Hello

Yes I am still here you lucky people. Thought you might like to know that Yolanda from the documentary as of 15 minutes ago was still with us and fighting.

Things are getting screwery in my world. I know that the computer and calendar say it is 2013, but I am trying to figure out where 2011 & 2012 went. I do not remember them hardly.

We just got back from northern California visitig my daughter her hubby and 4 kids for a few days. My older daughter joined us with her 4, yess Lynn & I got a room for me to escape to. 8 grandkids and their parents is definetly more than I can handle. Extra drugs help but only to a point.

Physically things are still going the wrong way and that includes that brain cell that i have. If Lynn had not told me, I thought that I have been posting regularly, not so Mr. Brain.

I listen to all that they say is happening in research and trials as much as i can and actually i still not heard or remember if they have even come up with a definative cause for Alzheimer's.  Treatment does not seem to moved any further than a shot in the dark still. For me my world seems smaller and lonlier, my brain does not seem to really take in things around me anymore. Sleep and just stareing at the TV seem to be all that hold any interest no matter how hard I tried to pretend that I am with it. Oh well It Is What It Is.

take care until next time.

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

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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

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Hello To All

I have added new resource sites again, soon will need a website for them alone.

I went fishing behind my pond the other night. A hose ame loose on the filtering system and Mr. Fix It, went out after midnight to meet the challenge. Well all went well, connected the hose back up got the system running again, stood up turned and immediately found myself tangled up on the ground in the plants, a plant stand in the dark.  Just a badly bruised ego, some bruses scratches and aches but I am use to that, I am not stable a foot.

One thing I do to try and keep my well let us say graying matter working, is to do towels for the week on Friday, yes that is today. I got up did normal cleansing stuff, changed all the towels, put the dirty ones in the washer and behold it cleaned them. I put them in the dryer, mind you this was about 9am, it is now 7pm. My wife came home about 11am I aksed her where she had been, she gave me that look and said I told you I was going shopping. OK. I just now asked what day it was and was told Friday, immediately my wife said the towels, well you got it they were stilll in the drlyer. So I just finished folding them and putting them away, a bit behind my time.

Don't forget Tuesday to listen to the radio web show, well i guess better said i do not forget to get on it.

Life in the world of Alzheimer's never a remembering moment.

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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Our Law Makers DO NOT CARE ABOUT US!!

Dear Joseph, It's time to come together and stop Alzheimer's. America must make stopping Alzheimer's a national priority. Tell your Senators to invest in research today! Last week, a Senate panel failed to make a critical investment in Alzheimer's research – a move that ignores the suffering of the five million Americans with Alzheimer's and the millions of Baby Boomers who will get the disease in their lifetime and yearn for a medical breakthrough. You and I both know that this "business-as-usual" approach won't get us closer to stopping this disease in the coming decade. We deserve a stronger resolve from our elected representatives – the kind that we saw when Congress unanimously passed the National Alzheimer's Plan and when the Administration put forth a bold goal to prevent and treat this disease. Luckily, the budget process is just starting, and we still have a chance to make our case to the entire Senate. Don't let your Senators turn their backs on the millions of people suffering and who will suffer from Alzheimer's and other dementias: tell them we must invest more in research today. Here's what happened last week: A key Senate committee kept out a proposal to infuse $80 million for Alzheimer's research at the National Institutes of Health (NIH), refusing to provide a much-needed investment to boost Alzheimer's research. Although these Senators voted to increase modestly the funding for the National Institutes of Health (NIH), we need a committed investment in Alzheimer's research today to try to save millions of lives and trillions of dollars over the coming decades. Astonishingly, Congressional leaders refused to allocate a basic investment in Alzheimer's research. Our leaders failed us last week. As engaged and enraged advocates, we must hold them accountable. They need to know that we won't let them continue with their "business-as-usual" approach to Alzheimer's. Tell your Senators: Join the advocates, researchers, and industry leaders who have come together to stop Alzheimer's in the next decade – invest in research now. Our elected officials want to do the right thing. Many of them have been touched by this disease and want to stop it – just like you and me. But without public pressure for an expanded investment in Alzheimer's research, they'll continue to sidestep this issue and continue to offer the same insufficient response to what we know is the great public health crisis of our time. That's why I'm so grateful you'll join me in speaking out today. Thank you. Sincerely, George Vradenburg Chairman USAgainstAlzheimer's

USAgainstAlzheimer's is a community of enraged and engaged individuals who have been touched by Alzheimer's disease and are committed to the bold and attainable goal of ending Alzheimer's by 2020. We are caregivers, advocates, family members, researchers, and more, united by our frustration at a broken status quo and dedicated to mobilizing individuals to raise awareness of the human toll and fiscal crisis and to demand transformative policies to stop the disease. Like us on Facebook | Follow us on Twitter Learn more at USAgainstAlzheimers.org

email i received today. Why does this news not surprise me.

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

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Goodbye Mr. Peter Falk!

Dear Peter,
Thank you for the years of Columbo and many other movies that you so entertained us in. You will always be remember for that wonderfully prestine kept car, your Gentlemen's Q dress and your mild manner of investigating.  Yes I was a fan.  You are now free from this bastardly disease, yes I am jealous I am still awaiting my freedom.

Only wish that you and your family would have choosen to go public loud and clear and beat the drum loudly for all of us that suffer.  You could have done so much for us. I know it is hard to let people know, but our closet needs to be smashed so that folks know there are real faces and voices behind this disease.

But rest in peace now and enjoy your freedom, walk with the Lord my friend Peter.

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

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Welcome to Our World Mr. Campbell.

Yes country singer star and legend as they say GLEN CAMPBELL has joined our ranks. It was announced sometime yesterday I think, that he is in the early stages, we know that means more like the mid, since they have no idea of what early onset really is.  I for one am sorry that he has it, but on the other hand I welcome him to Our World with Joy. See he is a star a person of importance, so I am sure he will start to get a lot a press about it and talked to.  But whatreally pisses me off is why it was announced: According to the news media Mrs. Campbell and Glen wanted to go public about it, now get this, SO THAT IF HE HAS TROUBLE ON STAGE HIS FANS WILL UNDERSTAND! Sorry folks i have said it before and will say it again money is what talks period. I am a fan of his and like his music, but sorry reason is way off base and bullshit. My Opinion. Just think how the rest of us are treated and regonized and the differrent treatment he will get.


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

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I think this month will end, I hope!

Crap ass month so far, as some of you may have read my niece died a week or so ago and last week sometimme i lost my two prize KOI and then i am told I have orthostatic tremors, never say what the hellll else will happen.

Many of you know I was honrod to share the silver screen with six other lovely people in the HBO special, The Alzheimer's Project, Memory the Loss Tapes.  I considered us, although i never said anything as The Magnificant Seven.  Well Ms. Fannie Davis has passed on,I was advised today, i still need to get her pic and dates and anothers up on my Memorial Page.  I am glad to tell you that as of this afternoon Ms. Yolanda Sanmartino (the womaninthe mirror) is still kicking and doing well at Cherrywood Nursing Home. Just the two of us left, seems though we are all staying in the 8 or so year time line.

My book has made it to Europe, hopefully it will help someone over there.It humbles a pain in the ass like me that my blog, my story and my book have gotten so much attention world wide.

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

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Hi All.

Well i decided to do as my Dr. requested i went and saw a neurologist today. Met one with some brains actually, she feels that the meds they have for us are really of no value, she has yet to see them help anyone. Smart lady.  She has determined after trying to kill me that I have orthostatic tremors. The meds i am on are supposed to help these, right, we have added one to the list, we will see. However she referred me to another of her spieces  that is supposed to have this as their specialty. We went over my PET scan that i had had and finally got a real discriptive  telling of my brain, it showed considerable damage, loss or destruction if you will to both side temporal lobes and the frontal, and other abnomalities. Of course she did not know the other abs is my most wonderful sense of humor, did not have the heart to tell her.  As she did those reflect tests, it sounded like she was beating on cement on my knees. did not do well on rest of the things, but that is the way it is. Her only thoughts at this time to help me to stop shake rattle and rolling, is the possibility of DEEP BRAIN STIMULATION!!!!!! Who knows what monsters that might awake. Oh well we will see what her cohort has to say.
To all you DADS (Dads Against Diapers) you have a wonderful Fathers' Day.

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

PS. for those who followed my great KOI adventure, my two prized KOI died this week. Buggers they got out of here beforre me.

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Getting SStuck In time.

I am becomming more confused eac day. I sit here to write and just draw a complete blank. I feel that thi journey is getting rather rocky and bumpy now. When i started this blog, which seems like centuries to me, i was filled with a fire and a passion that was overwhelming me. You all know how i feel that we who suffer from Alzheimer's, Lewy Bodies, Parkinsons, Frontal Temproal Dementia, Vascular, etc. do no have a voice for us, i still feel that way, i do not want some so called expert, caregiver, reasearcher, etc. speaking for me and telling how terrrible this is and the problems and heartbreat they feel caring for us. Hell that does not put a voice or a face to us, to u yes, us no. Like it or not, WE hold the key to this disease. We have the answer, not you, we live it, why are we not asked, why are we not the experts, why is it not us that talks to the media and the big stars to tell the story? You do not know this side at all.  When it started for me it was small slices of my life taken each day, those slices have grown steadily until they are now steak size. The passion is still there to tell the story, but the fire is just a glow now. I feel like i am talking to me on my left side, i am deaf in my left ear, i feel like my blog has lost it's thunder and no longer reaches out and is heard. Yes i hear from folks once and awhile but not much anymore, I cannot begin to tell you how lonely it is inside my mind what is left now. I cannot realy even talk about things much anymore. Hell the fire and fuck the world attitude  has tempered down, I am understanding how the others that were in the hbo documentaroy felt and relate lmore to the world they became to know.
My niece died thursday, she was in her forties, i feel for her husband and three sons, but more for her mother and father, see we are to die before our children not out live them.
This is becomming way to much, there are things i want to do, but i forget them or just plain have no motivation to do them. I rarely sit by my ponds any more, my interests seem to becoming less daily about anything.
Well until i remember you are out there again take care of yourselves.

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

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Gingrich to Alzheimer’s Association Advocacy Forum attendees: "We should be able to come together to address Alzheimer’s"

May 16, 2011

Former Speaker of the House and Alzheimer’s Study Group Co-Chair Newt Gingrich addressed more than 600 advocates to begin the second day of the Alzheimer’s Association Advocacy Forum. Throughout his hour-long remarks, Gingrich encouraged advocates to speak out and share their experiences with elected officials.
"The Constitution says, 'We the people,' not 'We the legislators,'’" said Gingrich. "One of my goals here today is to assure you that you have every right and responsibility to go out and tell elected officials what is going on. You are the living embodiment of the Alzheimer’s issue."
Gingrich emphasized several themes, including the ongoing need for bipartisan support of the fight against Alzheimer’s — an issue he embraced when serving as co-chair of the non-partisan Alzheimer’s Disease Study Group (ASG) with former Nebraska Senator Bob Kerrey. 'Alzheimer’s should be a totally bipartisan issue," said Gingrich. "Alzheimer’s does not just affect Republicans or Democrats, liberals or conservatives. It affects Americans. Therefore, as Americans, we should be able to come together with no partisanship to address Alzheimer’s."
Gingrich highlighted the high financial cost of Alzheimer’s disease to Americans both now and in the future. He emphasized the need for investment in Alzheimer’s research — and the potential cost savings if methods of treatment or prevention could be realized.
"Between now and 2050, Alzheimer’s will cost the American government an estimated $20 trillion," said Gingrich. "Yet today, Alzheimer’s research is grotesquely underfunded. We need the scientific community to tell us the optimum they could invest in the next 10 to 15 years. What could they do if they had the resources they needed to save lives and save money?"
To conclude his remarks, Gingrich shared his overall optimism that the dream of a breakthrough in Alzheimer’s research and awareness is on the horizon.
"I’ve seen things change," he said. "Every generation of Americans has been allowed to dream, and every generation has seen some of their dreams come true."
Following a brief question and answer period, advocates left with much to discuss.
"Anyone who is standing up and advocating, I respect," said Suzette Armijo, an Alzheimer’s ambassador from Mesa, Ariz. "He understands the impact of this disease. He has big dreams and broad ideals when it comes to this issue. It shows us as advocates that there are people on Capitol Hill who have those feelings. It gives us hope."

	Advocates in Action
	Learn about advocates using their voices for change.
	Become an Advocate
	Join the National Alzheimer's Advocate Network.
	Sponsorship
	Connect to key leaders from the Alzheimer's Association.

			Check out our blog.

---

Alzheimer's Association Advocacy Forum 2011
www.alz.org/forum
© 2011 Alzheimer's Association | www.alz.org | All rig

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Last week or so I had my annual physical, they are just a gas. Found out that I have blood, burned off some basil cell carsanomas, weight loss program, now the doc wants me to see a neurologist, just because my balance is that of a rolly polly bottom doll. The tremors and shakes are worse, have to hold the wall to walk right, had me place one foot in front of the other, sounds like a song, heel to toes and well like the gizallel that i am i almost fell. I have yet to contact one, what are they going to tell me I am unbalanced, hell i already know that. It will mean more tests, with or without and definitive answers and then a guess as to what meds i should get for it. When i drank i had no problem with falling, i just fell and got up no big deal. Now it seems to be a problem for others, just because one minute i am up and the next flat on my ass, so what, i am safer sitting anyways.

Lynn has gone back to work, no i am not alone, because people want to be paid, can you imagine such greed. I really do not like that she is not here. But i guess it is what it is. We have discussed her executing absolute power of attorney which we made awhile ago. I know longer trust my expert financial abilities, shit cannot even balance the check book right. Once upon atime i could do it in my head, now the blasted calculator cann't even get it right. Oh well life goes on.

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

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I am honored to have added......

Finally Cousin Cliff from the HBO series is now on In Memory of Page.  He was born James Clifton Holman. For many years he entertained thousands of children on his TV show. It is only fitting that his final momments were caught on film for the screen. Welcome Cliff.


God Bless
joe

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To Our Heros!!!!

On this day here in the USA we pay National Tribute to our Fallen Military Heroes that have over the centuries an at present give Their All to keep us Free.  We also pay tribute to those who are still fighting for freedom. I also celebrate all those from all Countries that have and are dieing for their Countries freedom. Remember also many of them died to help keep us free as well as our troops did for them.

God Bless & Keep You & This Country of Ours (Yours as Well)!!!!!
joe

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Alzheimer's, The Blessings Of!!!!

I can hear you all now, joe is going on the rampage with this one. Well you are wrong. You all know the crap side and so do I, but you do not know the, morbid as it sounds, the blessings that come with this death sentence.
1. You know you are not nuts.
2. Death is no longer a fear.
3. You get to forget your resentments.
4. You no longer hate someone, because you forget them.
5. You meet new people daily.
6. You talk to stangers more frequently.
7. You do not have to be stylish in your dressing any longer.
8. You forget to tell people to fuck themselves, hence you may not swear as often.
9. If you smoke you make forget to or where you placed the things, spend all day looking for them and go to bed saying the hell with it, and never having smoked.
10. Nine could work for drinking.
11. Wake up each morning with a new woman or man in your bed, This One We All Like, even you.
12. Forget you annoying relatives and neighbors.
13. Forget to turn on the TV, but yet you watch it.
14. Have conversations with people who know what you are saying, but no one else can see them.
15. Forget you hate vegetables and even try them now.
16. Get to have some one else change your clothes, what fun that coould be.
17. Take a bath when you damned well feel like or think you may need one.
18. Won't discuss the toliet training that you forgot, you caregivers might not find that so enjoyable.
19. Your new eating habits that help you loose wieght, no 20.00 for 20lbs., you just forget what food is for.
20. One day the World and all of its' Bullshit suddenly stop for you.

See we have to look at the bright side once and awhile. So I am sick, I am allowed, brain confussion, cannot seem to find the darn thing.  Have fun, be good to yourselves.

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

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Alzheimer's Folk Do Not Want To Talk About It!!!!

This is actuaaly about denial this post. I read on caregiver sites, other blogs and comments on mine, "how do I get mom or dad to admit they have Alzheimer's, they are in denial".

Well my point of view, you just don't. What is the big deal if they say Yes dam it I have Alzheimer's. Does that validate YOU in some way. Frick they know something is wrong, wake up. Your job as their caregiver is TO BE THEIR FOR THEM, not to make them agree to having Alzheimer's. We know we have a problem and it will get worse.

Yes I am yelling at you. Imagine yourself being handed a DEATH SENTENCE, that is what Alzheimer's is. Would You go around skipping down the street saying oh goody I have Alzheimer's; or do you think you just might keep your mouth shut and go about your business the best you could? That is what I choose to do and many folks that I know that have the disease have choosen to do. But I tell you on this blog what is happening to me so you get some insight into our world of frustration, terror and brain fog. I do not know how everyone feels, but i do not consider myself any more important than anyone else with this disease, we walk together.

Forget whether your patient, loved one, etc. accepts or talks about having Alzheimer's. They have it, is not that enough said? Help them do not hoover and smother them, be there and not in their face. As you can tell this denial shit getss to me, because I wonder who really is in denial, the person with the disease or the person saying that one is in denial.

Enough of my ranting.

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

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In Case You Have Not Noticed!!!!

I am giving my book away, for a limited time, FREE, you just have to pay shipping and handling. Also part of the s&h will be going to the Alzheimer's Disease Research Fnd.   I never wrote the book to get rich only to raise awareness for my side of the fence.  If giving the book away helps achieve that great, and along the way you will be helping the ADRF and it's work, plus raising awareness.


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

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Food for Thought

As you may know i do not have great faith in the medical field, especially with being forth comming. So in my latest of brain enhanced theories, besides AD being an auto immune caused problem. I feeel that many that are in so called health care facilities, supposedly suffering from one form of dementia or another, ARE NOT. Yes that is what I said, i have over the years read the various studies, from stopping dementia to curing it and everything in between, poultry feathers i say.  I believe that many in these facilities are victims of the stupidity of doctors and the greed that they and the pharmacuetical companies have.  It is called OVER MEDICATION, we give a drug for a real disease, it causes side effects, so a different one for the side effects and it causes, you guessed side effects, so what do we do, give another drug, until the poor bastard is taking so many drugs it is no wonder that they become mentally unaware, physically impared, not to say just out right dead.

I am not saying DEMENTIA does not exist. I am just saying before a diag of such is accepted it may be well to check the meds one is on and see their side effects and maybe under professional care, start weening them from the drugs and see what takes place.

Ok joe you say,but think hard about this one. A pill for this and that and one to take care of those pills, plus over the counter meds these folks maybe taking, what are the real affects. Plus most drugs are prescribed by a test method on most younger to middle aged peoples and their respective optimal wieght and hieght. Not on a 65 yr old person out of shape with adjusting for age, wieght and other meds and factors taken in.

I have it, proven by Brain tests, of course death will be the ultimate diag for the AD, not the FTD. Also on more than one occasion in ture medical language and diag after being tested I have been informed that "Joe, there is nothing up there", so there you have it.

What i amtrying to say is always wiegh what you are told check it out, get a 2nd opinion and research any drug prescribed and find out if it has reactions with others.

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

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Where is this day going?

I am sitting here trying to figure outt wher this day has gone so far and what did I do. I know I at least got up because I am tpying this. Things are getting more and more confusing and I cannot be sure of anything that I may do. I guess this is one of those what the hell posts, because I am not even sure why i am doing this. Plain fact my brain and i seem to be going more and more in diffferent directions. Maybe time has come for Lynn to post for me. I just tell her best I dna ow i am feeling and let her put it into words. At least the speeeling will be much better.
I am starting to feeel more and more detached from everyone and everything. Good old AD & FTD are hard at workand doing what they do best. Well later i am completely at a loss right now.

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

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Yesterday i had blood drawn for tests for my physical next week. Then I spent the rest of the morning with my phsycologist . It was interesting, i have seen mim for nearly 7 years or so with breaks. We were talingi about the so called new advances in Alzheimer's and the new guide lines for diag. and treating. Funny part about it is as we talked he remembered I had said most of this years agao. And it has been posted on this blog in various forms over the years. I dound that all to be interesting that these so called experts only needed to talk to me or someone like me with the disease to get these startling new ideas and would have cost nothing. But what the fuck do we know, we are sick and mindless. But it does add credability to sites like mine, that we know what they cannot figure out.
I had another doctor write me recently, and the gist of what he said as I could understand it and questioning him on what he said is that he basically in simple terms agrees about the profession, and pharma companies, they all have their heads up their collettive asses and only promote drugs for money sake, because no matter how you want to cut it, the drugs DO NOT WORK! It is still about 8 years from diag. to the end drugs or no drugs. Our paper here had an article today about a former mayor, whose wife was diag. 7 years ago and just died. I know we hear about the 15 to 20 year sufferers, but they only exist because someone was smart enough to notice it in its infancy stages. The ten or so years of true EOA which most pros call DDSS, my term for Distraticed, Depressed, Stress, Syndrome.
I have my moments, what is difficult is getting what is in my brain cell, down to my fingers and then getting them to type what it is that is their. I have to do it quickly or if I think to long ( 5-6  seconds) it is gone and never gets said.
I know from some mail i got i insulted the Alz.org, but i want you to know that was intentional. Yes they help caregivers, they have done shit for me and I have contacted them many times. Even my local San Diego Chapter, who I gave copies of my book to for their lending library. And they wanted me to help with things and with the State, YES YES YES i said. Their ultimate answer and reuests have been complete silence, and I have heard this from others, including some Drs. I know their are good people working for them and my attack if you will is not on them, but what seems to be an organizzational lax of understanding the sufferer. Oh yes they know it is not pretty, but it does not seem that they have the first idea of the real terror in our minds and the loneliness and the difficulty we have telling anyone, because we know you do not know or understand this hell, you are not in it.
Time to shut up, i am getting to angry and feel like telling most everyone out there to fuck off, but we are family and I need you and I think you need me also while I can spout off and make some sense.

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

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