Showing posts with label lewy bodies. Show all posts
Showing posts with label lewy bodies. Show all posts

Friday, November 2, 2012

To all those on the East Coast my prayers and hopes go to you in your hour of need. Only you know your real pain and frustration with getting the help you need. It will get better I believe that, just stay fast and believe. Hurricane Sandy left you in one hell of a mess and I wish I could change that for you.

I have been home now about a week i think. I have been informed that my timeline of our trip is a bit screwed up and locations, that does not surprise me. Time and days all seem to be the same to me and have ben for some time now. So I guess at the day. Loooooking at the alendaes not help, since i donot know what day it is. I am still very tired from the trip, but glad that my daughter got to check off of her list somethings she has wanted to do.

I am really confused with this disease, my short term memory of late seems betterm but my long term seems to have gone on vacation. Alzheimer's truly affects us all differently but still progresses to its final run.

Many of you know that all this rah rah rh about bresast cancer burns my ass, because the main stream seems to not care about us. I want no one to get cancer and surely not this disease.  Here is my problems did some reasearch and found out form the CDC and Breast Cancer.org that in 2011, 39,250 people died from breast cancer, that is both MEN and Women (mostly women). Yes men we can get it also. That was another 3-4% decrease. Frolm the CDC and other agencies that collect this info that in 2011 somewhere between 82,435 to 83,208 people died from ALZHEIMER'S, both men and women and ladies here is the kicker your made up the majority of those deaths.  So again I ask: Which is more important BREASTS or YOUR BRAIN? For me take my breasts and my genitiles and leave my brain alone, but at last I and millions have no chance for a cure or real help, Think about it.About 78 seconds each day another person is diagnosed with Alzheimer's, they receive their double Death Sentence, first there being then their life.

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

Tuesday, October 9, 2012

New Song

you can turn off my usual song if you wish. I do request you listen to the new song I have embeded from You Tube on the right. I cried.

I will be going on a road trip with my youngest starting next monday, so i may not post for awhile. We will head to Chicago, stopping at zoos on the way, and then seeing some of my old town. We are going to THE CHICAGO BEARS GAME vs detroit lions on the 22nd. Then will be heading home. To tell the truth i am afraid of this trip, i will be away from my security place, away from lynn, my fish and that which i am familiar with and that scares me.

In a prior post i believe a gave you a link to a new short film, Shattered Love, that is in production for you review. I have yelled long enough about a voice on this blog, so when asked I decided to put my money where my mouth is and have become an executive producer, on of some.

so there you hav it from the big brain in Oceanside, CA.

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

Friday, September 28, 2012

Welcome to our world of dementia, Jim McMahon.

Some or many of you do not know Jim McMahon. He was the quarterback for my Super Bowl Champions, The Chicago Bears is 1985. To me one of the great one's, not afraid to get hit or do what it took to win the game. Not like some of the sissys today. Jim at the age of 53 now has dementia, not Alzheimer's, Lewy Bodies, Frontal Temporal or any of the others. He has the new one specially named for retired football players, chronic traumatic encephalopathy (that was cute and paste). Comes from toooooo many wacks in the head they say. Sorry Jim, you are still a favorite of mine, but now we have something in common, brains kind of scrambled.  I often wonder if my Alzheimer's and Frontal Temporal Dementia are not tied to the wonderful car door slams to my head that my wonderful asshole of a father took delight and delivering to me. Or the hits in the head by the swings in school or those from the teeterboards or whatever the where. Possibly my wonderful abilithy to fall and crack my head on the cement. Oh well whatever the cause we have it don't we Jim? Truly i am sorry for your condition, it is not fun. Believe me I and millions of others know that and wish you well. You can always contact me and we can chat, talk or write. Just know there are a great number of us out here who stand shoulder to shoulder with you.

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

Sunday, September 9, 2012

Where the HELL is my brain?

The last couple of days have been really a fricken mess. Right now I can think kind of stratight. Over the last days I have forgotten what i was doin, how i got where I did and from where i got there. Talking has been utterly confussing even to me. I have needed help in getting around physically, legs did not want to work, when they did they wanted to go somewhere other than I was headed. Good things for walls and hand rails or I would have surelly met the floor. That damned thing kept moving on me. I feel like a plane, i have to make a wide circle to get to where i am goinging. Things seem to be happening quickly now, with more and more bad days and days i cannot remember. I can no longer tell you by the evening what I did in the morning , let alone yesterday and the past is fading as well. I am starting to feeel best just sitting in quiet and not talking or being talked to or having the boob tube on. It has become dangerous for me in the shower. Good thing it is not real wide or I would definitely get swaying from side to side and go through the doors. Even sitting on the seats we have in it has become an experience as my wet ass slides off and old shaking legs can barely keep me up there.

Till next time, be good to yourselves.

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

Friday, September 7, 2012

Radio Show

To listen to the radio show I was on, you will find link on right hand sid. I would make the folowing sugestions:

1: Turn off my intro music first. You can push the button under Josh Groban on the right hand side.
2. Click on the Radio show icon and wait for it to load, a few seconds.
3. You can slide the bar forwad to skip to my segemente if you wish, otherwise show is two hours long.


Enjoy.

God Bless,
joe

Sunday, July 29, 2012

Hi All!

This week has been difficult. My daughter is down with her hubby and 4 kids, and of course my other daughter and her 4 kids and hubby come over and my son and his sweetie, my wife, mother-in-law and youngest daughter, just waaaaaay toooooo much for me. I have to admit things have been ok, but then i must confess i have used extra meds to help. Monday i completely came apart and i guess i was less than friendly, rather a bastard. So appologies had to be ginen, i hate those things. We were at the Write On, book authors of Oceansided get together yesterday. That was fun, got to ride my new scooter and meet other writers and make some friends. Do not ask me who they are I have no idea.
This disease is a real brain buster, sometimes I feel like i am ok and others i am in another world. damn things switches on and off throughout the day, drives me and those around me a bit batty.my headaches are getting worse, but doc says things are ok, but what the hell do they know, they just practice medicine. I am very drained this week and the kids will all be back today - Oh i can hardly wait. well back to the drugs and some food. Even met more folks who have loved ones with this disease Saturday, amazing how they are comming out of the wood.
Take care of yourselves to the next time.

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

Saturday, July 21, 2012

Oceanside's Cultural Art Center

Should you happen to be in Oceanside, CA on Saturday 7/28/2012 the center is having what is called "Write On", event.  Featuring the authors that live in Oceanside. More info Click Here!!!!!

Bet you cannot guess who will be there. So if you are out and about that day stop by.

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

Tuesday, July 17, 2012

The Death of ?



A short story by Joseph V. Potocny

Let us go back in time as far as our minds will travel till when this war began and the battles raged on day and night for centuries.

Our setting is in times of old, set among the rolling tree lined hills and grass lands of a land known as the LAND OF DARKNESS. Through the glens ran rivers filled with fish and clear waters and lakes that sprawled across the land.  Many a village dotted the landscape with one mighty fortress in the center of all that could be seen. The villagers went about their daily business of selling goods, cleaning their shops and homes, repairing their roofs and greeting one another. In the background one could hear the noise of battle, the clashing and crushing of metal and the helpless cries of those engaged in this never ending war that seemed to have no rhyme or reason to it. Yet one could hear the roar of cheers and adulations being boosted upon the victor as the gayety of the event went on. For years the war raged with hardly a person caring who was or was not winning; only that it gave them excitement in their otherwise hum drum lives.

Then came a cold and blustery fall day, the skies were darkened and the winds swirled throughout the land. The reviewing stands were filled to over flowing with crowds of frenzied on lookers. It was difficult to see what was taking place through the dust and debris flying in the air. But yet all in attendance cheered and screamed and ate all that they could and laughed among themselves. Suddenly two hours past the rising of the sun in midday sky the clouds began to part. The massive clouds of dust seemed to clear and a quietness never before felt in the Land of Darkness could be felt. People closed their eyes, covered their mouths and ears as they gazed upon the carnage that years of battles in this war they really cared nothing about could be seen. DEATH was all about the land, where it was once green now it was scared and torn by the ravages of the war. Ones they had known for years were among the slaughtered and dismembered bodies that lay for the scavengers to feast upon.  But not to worry, they were safe in the stands and had others to talk to and while the time away.

Suddenly could be heard the thunderous ponding of the hooves of a mighty beast coming towards the field from the east.  All turned their eyes and cheered wildly and appeared a mountainous mass of a steed black as coal with what looked like the very smoke of hell coming from its nostrils. His mighty hooves gleamed in the sun and as they hit the ground one after the other a shaking and rattling of the stands could be felt by all.  The crowds went wild, when atop this mighty mount sat the Black Knight.  His dark plumage all twirl in the wind, armor black as the night and gleaming. His battle axe hanging on his side, a might mace stuck in his saddle. As he rode towards the crowd his lance stood tall in his mighty arm, with his colors of red trailing behind it.  He slowly made his way to the east end of the jousting pad and sat so tall and mighty that he seemed to block out much of what could be seen.

From the west end of the battle field a soft but mounting laughter started to be heard.  All eyes turned toward that end of the field and there they say the cause of this gaiety.  Standing there on a Roan Steed was a war torn and embattled knight. His stature was not even half that of the Black Knight.  His page even had to help him stay steady on his charge.  The crowd could hardly contain themselves as the starter slowly made his way up the tower to play his part in this drama.  As he neared the end of his climb the weather seemed to change, a chill entered the air and the skies seem to darken, by this time night was starting to fall.  The Starter reached the top of his post he showed the white cloth to the Black Knight, who dipped his lance in acknowledgement.  He then turned to the old knight and he dipped his lance toward the starter and almost dismounted.  None of the money changers would take bet on this battle; one could plainly see who the victor would be.  The starter dropped his cloth, the Black Nights mount could hardly be contained waiting for the cloth to strike the ground. 

The Cloth hit the ground the massive beast reared and roared a mighty sound and the smoke of hell came forth from his nostrils. His mighty feet hit the dirt with such a force that the earth cracked, mountains trembled and the reviewing stands did weaken. Forward charged the Black Knight with his lance lowered.  The Old Knight sat himself right and lowered his lance and started his charge. Suddenly seeing his braveness and lack of fear the jeers started to turn to cheers. They charged towards one another in the dimming light and met with such a clash as never before heard that many fell out of their seats. A cloud of thick and dark dust was swirling in the middle of the field. The sound of metal ripping, wood snapping and the cries of pain and horror could be heard. Then all went silent. No one knew what had happened. But slowly the tail and hind quarters of the Black Knights mount could be seen. Soon the knight and his entire mount were standing tall at their starting point. Where was the old knight? A light rain and breeze came up and the center of the field could be seen. There laid broken battle axes, maces, the Black Knights sword and the proud Roan Steed. But the Old Knight was not to be seen.  All were just besides themselves, how could this be? Then one cried out look. As all looked to the west end, there standing in the setting sun was the Old Knight; how he was able to stand no one could phantom a guess. But yet there he was standing, with half a shield, leaning on his sword and bloodied beyond belief the battle that had just been fought.  As the last rays of the sun cast across the field the Starter raised his hand, the Black Knight raised his shield and so did the Old Knight. Down came the starters hand and like a blur the beast from hell was racing towards the end of the field. The Black Knight lowered his lance, which was already drench with the blood of his opponent and took deadly aim. Darkness fell just as the two met once again. This time the collision had a different tone to it but still there was so much dust and in the darkness hardly a thing could be seen. Finally, after what seemed like years the moon broke through the clouds and the wind swept across the field once more, to reveal the finality of this battle.

There at the west end to the amazement of all, laid both the Black Knight his charge and the Old Knight.  Pages ran to the scene to see what was and signaled to all that both were dead.  The crowd demanded the helmet of the Black Knight be removed so they could see who this valiant warrior of so many battles and years was. However his face was so deformed and twisted and hair all in knots that no one could tell who he was or where came from. The Old Knights page removed his face plate to reveal his master, instead of a face a spiral plume of bluish white smoke ascended to the heavens. As is raced upward a great sound could be heard and then a burst of silver, gold and white flakes fell towards the earth. All could hear the words clearly, I Am Free, finally.  The flakes fell across the entire battle field and all that laid there was consumed as if it never was.

All looked to where the Black Knight and his companion had laid upon the field.  A twisting wind blew across the spot and there where they had lain was written: My Name Was Alzheimer’s.  The crowd now knew what they had not done, but one lone soul sacrificed their life to do.

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

Thursday, July 12, 2012

Alzheimer's Time Line -- New Page

Please note the new page added to my blog - Alzheimer's Time Line. This info is from Fedelta Care Solutions. Hold many facts and figures. I hope you find it useful. While there check out their other resources.


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

Wednesday, July 4, 2012

A week gone & Happy 4th to All.

I am glad that last week has past, the crashing out of bed, 8.5 hours at the hospital on sunday. Monday got to relax, the tuesday spent  2 hours iat the dentist, proded and poked and xrayed and open and shut measure this and that, looking into a apnea device for my mouht the mask and i do not get along at all. Then wednesday, good old phychiatrist, they are so non commital and say keep doing what you doing, well i do not want to. Dieing sucks, not knowing what day it is anymore sucks, forgetting where the day went sucks, life sucks so there. Then spent hour and a half at the eye doctors, how wonderful, pull this lid then that one blind me with this light agnd then the next put drops is to measure pressure i guess, that process was met with a bit of resistence, you do not touch my eyes. Then we put all types of drops in them so I can no longer see shit and they take pictures of them. Finally the Doctor arrives and he fuckin blinds me with lights. We discuss a cataract that is in the left eye, he suggested to leave it for now and not operate, smartest thing i heard all week.  But need new glasses.

This week comes and somehow some way a sctrewed up my back and need my brace to move and my scooter to get atround. I know it ends sometime, but when is that time. i forgot what i was going to say.
Oh well take care.

God Bless & Keep You & This Country of Ours - Especially OUR TROOPS.
joe

Tuesday, June 26, 2012

Where the Hell did that Buick come from?

Yes early Sunday AM about 5:15 or so i am told, I was struck in the back of the head, neck shoulders and back by a buick. I think an ol 1956 Buick Roadmaster for those who remember those tanks. That is what it sounded like. See I was having this wonderful dream, I was young and agile again (you know that is a dream), i was playing in traffic in the street, playing dodge um with the cars and doing just a outstandting job of winning. I made this magnificient  summer sault to avoid a car and go to the other side of the street to the sidewalk. Then it happened CRASH, BAM POW, Holy Cow Batman, laid out flat this Buick had done me in, sneakoy devil got me from behind.

Well after hearing my name called  for who knows how long there is my wife asking me if i am ok. Well i did not understand how she got there. The truth be known Mr. Gymnist here apparently did a leg flying high twisting of this very fit body of mine, right out of the bed. In the process I struck my left ear, back of my poor little head, neck and shoulders on the bedside table. Not to mention my fat ass on the floor (that was the real crashing noise).  Later in the day when I confessed i could not see well, my head hurt, hell all of me hurt and was more unstable than usual, physicallly that is, we spent the next 8 ½ hours at the wonerful Hospital Hotel. Had a CT scan and it showed the following:  No definitive intracranial hemorrhage.  There is a focus of increased density to the posterior left temporal lobe. No skull fracture. Mild sinus opacity. Basil ganglia calcifications (and my very favorite medical language) and other incidental findings. I guess they found a brain cell.  One good thing the basil thing which has never shown or have I been informed of in right on that part of my ginormous brain that controls your balance, and is an old brain injury that continues to calcify.

What a day. Take care of yourselves.

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

PS. anyone finds that Buick it is mine.

Monday, May 21, 2012

As The Door Closes.

sounds like a soap opera, but that is what is happening to my life. My eldest and her group were here the other day and when I said goodbye to my granddaughert who is 9, she aaid grandpa why don't you call me that name anymore when we leave and i did not know what she was talking ablut and asked her, she said oh it is ok grandpa, you just don't remember things anymore. That kind of hit home as to she understands and can see the changes taking palace. My daughter and I think it was the same day told me she missed me and i was really lost on that one. I just looked at her and she told me she misses how we would jokw around and that i do not do that much anymore but she understood that things were getting harder for me. It almost felt like she said goodbye while she still could. Right now i feel like shit and am not in a good place, which seems to becoming normal. Oh well It is What it Is.

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

Monday, May 7, 2012

Alzheimer's Disease Research Review

'via Blog this'
Summary Look at some advances.

God Bless,
Joe

Monday, April 23, 2012

When Is Enough, Enough? NOW!

For a number of years now my friend Ken in the UK has been blogging about LWD, Mary and Jim in Canada about AD, Karen in Israel about AD, Carol and Herb, and a host of others about AD, victims of the disease, Alzheimer's. Including me. But this broad coach that has AD now is ELECTRIFING THE WORLD according to the good old Alz.org. I guess the rest of us are chopped liver, we have no fame and glory. I have expressed by displeasure in the past for the Alz.org and their lack of ability to take the bull by the horns, I am only one person and make no diff to them, but as of today all my advocate ties and other assosiations with them do not exist. I have had enough I no longer choose to lower myself to them. I will continue to write here and tell how life sucks with this disease, how my conversations run a muck and I slowly become whatever. Those that come and read fine, those who don't oh well. Frankly i think my blog has run it's coursse and does not reach out anymore. But it is an outlet for me, and that is all that matttters anylonger to me.
Thank you all for your words about my bird. She was a peachfaced lovebird.  Known like her owner by many names, but she was my friend and I still talk to her, have not been able to move forward, oh well in time my brain cells will.

Take care of yourselves.

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

PS i know after this post i will think of things I wanted to say, then forget them.  Before i go, those of you who might remember Yolanda for The Memory Loss Tapes, as of two days ago she was still alive and kicking. I keep check on those in hte HBO special, even though they don't.

Friday, April 13, 2012

Sadness in one's life.

This has been a hard week for me. My bird died Easter night. I was the only one that could handle her, very picky with people. Her leaving has really messed me up, i come down in the morning and go to uncover her and feed, water, bird talk all that knid of stuff and no cage. At night I want to cover her and say goodnight again no cage or bird. She had been ill and sitting with me at nights for long periods cuddeling and sleeping, i knew time was near, but never expetced feeling this lost over it. I look forher cage and it is not there. Change is not good for me anymore I have problems with it now. I find I am angrier inside now than ever, but I fight not to let it out at others, i just leave the room come st here at this beast and do nothing or go in my bedroom and just lay there for awhile. I find the tremors and my balance worsening daily my head seems to be screwe on sideways this crap has to endlife really is beginning to suck big time. well that is the hand i have drawen and have to play.

Take care of yourselves.

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

Tuesday, March 27, 2012

Hello

just a note to say i am still here.  my days are shorter with sleeping a lot. have reduced meds. my brain is not lear on what to say all days seem the same, nothing seems to become any clearer  i just do not know what it is that i want to do anymore, wife leaves things on the calednar and well who the hell looks at it not me. I cannot remmmeber one moment to the next. my sense of humor is also leaving. You know i get upset and then am told to calm down and what i did or said is wrong. pisses me off. I feel like just not talking anymore, hell things do not come out right and then i get those looks, you know them you have given them yourselevs me too. I am starting to feel that this is my fault, although it isnot. It is just hell inside this mind of mine and growing worse by the day. With those of us out here telling, yelling, being gentle, when the fuck do we get heard. screw the rich and famous most of us are regular folks and our stories are important, i think but mainstream does not even those orgs that are supporedlly their for us.

take care and be good to yourself.

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

Wednesday, March 14, 2012

In The Moment!

As many of you know i have also fought my disease of alcoholism.  The program i joined taguht me to live one day at a time. Taking things as they came and dealing with them without the use of my friend Jonhn Barleycorn. Now I have a disease, Alzheimer's and Frontal Temporal Dementia, which have robbed me of those memories that i was told to keep green, so I would remember my life with JB and the hell that i lived in. Those days and other memories good and bad are all becoming only words to me. They are starting not to carry the pain, joy, saddness, hapiness , etc of my past. Alzheimer's has now forced me to live in only the minute, not even the day, I can do something at 8am and by 8:30am it is gone, not even a memory only a few words exist about it. This is becomming more and more my life. Living only in the moment. I guess that is how we are reallly to live, but this is new and confussing to me. It is about 7pm here and I cannot tell you what I did an hour ago.This fuckin disease really robs you of things and it is taking more faster and faster. But I still have ½ brain cell that refuses to give up, so I can tell you of this journey at least for the moment.

Take care of yourselves.

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

Monday, March 12, 2012

Care Givers Listings

I have added a resource list for caregivers and nursing home guides. To help those of you who take care of us get help and share your stories with others. Hope you find this helpful. All of the slistings come from emails i received going back over a year or more, so I am slow at getting things done. I still have others to go over before I list when I next remember.  Enjoy.

I think i got the links correct, i know you all willl let me know if not.

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

Thursday, March 8, 2012

GOD'S SENSE OF HUMOR

I got the following from a friend you all know i enjoy all forms of humor, I live with me that explains it.

While creating women, God promised men, that good and obedient wives would be found in all corners of the World.


And the HE made the earth round.


I have added some names to my In Memory Of page. I only have the names and dates they were set free, no pictures. I will add anyone's name to this list that you send me that past from any form of dementia. Pictures are nice, but any way we can remember these folks is great.


I am still looking for myself, i just keep missing me. Yesterday for the first time that i can remember Lynn yelled at me. I have to say it schocked me and made me sad. I guess I was taking to long to answer a question and kep on taling about other things and her frustration with me jsust blosommed like a flower. Oh well now it begins.


God Bless,
joe

Tuesday, February 28, 2012

I'm Back!

Back from where who the heck knows.  By the way if you want to cotact me or Lynn directly just email us at:
joynn1@cox.net  make sure you put in the subject line eitehr my name or Lynn's so the right person gets it.

If  any of you out ther suffer from this damn disease and have nowhere to post what you want to say, email me with a post and if it meets our extreeeeemly high standards I will send you back an invite to be a guess bloggger on this site.  Rules: simply total honesty, correct speling not an option, be ready to catch flack from rest of this World family if you get out of line; if your postings are inappropriate I will remove your privilidges.

Posts must relate to any form of DEMENTIA or your direct care of one with Dementia.

my computer is now bakc and running, maybe i will be to.

God Bless,
joe