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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I have not posted recently on my own life. It seems to be getting more and more out of my control. Trying to remember to do things is nearing the statem of impossibility. Yet writing seems to still work for me. I was reading an article about a new gene they have found that works on the immune system and seems that it has some affects on Alzhiemers. What gene damned if I remember. But it only helps to confirm my non medical opinion that this disease is an auto imune disease. If i find the article in my notes i keep to help me i will post it. I know they are looking at stem cells as well and they hold some possible hope.

I  am finding it more difficult to post I do not know what to say anymore. I am tired of trying to really reach out and get our voices heard. I went back in my archives, I have been doing this blog for over six years and feel like i have gotten no where. Yes many of you have told me how it helps, i do read the comments that is how i know when you yell back at me.

The fuzzieness of this world is getting very hard to get throught. being quiet and not talking seems to becomming more the way I want to be. I prefer being left alone to drift off to other places that are kinder and more pleasant than this. Notes are starting to hang on my computer desk to help me remember things again and again i forget to look at them. enough for today.

Be kind to yourselves.

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

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Where in the world is joe?

Well he is in Lake Bluff, Illinois. After a much heroing journey through California to the Nevada border and the City of Sin, Las Vegas (actually loss wages), my daughter subjected me to the towering hieghts of Colorado, not only did she try to dump me off the mountains, she had the nerve to even drive through tunnels in them. She tried to get rid of me at 10,361 feet, buy i am a tuff bugger. I hang on for dear life, terrified of hieghts. We visited a wildlife refuge in Ritchfield, Co. Had to rid my sscooter on a 35 ft high ramp to view the animals. What a neat experience that was. Only bad part it was cold and windy as all get out.
We left Colorado and went on into Utah, what a beautiful State and the color of the mountains is just outstanding. from there we went onto Nebraska, got off the freeway to find the zoo we were goinhg to see in the morning, but aliens had removed it from existence, so onto Omaha to spend the night and see the Omaha zoo.
well i will leave it there for now. I and my daughter are both extremely wornen out, but we will survive. I know i left out alot of things but the brain does not want to give them to me to write. Really gets me upset and I miss my home and wife and feel very uncomfortable at this point.

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

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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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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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Thanks to You & Health Line.

Because of your support, comments, ideas and postings and sometimes out right YELLING at me, and we know how calm a peaceful I am, not:: Health LIne has chosen this blog as one of it's top 25 for 2012, the bage is on the side. I read you else was chosen and what tickles me is that I know most of the folks and follow their blogs, and I say to them good going. Belosw is what Health Line wrote on their site:
_______________________________________________________________

Living With Alzheimer’s

Meet Joe. As funny and frank as it gets, his Living With Alzheimer’s blog is making waves. Both inspirational and incisive, his wit and laid-back approach to life somehow make it easier to grapple with the challenges brought by dementia.

Joe is no stranger to the effects of Alzheimer’s, but he faces the difficulties of the disease and makes the battle less painful – and certainly less isolating – by adding humor and casual grace into the mix. Stop by to give Joe some virtual applause for leading the way to a future of dignity, perseverance, and hope for everyone with dementia.

______________________________________________________________________

I like the casual grace part.  Thank you all, my ego is out of control right now, but what the hell I feel good this day.

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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In The Moment!

As many of you know i have also fought my disease of alcoholism.  The program i joined taguht me to live one day at a time. Taking things as they came and dealing with them without the use of my friend Jonhn Barleycorn. Now I have a disease, Alzheimer's and Frontal Temporal Dementia, which have robbed me of those memories that i was told to keep green, so I would remember my life with JB and the hell that i lived in. Those days and other memories good and bad are all becoming only words to me. They are starting not to carry the pain, joy, saddness, hapiness , etc of my past. Alzheimer's has now forced me to live in only the minute, not even the day, I can do something at 8am and by 8:30am it is gone, not even a memory only a few words exist about it. This is becomming more and more my life. Living only in the moment. I guess that is how we are reallly to live, but this is new and confussing to me. It is about 7pm here and I cannot tell you what I did an hour ago.This fuckin disease really robs you of things and it is taking more faster and faster. But I still have ½ brain cell that refuses to give up, so I can tell you of this journey at least for the moment.

Take care of 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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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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My Disease, Alzheimer's is relentless!

I hvae not written lately because I have not been able to.  To this point i have only really suffered some of the affects mentallly of the disease and the physical has gotten worse. Back brace, a scootter chair now, tremors higher dosages of meds for pain and to keep me somewhat calm. Now i ned the wrife to help me use the remote of all fricken things. I still sit at the dinner table and am not sure what I am doing, i am getting lost more and more in conversations. Hell i am starting to gorget to turn this thing on let alone post.

I keep getting sites from people tat want posted on here, but i have to read them and ask Lynn if they fit, i owe that to you my family. Some I have just forgotten this is not a sales site, with once acception MY BOOK. then the money is doneated. I am lucky these days that I can stay awake for part of the day, i just drift and that is that for hours. I am getting to know less and less where I am and actually what I am doing.
Guess it is true some of us stay mentally ok until we start to reach the end of this disease. Then all of a sudden down the hill lickety split and it is over. Not only have most of those in the documentary Memory the loss tapes left us, but a number of those is the other parts that were featured with Alzheimer's have passed since the release in 2009 I think it was. Still I hear no voices for us, only those inside my head now, but they have interesting things to say and they agree with me msot of the time, sometimes they get out of hand.

Till next time you take care of your selves.

God Bless & Keep You & This Country of Ours!
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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Dr. Joseph Sivak's New Blog

I think I promised to list this. It is on my resource link now. You can click the title of this post and go there. I must first warn you as usual my frind Dr. Sivak, does not know how to keep things short. Well he is a phsch, but a nice person. Since he has one blob I Hate Alzheimer's and of course an auother I guess he thinks he need another blog, I guess it helps him, LORD knows he needs it.

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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Alzheimer's The Relentless Predator!!!!

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

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

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

God Bless & Keep You & This Country of Ours!

joe

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

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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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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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