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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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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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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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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Compensation for Missing Brain Cells

I do think that my husband with his Vascular Dementia and Alzheimer's compensates well. I do think that Joe with his Frontal Lobe Dementia and Alzheimer's compensates well. Joe blogs and testifies in court.  Both men are fighting. They have got to be using brain cells from somewhere. I would like to see the researchers follow both men around.
A new article from the Alzheimer's Weekly hints at compensation. Use healthy brain cells to compensate, it reads here.

My husband puts up signs so he can help determine which bin is for newspapers and which is for glass and plastic. He takes notes on what the day holds and checks with the calendar. He thinks ahead about our camping and how the camping electrical circuits can be fixed. He recalls good times with Jake and Sally and wants to know when we will see them again. "When are we going to Disney", he wants to know.

God bless our sweethearts!

Carol

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Just added a link

just posted a post with a link to Ken's last post. The stinker uses voice software.  He suffers from Lewy Body and has recently joined our family here. Please visit him and say howdy and make him welcomed.

I have been busy the last few dayss or weeks not sure which it is and not really sure what i have been doing. I look at thiss new beast of humanity that I have, and wonder why, i cannt spell or remember any better because of it. But it has a 23" screeen which i cannot see without my glasses either, so what the frick. Today has slipped away from me again.i just do not know what to tell you except that things are not bettter and are not going to be. At present nothing seeems to be working out right, but then again i am not sure what is right or not anymore. I know i am becomming very indifferent, whoa a big word there, to most everoything and every one around me and basically do not care.  Dr. Joe Sivack i think wrote on his blog or i heard it somwhere who the hell knows that we in this world i live in really become who or what we really are, if that be true i hope it ends soon. because i do not like who i am now, by the way i am not sure of who that is any how.

i would tell you who these two are but their names escape me. not really it is my wonderful wife Lynn and that bastard she now hangs around with. The woman just will not listen to anyone. Taken ????????

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

joe

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Click on This Title

This post is from the Alz.org, forum.

click the title for the post.

Joe

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Thanks To You All

This is to say thank you. My book has gone to print today and should be available at least electronically in 48 hours we hope.  It is Titled:
                                           Living with Alzhiemers'
                                          (A Conversation If You Will)

So titled because you all have played a part in it. Whether is sells 1 copy or not is not what counts to me, the fact that it has beens something I wanted to do and Thanks to All of You, it has come about. When I get the location for you to look and decide I will post it, quickly if I remember. Lynn will probably beat me until I do.

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

PS> Thanks Dr. Sivak for your support. To the young lady from Paris who wrote me this morning, I do not know how many visitors from France have been from Paris. I send to you & your fellow country men a big Hug from us here in the USA.

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Today I am not clear ast to what i want to say. It is becoming difficult for me to keeep my thoughts in order, as if they ever were. I am becoming more distant from my family, I feel very trapped by everything. We went to the Birch Aquarium, I think it is called, in San Diego on Friday, it was fun, but to tell the truth I was not really part of being there, although the lady at the sharks was interesting, but you know my wife, she would not let me bring her home. I am having more diffficulties with talking to, seems to come out sideways, good thing those around me have a clue to what I am saying, because I don't. I have been watching and noticing all the things now that they say will slow down your getting AD and all the things that cause it. It just leads me to believe even more so that these people are morons and have no idea what they are doing. In most cases giving people false hope and bullshit answers. Kind of sounds like are President and Congress. What the hell most of them went to the same schools anyhow. Well I am rambling, getting good at this. Also have changed the site again and probably will still more, gives me something to do and screw up at the same time. Well bye for now.

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

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The Gift of Alhziemer's!

Yes I know what gift? You need to have the disease to understand. See because of this blasted thing, I learned something today that I did not know, even with it starring me right in the kisser. I was reading over some emails I got because of the HBO Documenttary.

It brought people I knew from over 50 years ago back into my life. Of course they had to tell me how, when, why, etc., before the old noodle could grasp it. This may get long and run in circles, but what the hell, if I can run in them so can you.

You see I wanted most of all to be a good husband, lover, friend, father and someone the Lord would be proud to call his child. Well I feld very badly in my own mind and soul. So as I re read an email from my first girlfriend, the only one nuts enough to date me, Cheryl, I really realized how fortunate I am to have AD. You see, I have invited her to guest blog, but no response, what an asset to this site she would be. Now remember she dated me (poor lady), her mom has AD and Cheryl works for The Alz. Org. in Colorado what a wealth of help.  But more than that, after we broke ups I had 16 years of a real messed up life.  So you understand and I am not sure I do, she was about 5'6"  115#, brown hair, brown eyes and nicely, well very pleasant to look at, not what a memory, she sent me a picture from that time, and a Leo. I always felt comfortable with her, but life goes on and people (me) screw up alot.  What does that matter to you or me, well I just described my wife of over 30 years. Now she is stuck with an AD patient and she is a Leo to, and I have asked her to post, but you know these lions the roar, but are really just pussy cats. Because of this and the special I have found that my family was my career and Mr. How Smart Am I, was not even aware of it. Cheryl and the rest of you have shown me that and I am well pleased inside.

Still confused and not sure what I will do from moment to moment but I am having quiet an adventure, and sometimes it is pretty rotten. Just spent a week isolated to my self and not really talking to anyone, without being short and less than Kind. I find that, at least i do, just wip back without concern of what I am saying. From those I tak with that have this disease seem to do that alot to. Well enough of me for now. Be good and take care of yourselves.

God Bless You & Keep You & This Country of Ours! (The World Needs Him To)
joe

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Tried Cooking Again!

I stopped cooking the last time I tried to broil some chicken and set it a blaze. It got done, but on the chrunchy side and a little charcoallly.

First I read my friend Marys blog, she had a great picture of a head with lettered blocks int it and telling how she had to get heres back together. I feel very slighted, she has more blocks in her head then I do, the wood peckers have gotten mine. But the two I have left crash together quite nicely.

I mad spaghetti tonignt. Used a can of Hunts Traditional, to which I added galick powder, bazil, parsley, salt, peper and sugarr. I saucted a full bulb of fresh garlic, halving each clove and added pistachio nuts to it with little salt, pepper, garlic powder and Olive Oil about 1½ teaspoons. Cooke the garlic and nuts until all the oil was absorbed, dumped it into the sauce, very unceremoniesously. Browned and well drained som hamburger and blended it in and cooked about half hour. Off course we cooked noodles to. It actually turned out. Not to bad of a day today.

We do have some good days. I want to let you know of what I feel is good, at least for me having this wonderful disease, it has given me a peace inside about dieing, which is what is happening. I am no longer afraid of it, nor worry about it. In fact I look at it as my next journey, after this crappy one is over.

God Bless You All & This Country of Ours!
joe

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Caregivers - They Need Love Too!!!!!

Yes those caregivers need a lot of love and tender care. You all know what us with AD & FTD can be like to care for. Talking to us or at least trying to can be very trying and nerve racking. My ability to hold meanningful concersations is starting to waine quite a bit. I get lost in them not to mention the poor person who talks to me. What follows is a picture of my beloved wife and I holding such a conversation. Do not lauugh to loud it is serious.

God Bless You & This Country of Ours!

Merry Christmas!!!!!

Joe

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CESTMOI

Yes,it is Tis I. Camelot humor. It seems to me that I just posted, by my wife reminneded me that it had been over a week. Time is becoming of little meaning to me and I no longer seem to have a grasp on it. Today is raining and windy, here in Sunny So. CA, love the rain. At one time it use to charge me up when it would get stormy, now nothing. I feel things moving faster now. I sit here and have to close my eyes to concentrate on what I want to say, and damned if I can figure it out.

Yes it is the Christmas time again. I hope you have a Jolly and Peaceful one. Maybe this time you and I can find away to keep this feeling always not just now.


This year let us not forget for they give us the freedom to live free and enjoy our lives. They sacrifice their lives for us and should be honored.

I know I am not staying very well on ssubject, byt my thoughts are getting in a bind you could say. I wish the old me was here, he could at least most of the time stay on topic.

I doubt that by next year this time, I will be writing here. Hopefully my wife will take over and let you know, where mindless has gone to.

A VERY MERRY CHRISTMAS TO YOU ALL!!!!!!!

God Bless You & This Country of Ours!
Joe

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Another Day in Dream Land!

where i get my titles is unknown to me. But it seems that my dreams and my reality are starting to be one in the same. I wake up hear voices, it is my dream entering my what ever you call it, I guess my here and now. It takes awhile for things to clear up. I am normally fine until this time of the day, after this 11:30 or so, the day just plain disappears on me. I no longer can do math by hand and mind, need a calculaor, pisses me off to no end. I had to leave twitter, sokule & facebook, could not keeep up with them. Hells bells I have enough problems with this thing. Had numerous on line business and affiliate accounts have closed them as well. Although things were witen down and all in a book organized, I got to confused and angry and just could not handle things. As of today the Joe that I once kew no longer exists. I am becoming someone else and I am not happy over that. Yesterday I turned 65 an age I never ever expected to reach or frankly wanted to, especially in my drunkin druggie days of my 20's. In my 20's did not know what the hell I was doing, somethings never change back in the saddle, no drugs or alcohol, don't need it now, brain is fucked as it is. Strange family was over last night but yet I was alone and am most of the time. Feelings towards others seem to keeep getting farther and farther from me. They are not leaving, I AM. I do not hear words right anymore, no car, problems with the bills and the check book, my wife Lynn can go to give me a kiss an it will scare the crap out of me. I forget who she is. So much for my babeling soon it will be Turkey Day, yes I will over eat and be in gastric distress big time. I even got some of the big words right this time, no red lines under them, look out. Bye for now.

God Bless You & This Country of Ours!
Joe

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With Sadness & Great Joy!

I will be posting another who has left this hell in which I live, that I call My World. Friend Arlene has pasted. I read it said of her that she lost the war but won the battle. I greatly disagree, she lost the battle but WON THE WAR. This disease takes our minds and bodies while it works, but you know the stupid bastard that it is, it winds up setting us FREE of its grip. So I ask in the final analysis, Who Wins?

I am sad that Arlenes' family has lost her vibrant character, but what joy they must also feel that she is now at peace and I believe with our Lord. I am jealous, her hell is over, mine is still going on and getting worse. Yes I can write, but I no longer can do the things I once did, my normal conversations leave some empty spaces. As I have said I have no concept of time. See I am writing now, I just got up and this is when I am at my best, few hours maybe less, well hello mindless.

I will post Arlenes picture later after I finish transfering it to my computer and stumble through the process of the posting.

Till Then.

God Bless You & This Country of Ours!
Joe

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What is a Friend?

I have become very confused oevr this. It seems that what I think (have to be easy there) and others is different. Maybe because it is more difficult to talkto me and keep things on track and the fact that I get angry easier has changed things betweeen me and others. I always thought and still do that you are honest totally with a friend and not afraid to be calllled on your BS and not afraid to call them on it. That seems to be a problem in theis world today. It is costing me friends. Even trying to explain things to them doe snot work. I guess this is going to be a new part of my life that I am going to have as this keeps getting harder.

I am still waiting for pics and info to start the memorial post for those that have proceeded me and are now at rest. I think they are the faces of this disease. Their fight was bvaliant and brave, they fought and tried against a foe that is not beatable at this time. They are my heroes for hanging in ass long as they could. They helpeed to pave the road I have to travel and I thank them for making it a little easier for me. The millions that suffer now and to come are my family now.

This is my story on this blog, but I want it to be a home for you as well. That is why things haveeeve ben changing and will continue to do so. Those of you that take care of us extreemely unpredictable persons, need an outlet and I am going to try and succeed with you help making this blog one outlet for you. It maybe moving to more of a website and changing the address, so that it can be more interactive for you who take the time to read my ramblings and need to converse with otherers in your position.

I have to stop now, my brain is not holding thoughts rifht now.

God Bless You and This Country of Ours!
Joe

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Something Different From Me

Yes a big HELLO to you all. I wish to thnak all of you who write to me. And those of you whose blogs I have listed although I may not leave comments I do read them in the back office of my blog, where I constantly recieve your updates,. This morning is calm for me, feels strange. But it is like the weather wait a minute things will change, so I though I would get this off now. Your sharing of your troubles with your loved ones brings a sense of calmness to me at times. See it is nice to know (unfortunately), that I am not alone out here. I want to say thank you for being there for me, it truly helps. You know you can comment however you chose, good, bad, rotten, ugly, beautiful, your choisce but remember I do not edit comments and they get posted as written. That is how I post and you deserve the same.

God Bless You & This Country of Ours!
Joe

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Through The Fog Comes Anger.

I have beeen reaing some of the blogs I follow this morning, which I can do from inside my blog. I get disturbed easily, especially by those in the "Medical Practice" and what they try to push. These are the very people (not necessarily the ones I read) that have told somany that live with me in theis World of Mine, that we were ok, just anxious, depressed and absent minded. See we did not fit in their fuckin little box, we did not adhere to pages 89-101 so we could not have any form of dementia. Now some of them have joined us in this world of ours and are bitching that people say they cann't have it because, THE BOX, is square not distorted. Mean this may sound but, you diserve to hear that crap your profession spit out at me and thousands like me. I make no appologies for letting you know how I feel, you see my life is worth just as muchas yours and I am loosing it more and more each day. It is harder for me to talk, walk and maintain train of thought in a conversation. I even forget who the people are around me more now. Probably by this time next year, if I am still around, my body will be here, but I will not. Alhziemers is doing its job on me and having a good time at it.
I saw a youtube asking fatso Oprah to help. This woman is only interested in her money and famous friends that may have this disease or know someone that does, than she does a show on it. It just discusts me to beg such people. It is us who do these blogs and what HBO did for us that is going to make the difference. Yeah the baby boomers are getting worried, WHY?, because a whole hell of alot of them are starting and will joine us here in the World of Forgetfullness. Where we these people when we cried out for help, toooo busy to hear us.
Wait till you look at your wife or children and have no idea why these people are in your house and what the hell do they want. Then the old mind comes back and you know you left, you want terror there it is. Come walk with me in my World and see how brown the grass is.

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

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My View On The World Today.

Nothing Else Be Said!

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Have Fun While You are Here!

Not being politically correct i wish you a happy Chanukah and a very Merry Christmas and best wishes for whatever holiday you celebrate.

I hope you enjoy the column at the right. There is a sight that shows 800 live world cams to watch. You can view the ever changing pictures of endangered animals. What you Tube also nearer the bottom there is a sport to go watch TV shows on different networks for your enjoyment. And you can also check out Big Ticket Depot: much like ebay & Craigs List - where you can sell or join your choice of things to do. Also this day in History.\

So much for spel chekcer now you have me. The days messsh together and trying to get here is a real problem. The dyas all seem to run together. I hope you enjoy the smileys, just a little fun to bring into the site. I just wish this World of Mine would or colud make up its own mind as to wherre I will be during each day. Sorry but the old brain cell hass to many thoughts init right now and I am a bit mixed over what to soy so, take care for now.


God Bless You and This Country of Ours!
joe

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