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

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International Stem Cell Awareness Day - 10/3/2012

I was approached by the following to post something on Stem Cell Research and how it can possibly help brain disorders and others. Normally I do not do this but I found this interesting and thought you might also. I did not write this as you will see, the company is acknowledged and the end and I was given written permisssion to post it.

Five Factoids on Stem Cells

International Stem Cell Awareness Day - October 3, 2012

Stem cells have the potential to revolutionize the treatment of human disease. Scientists and researchers have been working diligently to unlock the potential of stem cells and significant strides have been made in the less than 15 years since the discovery of a method to grow and replicate human stem cells. Stem cells allow scientists to study human development (and how it could go wrong), develop better and safer drugs and offer potential treatments for devastating diseases and injuries.

#1: Stem cells are “master” cells that have the ability to grow into any one of the body’s more than 200 cell types, including brain, blood, pancreas and heart cells.

#2: Stem cells can reproduce into red cells that carry oxygen throughout the body, white cells for fighting infections and platelets that create clots and prevent excessive bleeding.

#3: Stem cell research is predicted to improve treatment options for incurable conditions such as Alzheimer’s disease, Huntington’s disease, Parkinson’s disease, spinal cord injuries and traumatic brain injuries, among many others.

#4: Scientists are conducting stem cell studies to develop cures for the more than 1.3 million Americans that suffer from spinal cord injuries. This is highly significant because no other form of treatment or drugs have been able to restore function for patients with paralysis.

#5: Stem cells can self-renew. They are capable of replenishing themselves for long periods of time. Through natural division, one Petri dish can hold up to 5 million pluripotent stem cells meaning scientists can create normal human cells in large scale for the first time in human history.

“This is a critical and historic time for stem cell research,” said Peter Donovan, director, Sue & Bill Gross Stem Cell Research Center, UC Irvine. “We’re literally on the brink of developing new treatments for countless life-threatening illnesses and debilitating injuries, and raising awareness about this research is one of the best things people can do to help accelerate the process.”

There are several research programs taking place at the Sue & Bill Gross Stem Cell Research Center at UC Irvine that continue to break down barriers and open doors to new treatments for major diseases and injuries including Alzheimer’s Disease. An estimated 35 million people worldwide suffer from Alzheimer’s disease, five million of whom live in the U.S.  Frank LaFerla, Ph.D., director of UC Irvine’s Institute for Memory Impairments and Neurological Disorders, andMatthew Blurton-Jones, Ph.D. of the Sue & Bill Gross Stem Cell Research Center, UC Irvine, have shown potential treatment in humans. Their work with stem cells is expected to move to clinical trials within five years.

Support stem cell research. To learn more, visit www.StemCellsOfferHope.com

Sabrina Suarez

Vice President
12711 Newport Ave., Suite H

Tustin, CA 92780
P 714.573.0899 x227

C 714.606.6934

 

God Bless & Keep You & This Country of Ours!

joe

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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

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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

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Alzheimer's Disease Research Review

'via Blog this'
Summary Look at some advances.

God Bless,
Joe

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Alzheimer's - Who Am I Now?

The last week or so has been less than wonderful, in fact I have lost most of it, every time i turnned around i was waking up. Yesterday was the worse of them all. I got a real look into the future so to say. I was not doing well mentally and as I went downstatirs I think in the morning some time i just stopped on the landing. I recall someone telling me to come down offf the statirs. i think I remained their for I am not sure how long. I know i was not sure where I was or who was talking to me and trembling, I think that is why i would not move. because i was to unstable. I got downstairs and wet to the refrigerator to get some soda to drink. This lady was talking to me and asking me how I was and all that type of shit. Finally I asked her who the fuck she was. I think she said your wife Lynn, I just looked at her and nothing. I wondered why she was in my house. I left the kitchen and went and sat down. I rememger being told what day it was by more than one person and that I seemed out of it. Finally I recognized Lynn. But the rest of the day was really messed up until late evening.

So now for the time being I have some knowing of what things are going to really be like first hand. Physically i am having more and more trouble moving.  My conversation with others is getting more difficult and less, oh what the hell, speakable cannot think of the right wording. That is becoming harder, finding the words that fit we play guessing games with me as to what I am trying to say, i guess i am refining my language, joenese, to a more pure form, which I do not undersstand.

Until next time be good to yourselves.

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

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The Remember Song

Before i give the link to this song, I want to answer Dana's question. First no question that i am assked on this blog is to personal. I have nothing to hide and wish to share all that i have. I do not take Aricept, Namenda, or Exlon (or whaterver it is called) nore the other two drugs for Alzheimer's and other forms of dementia. See I wrote all this dow so I could do this post and not use my ½ brain cell.  I did use the A&N drugs, however I got worse on them and suffered other sided affects, the nuerolgist that I went to, the best in California, told me to flush them and go on and enjooye the rest of the time I had left. So I did. 2 other neurolgists feel the same. I know some folks say they help, my issue is do they really or do theose at least some that take them think they do because that is what they were told. Read the comple pharm reports on them and you will see that they are not sure if they will work. The only medical advice if any that you will get here is talk to your doctor and make them talk with you not at you it is your body and your life. So there!
Anyone no matter were they live in the wolrd can order my book on my side for the shippping only price. Yes Karen it costs more than 6.95 for me to ship out of the states, but that is my contribution to get the word out. Besides a paid a bundle to publish it, rich i will not get, my purpose is only to share this World with others.l

Now for the link which has the credits for the song:
The Greatest Alzheimer's Song Ever!
I hope you find the humor and truth in this song. By the way I about fell out of my chair listening to it.

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

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My Life and Times With Alzheimer's.

I havenot posted is sometime. I have not been around for sometime. My brain has been on Jupiter and I on Pluto. Last few weeks have been very trying and uncomfortable for me.  I am not used to being sick alot, but I guess I have no choice in the matter. Also  have become more i guess you would say going in different directions while triing to go forward. Things are finally catching up.  I am getting more and more losst in each day, for get talking to people that is becomin a chore. I still can come here and tell you how shitty it is getting.Iknow that we hada howuse full on Thanks Giving and I have been not with it since then at least. We are dog sitting or I guess we are seeing if we will be keeeping my one daughters dog for a whilce since the are moving. Just another thing to get under foot. So far thisis becomming a rather crappy holiday season, and it is nobodies fault. It is just my constant companion Alzheimer's moving in the heavier furniture for its final push however long that may take.

To my friends in Israel, you asked for my father and mother's names well real hard on the father, Joseph, my moms name was Muriel.  Both have been gone for sometime, my mom over38 years and my day close to23 years. I have been very touch lately by those in other countries that have written me and I am glad that they are part of this family of ours.

I want you to know that Yolanda Sanmartino who was in the HBO Documentary is still alive and with us and of course me. We are the only tow left from Memory The Loss Tapes, and at least two of those fetured in the Caregiver part have past. Friends keep me posted. Out of 10 people seen and spoken of in the documentary only two of us are left that I am aware of. This show was done in 2008 and released in 2009 mid year. So in that short period of time 3½ years, eight have passed and most all in the 8 year or less time span. I keep being told how this disease affects people dirrerntly and I am aware of that but it still claims us when it has finished us. But what sweet freedom afterwards.

Everyone says that there is nothing good about Alzheimer's or other forms of dementia, wellI am here to tell you that it has put me at peace about dieing and that is good, it also is starting to rid me of not only good memories but many of the ones that causea great deal of pain and let me tell you that is good.

Well my head is staring to wander and hurt, take care till next time.

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

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Thanks for the Memories ( Bob Hope)

thank you for the birthdaay wishes they were much appreciated. See how sneaky my wife is.
To Karen & Kathy, sorry I lost your orders in my mess. Books are going out tomorrow.
See and you all thought I had my head screwed on right, wrong.
Life is getting more confusing and so am i. Have a Happy Thanks Giving you and yours.

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

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National Alzheimer's Plan Phone Call Results

'via Blog this'

Read and comment. I listened to this entire call and state how i felt. I was interviewed but not made part of the call. After all I have Alzheimer's and am not a caregiver.  Click on title to get the full report.

God Bless,
joe

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What do they know about Alzheimer's really?

I was reading best I coudl an artickle in AARP to day called: Diagnosing Alzheimer's by Katharine Greider. Interesting a lot about nothing, they know they have no tests or real meds to help us, gosh what a fricken surprise.  A Quote; "But scientists don't yet understand exactly what various results of biomarker tests mean for each patient or how they can be used to predict a patient's future. (i typed this from the article.)" Eli Lilly has a drugg Amyvid which is an injectible radioactive dye to stain amyloid deposits for use in PET Scans which may help.  quote from article: "The drugmaker says Amyvid would be for old people with mental decline wose diagnosis is uncertain." you judge that one. This is the best part of the article and only part that is truly reaal in my opinion.
"It will likely be many years before any test can predict precisely who really with get the disease, and when," says Frances, who has helped establish guidelines to iagnose mental disorders. "In the meantime, there will be lots of continued hype about progress in testing," hes says. "The best thing mos people can do is simply ignore it. Instead of worrying about Alzheimer's you should make sure to exercise you mind and body, eat well, don't drink too much, and enjoy life."

Exactly waht my neuroligist a number of years ago said to me, except she said dump the meds they are not going to stop anything. Keeep my shrink so he coulc give me the mental calming drugs and mode stabilizers I would need. And enjoy the time I had left.

Now to those who keep telling me just because you forget placing your glasses, keys, appointments, pens, etc. does not mean you have Alzheimer's. CORRECT, but when you do all these things daily, you have a fricken problem, bub.

I am now entering year 7 and the physciall parts are taking hold, no balance, bladder wants to be on self control, forgetting my meds, needing to hold the walls to walk, back brace so I am not in pain, meds increased to help with symptoms, may even have my ow Scooter Chair soon to I can go shopping and not die in the middle of the store, because I am in pain cannot walk, people just need to disapear, sweating getting confused (some fun). I truly hate it when people tell me hang in there it will be ok. Fuck it will not be ok I am dieing. That is ok, this is just not the way i planned things.

Well till next time take care of yourselves.

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

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Update on Tests - more doctor appointments.

Well after flunking my 2 hour glucose test with colors, we now have more blood tests we are waiting on, seems Alzheimer's and Frontal Temporal Dementia are not enough to have. We alll konw i cannot spell. have lost many brain cells. I am Bi Polar, I have toooooo much body, now I have Type II Diabetes, Yeah team more fricken meds. The Sleep DR. that did my sleep tests, has me scheduled for pulmenary tests thinks I might have COPD yeah, I will live to be 112 now, thanks a lot. You will love this, I have a motorized cushion to help get my well developed body off the couch into a standing position, yes modern technology to my aid. Still working on the wife to put an elevator in but boy she is stubborn.

I get brain fades now, use to call them brain farts, but then they only lasted a few seconds, these last longer thanb I can remember having them. I was fitted for a back brace to day because I have shrunk almost to grasshopper hieght, have spinal spinousious or something along those lines. The Golden Years that is what they call this, well I am on a hunt for the person that came up with that phrase, I intened to Golden Years all over that person.

At least I have all my body parts, some do not work right, but they are still there. Have all my own teeeth, ok some have crowns, but underneath the construction it is my tooth. I am lucky i still have my sense of humor good or bad (mostly bad) and still can talk with you my family. There are many with Alzheimer's and other forms of dementia that cannot or will not speak out, and that is ok. Because all of us with this disease will be set free each in our own time from this life. I for one can hardly wait.

Well you all be good, if not just do not name it after me.

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

PS Pray for all those who are out there putting their lives on the line for all of us all over this World.

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What AAAAAAAHHHH RUUUUUSSSSHHH

Yesterday when I was younger, i wnt and had a large amount of blood taken for tests. Now I am a child of the night seeking out dinner.  I had a two hour glucose toleratnce test, WOW.  I was hungry as hell then they gave me the water to drink, filled with what tasted like sugar, but I am not sure what was in it. Well now I felt fine, they drew my blood at one hour and the world was ok, at the seceond and final hour the world was a bit different. I felt like i was as drunk as a skunk I could not walk without help. Funny how the floors and walls move by themselves. I truly was wasted have not felt like that in decades, nor do I want to again. Should get results within the week. Had to wait until today to catch you all up, yesterday just was a RUSH all day, no one wanted to leave me but everyone had to go somewhere, I ate alot and slept and by late evening I was in better shape. Today is ok, i just hurt all over, feel like i was used as a punching bag, i am big enoungh and well stuffed.

I still wonder why this disease is not working the same with me as others, it seems all the physical parts are rapidly come down, but although not fully functional, my brain seems to be somewhat alive. I do have problems doing complicated things, this is one of them, but there are times that things seem crystal clear, then they go to hell in a hand basket. Really drives me nuts. But Lynn in her loving and gentle way reminded me today that I never do anything the way I am suppose to. Marriage what a wonderful thing. Try it you may like it, I tried three times, until I was taught how to behave myself.

Stay well and take care of yourselves.  Love You All!

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

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Our Day of Rememberance.

I think the world knows what took place this day and I do not need to tell you.  What has gotten me of late are the emails telling me to Remember The Flag. To fly it today. See these are the folks that go to church on the holidays only.  I am an American, my Flag flies 365 days a year day and night (it is lit for the night). I have flown the Flag for over 20+ years on my home. This is my heritage the 200+ years of this Country. I pray for all those who put their lives on the line daily for all of us World Wide so we can live free.

Enough of the soap box, my days have been crapy lately, i am getting fitted for mobility movers so I can go out with the family. Also to help get my fat ass off the couch, you know a cushion that liftss you up gentteling and puts you in a standing position. Yes my mind still for some reason still works, but the physical parts of Alzheimrer's are rapiddlly taking over. Brain wanders a lot. For the most part I stay in, sleep at the drop of a hat, watch my fish clean their ponds, which just wears me out. Still get lost in the days though. Just like trying to post here, i sit down and just starrte at the screen and forget what the hell i am doing here. Oh well at least i still remember to breathe.

You all bne good to yourselves and stay well.

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

PS the blessing includes all of you World Wide. I Forgot Dr. Sivak has a new blog when i find the emails i will post it.

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Yes It Is ALZHEIMER'S AWARENESS MONTH!

That means that i expect all of you to make people aware of us.  If need be take an Alzheimer's suffer out and about so people can see our faces and that we are REAL people. As much as you mya thnik many people still do not know about us, the disease yes, the faces no hide them away.

I have a challenge for all of you. GET MY BOOK FREE, just pay shipping and hanlding hell it is even signed, except the digital copy. After the cost of mailing the rest goes to Alzheimer's Disease Reseaarch Foundation. I get nothing, even on the sales my royalties go to them. You reall want to help well here is an eay way. You can even give the book to friends to view and follow. Only have about 5 hard backs, about 75 siftcovers, but can sen ou a hell of alot of digital copies. Yes I am assking for you to put you money to wor.  This book cost me thousands of dollars to get published, i never expected to get rich or my money back, let alone sell more than 2 or 3 books. Well giving them away and my royallties will never pay for the printing, have sold more than 3 though. Those in other countries i still charge what is on the list, although it cost not only the shipping you pay, but double thatn. So you money does not get donated since i go in th whole on it. But the message gets out and that is what my blog and book are all about.

Remember us this month, it is Our Time To Be Known!!!!

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

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Alzheimer's and Sleep Apnea.

Yes aliens came and got me and did wierd things to me. I loved it. Wired for the night and sleep test should get results on next earth visit. My doctor says that in his practice in sleep studies that he has found that sleep apnea is a precursor to different forms of Dementia, including Alzheimer's. This i find interesting and have looked into this and their seems to be some validaty to this thought process.

To all that have bought my book thank you, I am sure the Alzheimer's Disease Research Foundation appreciates you also. All funds I receive from my book are donated to them. I will be posting the new amount shortly. I cannot thank you all enough for helping to find the cause.

I was on the Natioanal NAPA Alzheimers Comference call on the 5th i think it was. Have to say i was less than impressed.  Most callers  (practically all) just wiened about there not being financial help for them to take care of THESE PEOPLE almost all used that terem. I think i said it before if not i will say it now, we who suffer this disease are just to be put off to the side.  I am one of THESE people and deserve more thought than we are given.  Only two ladies had any brains on that call, as far as i am concerned.  They both spoke about their mothers getting Alzheimer's in their late 40's and early 50's and dieing within 5 years. They feel and I agree whole heartedly with them that the studies should not be for onlyl those 65 and older,  THEY (yes thos who know it all) have to realize that this disease starts much sooner than 65, I knew at 50 something was wrong but it took years to get any health provider to really listen. I was asked what I wanted to say off the air, you know the screening process, and I told them we need a voice and as i continued, you guess click and back to toe conference, that just depens my distaste for ALZ.org, and many of you know I do not hold them dearly at all.

Will let you all know the outcome of my alien abduction and expierements after they return on Monday to talk to me again.

God Bless & Keep You & This Country of Ours!

joe

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