, polite in this disease at all.

Thanks for your ear and being out their for me.

God Bless You and This Country of Ours!
Joe

Read More

The Tiredness of This Week

When you reach your 40's you no loger have operations, you have a procedure. So my prime caregive had a procedure, yesterday. That would be my wife of 30 years, I slept little Sunday and Monday nights, Tuesday I was up I think aroun 4 AM waiting for my love to wake so we could start this day. I spent the day at the hospital, my daughter got me home areound 7pm. Needless to say I had a hard time tolleerating my grandchildren although they we just being kids. I was alone, my wife was not with me and that meant a night without her by my side. I am still up waiting to hear when she is coming home. The procd. went a ok. But that is not the issue she helps keep me balanaced and keeps me calmed down. Right now I am lost in my World wilhout her I fricken hate this crap. When I am babbling she understands me somehow, because I sure don't. These days do not help this wonder piece of a brain that I have nor my emotions or tolerancee. I almost wish I would cross the line and no longer feel this way or my Lord would just take me home. I have almost died several times in my life because I am so mentally solid, but neither he or the devil have wanted me, that makes a person feel pretty unloved and unwanted, when neitherr of them think your good enough to go live with them. I am just babbling and have lost where I am at so to all:

God Bless
Joe

Read More