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

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Alzheimer's The Relentless Predator!!!!

I have not talked much about me lately, been trying to give you other info.  But this blog is about my journey into neverland. Yes it is a voygae to places I do not know and people that look familar but yet are strangers.

I have been pretty lucky so far, but that is runnning out, the physical affects, my emotions and mental status are starting to change rapidly for me. Lynn has to wakee me up because I fall asleep while eating. I just stop in the middle of things, I sleep at the drop of a leaf and i forget what the hell i am talking about. My hearing is gettting worse, it never has been perfect, but the words I hear from people are becooming completly diferrent from what they are saying. Mornings use to be fine for me, not anymore, I get up still around 8am and out of bed, feed the she devil bird, my attack fish, take my meds hopefully, that all takes maybe an hour. And there I am sound asleep on the couch by 9:30 or so and completely unaware really of things until after noon.  Not that i become a mental genius suddenly but the fog clears for awhil not long anymore. I guess the 8 year path is right i am now in about year 6 or so and things are going away from me or I am going away. Not sure anymore. But you folks have been a blessing in my Life.  The Alzheimer's and Frontal Temporal Dementia are doing there job and getting much better at it. To all that bought my book Thank You, your money that I received has mostly been donated to The Alzheimer's Research Foundation.

so much for today, you all take care of yourselves.

God Bless & Keep You & This Country of Ours!

joe

PS> Last I Knew Alan Rogers was about to ascend Mt. Denali in Alaska, i think it is, and upon doing so that will be the 4th summit in his 7 Summit Climb for Alzheimer's. God be withyou Allen.

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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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Click Me Find Out Those of Fame That Died from Alzheimer's

To those that went before me, I am trying to give you a voice as well. The title is a link to a listing of those who of fame have died from AD.  And Still the medical profession and sorry for this Alzheimer's Association have done crap to help us. Lot of studies, lots of meds, NO CAUSE, NO CURE & MEDS THAT DO NOT REALLY WORK!!!!  Only true diagnosis, cut the brain open at death.

The closer i get to the end the angrier i get at this world of ours, 2nd most dreaded disease and who talks about it. So Called Experts, who really have no idea what we with it go through, WHY?, because they do not listen or ask they know it all.

Everything causes it and everything can cure or hault it, in the end all this fails, we just fucking die. Cancer Society song is Happy Birthday, great for the survivors which there are millions.  Alzheimer's new song, So Long It has Been Good To Know You!!! no survivors.  Yes there is anger in me today, not for myself but for those that do not speak out without concern for hurting peoples feelings and not being polically correct.
I stand at the gate to this World of Dementia and I put out my had to each that enters every 70 seconds, to welcome them, to tell them they are not alone regardless of the failures of their fellow man to really help them.

Go ahead an rip me a new one. I am ready, but when you do prove me wrong and show me that ONE SURVIVOR.

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

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Hears a thought

How many caregivers out there ask the person they are caring for "How do you feel about having this?" Or "How do you feel when you can't remember?" I know Joe has communicated to me and has been trying to do the same with all of the readers he has. It is a tough concept to ask thses types of questions. What Joe has been trying to communicate is that there is alot of fear with this disease. He has sat down to eat dinner and forgotten what it is he is doing and how to do it. He is scared of the person sitting next to him even though he has known that person forever. We do not go out alot because he is afraid to go past the edge of the property because he may not come back. This has made a man who would willing take on the South Side of Chicago to do his job, someone who jumps when I walk up next to him. What we take for granted the pepole who have this disease no longer can. Joe mentioned that I had taken a job as a caregiver. I was taking care of a perfectly sweet couple who both had AD. Everyday while I was there we had the same discussions. "Where is my car?" "Why can't I go to the bank?" "It is not fun getting old because you get no respect from anyone." I was sorry when I decided that I could no longer work for this company because I will miss the couple. Try listening to your client, loved one, neighbor. They are trying to say hear me but most of the time can't.
This is what Joe wants on the TV shows, and the newspapers, and the articles that are written about the disease. We all know that there are people dying and we know the medical field is working on a cure for a disease that they don't know how it starts. I have never heard of brain cells regenerating. But then I don't have a degree.
This is the story that needs to be told.
And if it sounds like he is kvechting so be it send him some cheese and crackers. He'll love it.
Lynn

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What's in a day

Let's start with how Joes' day goes. He gets up and goes in and turns on the computer. We moved it upstairs after our son moved out. Then he goes down and feeds and waters the bird. , takes his meds. That may or may not tire him out so he will sit and most likely fall asleep sitting on the couch. On Fridays that is towel day. He gathers all the towels in the house and washes, dries and puts them away. This could take anywhere from an hour and a half to all day because he has forgotten that he started them, and most likely will sleep again. He has his tacquitos several times in a day or not depending on wheter or not he remembers if he is hungry. We all ask him if he wants anything. Then there are the times that he is staring off into space and you ask if anything is wrong and he shrugs and says Ehh. Yesterday I asked him and he said that he was tired and did not care anymore. He wants to go home. It is getting harder for him to get his thoughts across and out to us. We play alot more charades. It is a good thing I know how his brain works or we would never have a conversation.
I think that is enough for now and will do more later.
Take care
Lynn

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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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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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Trying Hard

Well Joe is trying hard to keep up with things but they are getting away from him. He is working with the people with the book and it is taking a toll. He gets frustrated with things and I don't blame him. You give explicit instructions and they don't follow them. Well he will keep trying. We can be in the middle of a conversation and he drops off to sleep or he talks to someone else in his head. He is taking alot more naps lately. He is going to try and do the memory walk with us on Nov. 6. It is one mile from the pier by the beach and one mile back. I told him we would pick him up on the way back if he can't make it. The grandkids might walk it with us and my mother will be there too. So things are moving along here.
Lynn

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It is what it is

I have been trying to think how to say this... I am angry.  I am royally ticked off at this disease. I am ticked that I do not have the man that I married anymore.  Yes I understand that I am not the same person that he married and that we all change.  That is how it is supposed to be, but this is different.  They lose themselves and we lose them.  I got my haircut over the weekend and Joe has asked me twice now if I got my haircut.  I can't take my frustration out on the guy who cuts me off on the road, I can't yell at the broad who runs the stop signs in our neighborhood,(well I can but it does not do any good),there is no one to lay the blame on when Joe is sitting and wondering where he is or who he is talking to.  I try not to get frustrated with him when he is in a foul mood because he does not know what is going on.  I can't yell at him because he does not always understand why I am angry because he doesn't know that he is aggravating me because he who used to make snap decisions now can't decide what he wants to have for lunch.  He takes naps at the drop of a hat and leaves right in the middle of a conversation.  Not physically but mentally. We were talking about some stuff the other day and he asked if I was disappointed about something and my response was not disappointed but I have to learn to understand that it is what it is.  Our lives are all about that now.  When you come to grips with the fact that this is what we have to deal with it does bring a little peace.  Not alot but just a little.  And there will still be those times that I may lose my patience but I need to remember that  "It is what it is".
Lynn

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