Faces and Names don't always match.

The other day i do not remember when it was my younest daughter and i were siting on the couch talking and I looked at her and could not remember her name. Which is Kathryn. I tried to say it but i just was not able to. Finally it came out and she just looked at me and said you forgot my name, tried to cover it up, but she had me dead to rites. We did laugh about it, but it bothers me. Living with us she understands more about what is happening then the other kids and she just  I think the word is placates me, and says don't worry dad it is ok.

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

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I'm Back!

Back from where who the heck knows.  By the way if you want to cotact me or Lynn directly just email us at:
joynn1@cox.net  make sure you put in the subject line eitehr my name or Lynn's so the right person gets it.

If  any of you out ther suffer from this damn disease and have nowhere to post what you want to say, email me with a post and if it meets our extreeeeemly high standards I will send you back an invite to be a guess bloggger on this site.  Rules: simply total honesty, correct speling not an option, be ready to catch flack from rest of this World family if you get out of line; if your postings are inappropriate I will remove your privilidges.

Posts must relate to any form of DEMENTIA or your direct care of one with Dementia.

my computer is now bakc and running, maybe i will be to.

God Bless,
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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From Sunrise Senior Living

an email i received thought you might be interested.

Message = Hi Joe,

Sunrise Senior Living has just published a new guide for Alzheimer's caregivers.  You can access/link to the Guide here: http://www.sunriseseniorliving.com/caregiverguide/

The Guide is part of a full slate of programming around World Alzheimer's Day.  On Wednesday, Sunrise is inviting caregivers to attend free information sessions at its communities across the country.  Here is a link to more info: http://www.sunriseseniorliving.com/ResourcesToRemember.aspx

Please let me know if you have any questions.

Many thanks,
Lanna Nguyen
for Sunrise Senior Living
(202) 775-0200

--------------------------------------------
Visit the new Sunrise Memory Care Blog:
http://www.sunriseseniorliving.com/MemoryCareBlog

God Bless & Keep You & This Country of Ours!

joe

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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, Sleep Apnea, Early Onset Alzheimer's and Medications!

Yes I have Alzheimer's and Sleep Apnea seems to go with it. I was first diagnosed back in the mid 1990s, remember the old times. Had my test again, well now what took place, well went for my findingss or whatever want to call them, appiontment was for 10:30AM as usual had the normal 15 min. delay, that turned to 30 mins. at whch time the wifey got involved as to what was going on, well 45 min after my appt. time taken back had blood pressure, which was rissing, taken and my wieght. Seated right in front of the Dr. office and told it would be about 2 mins. and I was next. Well, he comes out and takes in three people who needed an interpeter ahead on me.  Now you all know the high esteeenm i hold the medical field in, so you can guess what took place, the Dr. was told directly what I thought and so was his entire staff and all the patients heard, you know i hold nothing back. Well with contrite voice and approach the ass called me later in the day and was so apppologitic that I wanted to vomit. I still gave him no respect or quarter. Apparently my SA is not very bad, so time will tell on the front.

Early Onset Alzheimer's diagnosis is a MYTH it does not exist people. Only if they tell you 10 or so years before. One of our family members (part of this family on the blog), husband was diagnosed with EOA from reading her blog and things it seems to me to be about a year ago.  He is now in mid stage, gee from EOA to mid stage in 1 to 2 years no way. We are generally diagnosed in mid stage, because the HealthCare providers do not want to TAG us as one of THOSE people. But if you have cancer, aids, heart disease, herpes, well yeah we can tell you normal folks get those diseases.What I am trying to say in the stage play here, is we are still not to be talked about and I see and hear it all the time.  Everything is to help the caregiver, Time To Listen To Us, we hold the key let us give it to you. Are we not people, do we not cry, do we not feel pain, do we not feel the frustrations of loosing our memories and control over our bodies? Bet your sweet ass we do and are.

I take 80mg of Fluoxetine (prozac) a day to handle my mood shifts and anger, also take 20mg of Crestor to manage my cholesterol ( diet and exercise has never worked, liver is to efficient at producing this little bugger), 300mg of Gambapentin (Neroutin) to manage moods, seizures and the neropathy that I have so I can walk and feel in my hands, take .5mg of Cholozapam (Kolonipin) twice daily to help with my St. Vidas Dance, the tremors and shakes probably will be increased because it helps with sleep temmors and REM Behavoral Disorder.

None of the so called slow the process drugs, sorry tried no help and most people I know have gotten no real benefit from them. Have hadt tow reallly top neurologists say no to them because they have not seen them help anyone in their practices. You know the drugs, Aricept, Namenda, Exerol and the rest. I have written I believe in past posts about these drugs.

Well this is a lot for me, I feel like I am preaching, probably I am and it is to the choir, no one that counts is listening, you all know this is not directed at you.

God Bless & Keep You & This Country 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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REM Behavioral Disorder and Dementia.

Why this topic? Well today I found out that I suffer from REM Behavioral Disorder and have for sometime, years. I am undergoing sleep study this Wednesday to find out how far it has progressed along with my sleep apnea and other stuff.  Found out today that this disorder has long been shown to be a precusor to dementia. My sleep Dr. is excited to make the study because it is not often he gets to deal with this.

What is it? Well apparently when i enter the REM stage of sleep i do a lot of twitching, jerking and as it progresses I get violent in my sleep. Poor Lynn has been the bearer of this action. However she has most of the time feels things starting and gets to me before, yes I start beating on anything in the bed including her. This is apparently what also helped me out of bed and on to the floor. So if you know anyone with this disorder maybe they should start talking now to a medical professional that has ears and maybe able to save them some rotten years ahead.

Alzheimer's and Frontal Temporal Dementia, have for runners apparently not just shrinkage, amaloyids and stroke or damage.  Have not seen any studies that I have found that show much about sleep disorders and dementia, really. They have touched on it, but I am not sure they have done any real serious in depth looking at the connection. They probably fall asleep anyway. 

Also found out today that my stature in life has shortened by 2¼", yes i have shrunk from a towering 5'83/4" to a colosal 5' 6½" inches. This i attribute to my kids they made me old, grey, short and fat. Till next time take care.

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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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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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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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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Picks or Frontal Lobe Dementia (They Are The Same)

I was reading my friend Mary's blog today, it is on the right side. She lives in Canada and we have chatted back and forth for quiet awhile. She posted a site A Picture of Picks Disease from the inside out. 

I am posting the link here also.  You see I have AD and FTD. The article may help you understand me better, since it is writtten by a Dr. (you know my normal thoughts here) that suffers from FTD and explains things very well.  His feelings on the publics knowledge do not difffer from mine. But he is kinder than I, surlely he speaks the truth and feelings as he understands them, i just happen to be more direct and believe in the raw basics they speak of the horrors more directly.

I have read a new study that shows that the brain starts its' shrinking journey a full 10 years before the first diagnosis of AD is made.  Thank You oh Great One's. You have once again proven your swiftness of understanding and well deserved Paper Hanging Degrees.  I have said on this blog as I have been reminded that I knew things were wrong when I turned 50 tem yrs before my first diag. in 2004 by my pshycologist whose father died from AD.  The FTD and AD confirmed by a pet scan 2006/2007 do not remember. So Early Onset is not Early Onset but as i have thought more mid stage. These assholes do not talk to us they are to fricken smart.  Sme food for thought in reading the various ground breaking studies of the cause and cure and preventions of this disease, I have come to my own earth shattering and astounding cause for ALZHEIMER'S & OTHER DEMENTIA'S, they are Auto Immune Diseases, all the studies point that way since it is enzymes and the such causing plaque build ups and other nasties, and from the med shows and the experts these things are auto immune, beta amaloyid protiens, formed when enzymes attack white corpusle cells if I have my thinking cap on. Since I believe that Dementia in and of itself is a full body assault to my lowly brain poser of one cell, it spells auto immune. See I consuletd with DR. HOUSE and his whiteboard and he agrees. Trust me I am not making fun, i believe that this is where it lies.

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

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One of Our Family Needs Your Help

I got the following comment the other day, you all need to help this lady. You know me, it would be so what the hell do you think he is going through, toughen up and deal with it he has to 24/7. But I know you all will give her the guidance and advice she needs on her side of the fence.  Many of you probably know I am 66 and the old gal i am married to is a robust 50. So i hope she also replies to this. Enough of my ranting and carrying on. Help this lady!
_______________________________________________________________________________
Anonymous has left a new comment on your post "When is it time?":

Hello all

My husband was diagnosed 4 years ago with mild memory loss. We were doing fine until 6 months ago. all of a sudden he started packing boxes and telling me he has to go home. He was home. It continued to go down hill from there. So fast. That is what is so confusing to me. He is in a nursing facility now. The doctors advised me to do this. The big question of the day is, Do I feel guilty. The big answer is yes. we had our 35th wedding anniversary in January 2011. He was there and I was at home. This is so difficult. I look for a support group regarding early onset Alzheimer but there is no group for spouses. He just turned 69 years old. I'm much younger and very empty.
______________________________________________________________________________
This is a good family here and I am glad she found us.

God Bless & Keep You & This Country of Ours!

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Digital Copy of My Book

you can now purchase from my site the digital copy of my book.  Cost $8.00 usd for all.  you will neeed to download :Adobe Digital Essentials this is a free program for viewing digital Ebooks, much like Adobe Reader for pdf files.  All you need to do is click on the link and follow instructions.  Once you purchase my book I will email you a copy of it.  In case you have prooblems downloading the Adobe program I will also enclose the link with the book.  The digital copies are not autographed.

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

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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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As you may know I have ben trynig to kep track of those who were in the HBO Documentary. Last time I had to notify of 4 of the 7 of us had passed. I still have no information on Fannie Davis, but I spoke to the care facility today that Yolanda Sanmartino was at and she is still with us physically and doing ok.

http://www.hbo.com/alzheimers/memory-loss-tapes.html

The above link will take you to all parts of the documentary. You can watch them on line if you have not seen them. Link will also become a permanent link on my blog.

I am will continue while I can to keeep you updated. Take care and be good to yourselves.

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