I am back.

A couople of weeks ago i posted that i was taking coconut oil becaues i promised a friend. Well still am and have nothing to report. It goes in and comes out. I remain the same and am getting a little bit worse each and evry day. So will continue and report. So far as i am concerned it is a ll HYPE, btu just because no hlep here so far does not mean that it might not help some people for a time.

We had the radio show on Alzheimer's Speaks Radio. I had a good time talking with Lori and feel good that someone agrees that our voices need to be heard and listened to. We may do it again some day. Will try to get link to the actual broadcast so you can hear it.  I have to say taht after the hour I was shot the rest of the day. I cannot concentrate that long and stay foccused without my head and body letting me know about it. If any of you listened I hope you enjoyed and would appreceiate hearing from you.

Now i need to fight another battle my body chringes at temps over 75, I just become worthless, more so.

For now take care of yourselves.

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

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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.

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The Passageway to my mind?

Climb aboard if you dare, the trip is wild


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

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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.

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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

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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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Me and My Friend Alzheimer's.

Of late some of you have yelled at me in emails and comments. Apparantely my fire has gone somewhat. Well you are right. I hate ths fucking disease. Alzheimer's is robbing me of who I was, i am constantly lost is a maze in my brain.  Lost in conversations, seems this is my only way of real contact. I walk like a drunken sailor, my hands and feet hurt, my body trembles, i cannot see very well anymore. I try to keep a sense of humor but it is becoming more difficult.

You all have a feeling of my thoughts towards the Alzheimer's Organization, well Mr. Robert Egge, VP of Public Policy wrote me and i am sure others to watch howdy doodies State of the Union for his push for NAPA and Alzheimer's because Obama cares deeply abouth this. WELL gues what not a word or a whisper or passing comment about it. Got another email from Egge stating disappointment but to wait for the buget and how we may shine.  These people have no clue, we with Alzheimer's are not important to this government and society at large.  I mean i get all these emails about this vitamin this herb and even coconut oil to help retartd the damange and help. Horse feathers, this shit may work for a very, very, very few for a short time 6 mos to two years and then they hit a brick wall. No more functionality, quaks go away. ALZ a cure by 2025 not on a hot day in the summer. Idiots do not even know what causes it. Loook up the studies, tey all contradict one another. I will say it agin, WE HOLD THE KEY, come to us for the answers, get the hell out of your little square boxes and see the reality.

People say Joe you are wrong, the prove it to me, show me the one person that has been cured or givn 5 to 6 more years of life because of the so called wonder drugs and herbs, etc. All my friends that have taken this crap have deterorated and even died in the 8 year time line. In 3 short years the seven of us is the Memory The Loss Tapes and 2 in the Caregiver Part of HBO Documentary The Alzheimer's Project, only TWO of us are alive today.

Yes my life sucks just like the others with this disease. I want it over, i know what still lies ahead and it ain't the golden years. Yes more people are speaking out, but they have money and prestige on careers so they are important. The people in the know say there are over 5.4 million of us in the US, According to the American Health Assitance Foundation approx. over 500,000 will join us in 2011. Well now I bet there are over7-8 million in this country in this world of mine. All those that are hidden and not talked about shoved into the darkness because this still is widely seen as mental illiness rather than the disease that it is. I know organizations are getting out the word. We do you people unite into one voice and let it be heard through out the land?

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

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Strangers in the Midst.

I have done my veyt best to fight this disease with all the mental strenght that I have had. I have allowed it to take its tolll on me physically because my mind was more important and is who anaad what I am. Well itt has marched on and I have not, it is to the point I look at those in my house and wonder who they are. I know I sould know them but I do not. I pretend to be in touch but well Mr. Alzheimer's has taken over and made him serlf at home. I rarely hear from any friends or see them, I hardly hear from any of you anylonger. There once was a time the commentss and emails were difficult to keep up with, now the emptiness of that is setting in. I know everyoe has their proble,s and life to live, but the anger that this disease hels to raise, while not really justified, it happens and and this world of mine has grown smaller, colder, darker and emptier and really not worth being here, I pray and even beg to be taken, but it is in his time. I have nothing more to offer or give and do not know why i am here.
Well i am loooosing my train of thought so take care of yourselves.

God Bless & Keep You & This Country of Ours! (Amd je Rest pf upi as We;;)
joe

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Happy Holidays are Ringing and Calling You!

short note I am sill alive, wishing you and yours a Very Merry Christmas and a Happy New Year.  We were up north in Petaluma, Ca visiting our other daughter, son in law and 4 grandkids as a xmas surprise. I am back home where I am safe. Getting turned around more and more these days. It is amazing to me how quickly one can forget something, just in seconds. This bothers me, because I always remembered things, well forgot what i wanted to say. Take cae=re of yourselves.

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

PS thanks for the post contribution Carol. I am aware of the Doctor.

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Have not written you all in awhile!

Yes i am still here, unfortunately. We now use pad on the bed, you know that song Old Man River he just keeps rolling on, well he does we and where he decideds to.Most of my momments are fuzzy now and fewer and fewer clear days. One of our family (this means all of you) recently lost there love one to Alzheimer's. I am still waiting for a picture name and birth date and date set free to post on memory page.  I guess it maybe to hard, believe she has been diagnosed with Alzheimer's or som form of dementia just recently what a bitch life can be. Well i guess it is what it is. Have read some new studies that contradict the last 100+ years of the possible cause of Alzheimers. I need to post them for you all. They kind of boost my ego what is ledft of it showing what my doctor and i felt was right that they had the wrong path basically. Problem is I sit down to do thes things and forget why I am at my computer.My days consist of very little since i do not leave the house oftern and I sit down and the next thing you know i am waking pup hours later, i cn not control it I fall asleep while talkin even. Ihave held my own for sometime nowbut the disease is doing its job and catchin me pretty fast now.

I am no longer sending emails to people who could help raise our voice and face to the public, they just do not care my feelings, i get back auto reply emails, wel when it strikes home I guess they will be some of the loudesss to yell, and never look back at the chance they had to hep raise our voices.i will be taking my book off of my site for free shortly nobody really seems to want it either, so sounds like i am on a pitty pot, i guess i am, i have fought and fought and yelled been nice even9that took courage) and still nothing so you will only hear fom now on as i cn remember to let ou know how life is.

Thank all of you for being there for me.
God Bless & Keeep You & Tis Country of Ours!
joe

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I wonder why I bother to share my Journey!

As many of you know i get rather testy at times and just fell like saying to hell with it, you do not need to know this or how I feel.  Then i get an email like the one tha follows, this is why I keep trying to give us a voice.  Parts are edited since it came to my private email so no name of way to tell who it is from. But i did write back to the person, took me a short time then longer. I asked for a pic and name and dates for my memory page, but like soooooo many of you i receive nothin back. I post the pics so people will know that these folks lived, they gave, they touch others lives and that should be celebrated. well to the email i am getting on my soap opera box. by the way this has been on my todo list for sometime, i am quick.I was asked if i filled out the facebook form, YOU BET YOUR SWEET A__, I did.

____________________________________________________________________

Hello, My name is xxxxxx, and I'm a nursing student studying in xxxxxxxxxx, xxxxxx (Canada).  I watched The Alzheimer's Project documentary, and was very touched by your story.  I know you have probably heard this from so many other people who have read your story online, or watched this same documentary, but I would like to thank you so much for contributing your own experiences and stories to helping understand and find a cure for Alzheimer's.  I was asked to write an essay for one of my courses at school on anything I wanted related to disease and disease concepts.  I chose Alzheimer's because my grandfather passed away from A.D. 10 years ago.  I never had the chance to really get to know him, since his diagnosis occurred when I was only 2 years old.  By the time I was old enough to have memories of my own, he had already progressed to the very late stages of the disease.  He only spoke Italian, which I did not, thus I had very limited communication with him.  My memories with this man consist of visiting him at the nursing home, where he stared at me with blank eyes. I fed him and walked him around, and told him stories.  When he passed away, I felt like a part of me had been ripped out of my chest, and it was difficult to accept that I had not known him better, and could do nothing about that. I appreciate hearing from someone who can recount his own experiences with this disease. I do not have personal experience with this disease, and was only an observer to something that took away someone I loved.  However, I believe that it takes great strength to explain what it feels like to go through something that takes away from the person you have grown to become.  I do not know what has happened to you or your family, or if you crosses "the line" since the documentary was filmed. I would only like to thank you, quite simply, for giving me a story that my grandfather never was able to. So thank you, truly, from the bottom of my heart.

God Bless & Keep You & This Country of Ours!

joe

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New Tests Ahead

Saw a new nerologist yesterday, she confirmed the tremor diagnosis, last one referred us to her. Also have a some type of nerve tests schedulled, she thinks there maybe nervve damage in my hands and feet. By the way the one that asked me if the last neuro was good looking, OH YES. This one is ok. Also being tested for sleep apnea, which we know I have but need new equipment means new measurements and the rest of the crap. The AD and FTD are not enough, now reach into the bag and see what else you find.

I am trying windows writer for this post not sure how it will work.

God Bless & Keep You & This Country of Ours!

joe

PS. In case I forget to post it Happy July 4th.

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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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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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Holiday Blessings!!!!

  From my family to you and yours. If you do not celebrate this time of the year, let it be known that you are still welcome in my home.

Lately I have been having more days of being in between knowing and not knowing what I am doing or where the heck I am.  It seems to be happening on a much greater scale now. I sleep a lot more now, just dose right off at the drop of an eye lid. It seems the evening hours bring back memories of my past, but not during the day I have a hard time remembering.  I guess i suffer from sundowners from the time I wake up and near the evening I have moon uppers, but I have always done things differently than other people. My in your face attituded.
Lynn is having to remind me daily now on what day and month it is, we are not counting the year, it does not matter anyhow. Have enough problem remmmebering that there are seven days in a week. I am stuck on two, Saturday and Sunday, cann't get past them.

I hope you have a great day tomorrow and all those that follow.

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

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Dr. Joseph Sivak

Well Doc is out here in gold old CA.  He is being dragged around by his wife, that woman must never feed him, hell i make up two of him, probably i am in trouble again, oh well.

Went up to see Doc at one of his book signing, had a pleassant time. For me a very tiring trip, 160 miles round trip, I am toooooo old for that stuff. It was good to see Mr. Skinny with a red face from our sun, that will teach a winter wonderland boy to mess with us.

Nice day for me, tired, woren out but got to spend time with a good friend and met some new people, who I cannot even tell you what they look like now.  But we had fun.

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

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Alzheimer's - The Miss Understanding of Many People

What follows is a statement made of Caring.com by a supposed, i use the term very loosely and with distain, 20yr Professional Caregiver.  Persons words just prove what I have said here, we are not understood and we need a voice, and not from the professionals.  My response to this very ill informed ass and Lynn's is there also.  Pleaase understadn that most of the people on Caring.com are really people who care and are trying to undeerstand and get good information not this type of pure crap and idiocracy.

"it's an illness, it's difficult but it's not ugly, horrible, demeaning, cruel.

i know that no-one i ever look after ever could remember my name, but i remember theirs. and i walk beside them. that's what caregiving is. it's not oppositional, it's walking beside who this person actually is now. it's about forgiving them for their illness."

Frena wrote the above. Well maybe if you had the disease Lady, you might just find out how ugly, horrible, deameaning, cruel and damnable it is. See I suffer from it, so do not hand me that load of crap. And i do not need yours or anyone elses forgiveness for me having this disease. Expert you are not, you do not live in this world. I and over 5 million people at present in thsi countyr of orus do.

Joseph

/this is Joe's wife, Lynn, I am surprised that he was very calm in the response to your letter. This is a disease. It is ugly and horrible. Nobody wants to loose their minds and that is what happens with Alzheimer's. I do not know of anybody that has this disease who needs to ask for forgiveness from you or anybody else. The people who have cancer which is a disease don't ask for forgiveness why should the people who have Dementia. Maybe you need to rethink your profession.

Read more: http://www.caring.com/questions/tell-parent-she-has-alzheimers#ixzz1ITq5Jin3


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

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