My Friends.

today has been a rather calm day for me. after the last few weeks it is much welcomed. i still do not sort things out well, but i am a bit more aware i think this day. i think i have acquired sleep life away syndrome. I get up about 8 am do my morning stuff sit down and it is noon or one oclock already.  Next I know it is 4 or 5 diner time. Yes i sleep about 7 hours at night, but tht does not seem to matter. I have sat down a number of times this week to post, but as usual i just go dormant and cannot remember what i want to say or why i am at th computer. Lynn handles the check book now. I have to contact the DMV license renewal time. Although i do not drive anylonger, they will probably not renew my license, test and i will not get along. Just another part of one's life taken away by this fricken pain in the ass disease.  it is getting harder to keep some sense of humor and my mouth shut. It is what it is.

till next time take care of yourselves.

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

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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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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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To Good Not To Pass On.

Subject: The truth about Dorothy

Is 70 years old.   Today, if  Dorothy were to encounter Men  with no brains, no hearts,  and nocourage  -   She wouldn't be in Oz -     She'd  be in Congress.

From a friend made my day, hope you find the humor.

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

 

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Alzheimer’s Can Kick Your Ass!!!

Today has not ben good so far. Have beeen trying to write this for sometime.  My brain is somewher but not with me. My body feels like a train hit it and my head hurts like hell. It took me 3 fricken hours to dry the towels, see I was air fluffing them, not drying. Eyes do not see things right either. We will be doing the videos but probably will have someone edit out what Lynn does not want shown, me I give a fuck. But she rules the roost.

I was talking with Lyn the other day and told her that it is feeling like we are now in diffferent worlds.  I see her and others, but I cannot feel them or their presence in mly world. I feel like I am seperating away from things. Then suddenly everthing crashes back together and hell I do not know what is going on. All I think I know is that things are getting squirelly in this world of mine. Reaching out does not work I cannot get beyond the barrier anymore, time is becoming my enemy with things.

Enough I hurt tooooo much right now.

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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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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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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What price Alzheimer's

Many of you have lost loved ones to this disease, mothers, fathers, grandparents, friends, siblings and this list goes on. Mother's Day is tomorrow and to all Mother's long gone, still with us and to be, I wish you the happiest of times.

This is only one cost of the Disease, the losss of a loved one. Just think how we feel as we loose the loved one that we care about so greatly, ourself. Sounds selfish, but it is a reality. The other day to me it was just yesterday, because there is only today and yesterday for me, I walked into the "OFFICE", doe not everyone have to have one in their howse. A bedroom with a comuter in it, WOW. Anyway i walked in and the next i knew my wife was in helping me get up off the floor. See this 700 pound pigeon, does not remember how to fly to well. I bet i wennt down with grace, style and diginity and a thud. problem is not remembering what took place, one minute i am standing the next on the floor like a beached whale. I know this is only part of the disease and what is to come, but it is taking longer to get up and the aches take longe to leave and some now stay, they found a home. Good thing I drank heavily in my twenties, I learned how to fall and get back up. So I guess we are born we grow and start to return to our original days.
The more i look at this disease the more I feel it is auto immune in nature. I notice our Alzheimer's Organization here in the states touts the stars who have parents or sweethearts who have parents with the disease as being such brave soles and all the work they do for Alzheimer's. I say stick it up your ass you do nothing for us. At least Canada has speakers at meetings with the disease so that the true story comes out. I know I have a couple of friends up their speading the word at AD meetings by the Alzheimers Assoc. of Canada. Kudos to you folks.  Here forget it. See personal experience has shown me the nature of their commitmennt.  The San Diego Chapter, visited me the wife would remember when, it was shortly after the Walk here in Oceanside, I think. They met to discuss my book, the lady was very nice as i remember and felt that my story needed to be told and by me and that i would be of greqat service, i was even asked if i would be willing to speak and help, well I said yes. gave them books for their lending library. They would be in touch I was told, the bullshit put off statement. Well they went to the state capital for getting things done, i was asked originally if I would go, yes, however time came and pass and so did their silence. I get emails to help support them. I think not, you can have as much support from me as you have given me.  The Alzheimer's Disease Reasearch Foundation gets my help they at least are doing things.
Had to get this off my chest. It has been burning my ass for a long time now. Many good people work and volunteer for the Alz.org,, but the whole does not even come close to equalling the parts.
I have noticed lately that ai seem to be going away, that is the best way i can say it, seems like me and that around me are starting to part ways more and more each day.
I am rambling on so I will say so long for the time being.

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

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Alzheimer's = Millions Survivors = ZERO

Yep that is the score. Now what do you want to do about it. NO CAUSE - OF COURSE NO CURE - & MEDS THAT DO NOT DO MUCH.  Yes now they say it starts, the brain shrinking, 10 years before first diagnosis. New three stages, shrinkage, mild to moderate loss and final stages. These brilliant morons, sorry that is what they are, have confirmed everything I told my physchologist over 6 years agao. What these folks call Early Onset is not, it is mid stage.

I have been fighting the fight for years now, daily. I have lost on a daily basis. What is it that people do not understand? This Disease KILLS.............  When does the truth get told over the media, we are not mentally ill people we suffer from a deadly disease, get with it people.

I have grown tired of the battle and tired of trying to help the word get spread and fighting my own decline, I no longer have the physical or mental or emotiooonal strength or will to continue to fight. So no more from me. only that which I can remmeber happening each day and coming forth and trying to tell you, no more fight no more argumment, my time to rest has come, it is time for others to pick it up. People only want to hear from those that are nicey nice, well you all know me simple and raw to the point.

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

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New Findings - Interesting Support The Cause!!!

Bulletin from the cause: Support Alzheimer's Research Go to Cause Posted By: Fisher Center To: Members in Support Alzheimer's Research Significant Finding in Nine Months by Fisher Scientists Scientists at the Fisher Center for Alzheimer's Disease Research at The Rockefeller University, led by Paul Greengard, Ph.D., and Jennifer Warner-Schmidt, Ph.D., have shown that anti-inflammatory drugs, which include ibuprofen, aspirin and naproxen, reduce the effectiveness of the most widely used class of antidepressant medications, theselective serotonin reuptake inhibitors, or SSRIs, taken for depression and obsessive-compulsive disorder and anxiety disorders. This surprising discovery, published online this week in the Proceedings of the National Academy of Sciences, may explain why so many depressed patients taking SSRIs do not respond to antidepressant treatment and suggests that this lack of effectiveness may be preventable. The study may be especially significant in the case of Alzheimer's disease. Such patients commonly suffer from depression and unless this can be treated successfully, the course of the illness is likely to be more severe. Depression in the elderly is also a risk factor for developing Alzheimer's disease and researchers have suggested that treating depression in the elderly might reduce the risk of developing the disease. LEARN MORE: http://www.alzinfo.org/04/articles/fisher-center-scientists-show-anti-inflammatory-drugs-reduce-effectiveness-ssri-antidepressants Call to Action Support the cause. Be counted: I Read This

God Bless & Keep You & This Country of Ours!!
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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My Friend Carol has asked for Armagedon.

Yes Carol you have asked me to bring the wrath of the Lord on us. Me making a video of me dancing, is like asking 40 Blue Whales to come ashore and dance, it would shake the ground and mountains of the world, then you said about maybe one of me singing.  Well i do not know if you ever herd a bull mose bellow, I am far worse, cows calve, horses fold, birds take flight and forest fall down. And gardening, my idea is dig a hole put the pott with the plant in the ground, if the grass or plants get brown spray paint them with green paint. I think he who made us all would not allow such a plaque on his world done by one like me, that is his job.  I have tried to play him in my life, got no where but arrested, told to go away, drunk and strung out for years, toooooo many battle scars to do that anymore, so my friend no way.

I have thought about making a video for You Tube, but as a suffer of this disease to verbaly tell folks about this world that i and many others live in. Not the crud from the experts and sorry caregivers, who really do not know who we are, but love us enough to help. People need to really know what it truly is like for us that suffer. Have tried with my blog and my book and well, my ego is now in the way and it has gotten kikced in the ass.  Maybe the video might help as my time grows shorter.

I know I sound damn good today, but I am in a rotten mood, spent two days in court testifing  in a fraud case that cost my son 56000 investment. Good thing the judge wa s a compassionate and understanding person, because you all know how I can say things and how blunt i get. I tired as hell no sleep, hours in the court room and me basically the only witness for two days, traveling to court being out with people which just drives me squirerler than I already am. Meds have not helped much but I am here today and I guess that is what counts. Confused as hell, not really knowing what I feel or want or much of who I am anymore.

I thank all of you that responded to Lynns last post, it shows what a family we are becomming and she really was touched. But why not she is with me, so you know she is sick to. But I do thank you, because what you did and said is why this blog is here and all are welcomed.

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

PS> prayer for those who fight to keep us all around the world free, and for those suffering in Japan, they did not ask for this, no more than the folks in New Orleans asked for Katrina.

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Brain Decay

Over the last few days both Lynn and i have ntice a dectease in my attention and ability to relate. am developing new language, but poor Lynn she understansd what I am trying to say, what does that tell you.

Also I referred to Alan Rogers,  well good memory joe his name is Alan Arnette, sorry big guy and he is.

Have a new guy Ken with us he has Lewy Body Dementia, maybe we can get him to blog here as well as his own, to help learn about his dementia. After all that is what this site is about.

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

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Posting On This Blog

Only one rule to those invited to post, must be on dementia any type and you are free to be explicit. If a caregiver your thoughts, what you have learned, what you see, etc. One always has something to say even if it is I cannnot take this crap anymore.

Please check out the In Memory Of page udates. If you want a love one added, use email form on bottom, or email me at jolynn1@cox.net  I need name, birth year, date set free and a picture.

This is our home please join in. If you would like to be able to post here using above guidlines let me know? Remember abuse the priviledge and u will be cut off and so will your post. You know language is not always a criteria here, but honesty is.

I have had the honor of speakinnng to Alan Rodgers, the nut, who is climbing the 7 highest summits on each connntinent for Alzheimer's Awareness. I call him a nut because he climbs these mountains, me I fall down them. He is going to keep us in the looop. He has reached over 20 million people already through the presss coverage and talk shows he has been on.  Alzheimer's took his mother about 1½ yrs. ago, so this is his mission and is takking us with him.  May God go with you Alan.

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

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Early Onset Alzheimers

Yesterday my physcollogsit and I discussed this topic. Generally from time of this diagnosis till time to leave is about 8 years. Check the people that have died from the HBO special and the timeline and that of Sarge Schriver diag. in 2003 just died 2011. The list goes on.

We got to talking about the time period and EOA. My opinion only is that what is called EOA is not, it is more towards the middle stages. My reasoning, which is questoinable, is most of us are told when we start to notice things going wrong, oh it is STRESS, you are just DEPRESSED, you are DISTRACTED and you know the other bullshit. It generally is years before anyone really starts to listen and connnect the dots and finally does reall testing and oh well now you have EOA. I say no, you had EOA possibly for as much as 10 years befoer those white coats figured it out. Of course you had no idea, even though you kept on saying no that is not the problem this is. But of course you did not read page 89 of the med journal of AD and the box you have to fit in to have it.

Yes we both disagreed with each other at the beginning, but since his dad died from AD, he thought back and started to understand what I was trying to say, just maybe the real deal. He is a good man, shit he has put up with me for almost 6 years, so who is the sicker one! He asked me when I first noticed things going goofin and best I could remember I was around fifty, i could not multitask without notes anymore or even handle the number of tasks that I could and it got worse and worse. Of course i had SDD syndrome, right.

What I am trying to say while I am still somwhat together is, if you feel there are reall problems going on in your head, do not allow your doctor to just push it off as the SDD syndrome. You have to fight for you period.

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Some GrandParent Humor Today

I received the following email from my mother-in-law. So I thought rather than being a pain in the ass today, that comes later, we would have a little humor, at least i found it so.

Have you ever  wondered what the difference is between Grandmothers  and
Grandfathers? 

Well, here it is: There was this loving  grandfather who always made a special
effort to spend time with his son's  family on weekends. Every Saturday morning
he would take his 7-year-old granddaughter out for a drive in the car for some
quality time -- just  him and his granddaughter. 

One particular Saturday, however, he had a  bad cold and really didn't feel like
being up at all. He knew his  granddaughter always looked forward to their
drives and would be  disappointed.  Luckily, his wife came to the rescue and
said that she  would take their granddaughter for the drive. When they returned,
the  little girl anxiously ran upstairs to see her grandfather who was still in
bed. "Well, did you enjoy your ride with grandma?" he asked. "Oh, yes,  PapPap,
it was really wonderful.  We didn't see a single  asshole, blind bastard,
dipshit or son of a bitch anywhere we  went!" 



Almost brings a tear to your eye, doesn't  it?


God Bless & Keep You & This Country of Ours!!!!!
joe
PS> God love grandpa's to.

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My Book

If you wish to see sites it can be purchased at both written and electronic go to:

http://LivingWithAlzhiemers.wordpress.com

You can also leave a review of the book should you have purchased it.

God Bless,
Joe

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