In Case You Have Not Noticed!!!!

I am giving my book away, for a limited time, FREE, you just have to pay shipping and handling. Also part of the s&h will be going to the Alzheimer's Disease Research Fnd.   I never wrote the book to get rich only to raise awareness for my side of the fence.  If giving the book away helps achieve that great, and along the way you will be helping the ADRF and it's work, plus raising awareness.


God Bless & Keep You and 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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Because of You!

Yes because of you my every growing famliy out there we have made progress>
As you may or may not know their are something close to approaching 100 million sites on the Internet world wide. When I started the story of mine and asked you to join in this blog was number 57,xxx,xxx million something in standing. Well we are making an impact somehow, because it is as of today 927,085 in standing, Good JOb you guys. Out of the 10's of million in the US, we are now listed as 190,851, I am so humbled by what you have done.

Also thanks to those who have purchased my book.  I truly hope you enjoy and pass on the info to others. Now on the other hand me being a very tiny little bit mercenary - tell your friends to buy it and have them help spread the word as well.

I am going to invite more to post here soon. My haze is starting to get heavy and is keeping me from my job to let all know, how really crappy I feel. but yesterday I was a ball of fire, was so busy donig things, were it came from is beyond me.  Today different story.

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

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Hello to all as we near the end of this year. I am still in February I have no idea where the rest of this time has gone or what has happended. As some of you know I attend a 12 step group and have for centuries to fight my disease of alcohol and am still sober some 37 years. I was at a ongoing meeting on Christmas Eve, we have what they call marathon meetings around certain holidays to add extra support, what made this special to me and has caused me to wonder if we have the stages of AD right, yes we have it starts and you die correct, but the inbetween seeems to be not so straight forward. I know I have written on my blog the stages, others have, Alz Org has, but you folks, my experience and what happended Christmas Eve tell me in my mind at least that there is no set inbetween stages actually, that we experience similiar things to a greater or lesser degree as suffers. I man shared at the meeting that his father had passed in the last week from AD and he was happy for him and said how he felt. I fortunately had the oppportunity to talk with the gentleman after the meeting, hugged him and told him I was glad his dad had been set free. We looked at each other and I know he was confused, hell I know that feeling, so I gave him my card that has my book info on it. We talked about how his dad was diagnosed about 3 years ago with it, for most of the time he was level had some problems then came the LINE CROSSING, 4 months ago when we knew no one and went downhill and died in the 4 month period from AD. He and I feel the same if we can prevent ourselves (he does not have it yet) from getting to that line to end it before. He saw the suffering of his father and the destruction on the family and does not want to go through that or put the family through it. Unfortunately his mother is at some point in the disease, where?????? Another lady joined us and told about her parents dying from AD a number of years ago and as I listened I could hear that her parents did not follow the so called stages either. Yes they had portions of them but kind of out of order. I see that in myself and think what master mind is comming up with this stuff. Maybe we need to revist how the disease really progresses, the middle part, we know that it starts and then we die. I know for me this is long, but I was very much touched and moved by these folks, I could see their suffering, but they were able to understand to a point my side. Especially when we talked of how they could get away from it and here I was at this meeting still getting support to help me not drink and I brought along old Mr. AD, i cannot get away from it not even a second.

Well I need to shut up, take care of yourselves and if I forget, Have A Very Happy New Year one and all.

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

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To You & Yours

From me and my family, to you and yours A Very Merry Christmas.

I remembered.

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

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Here is hoping that you all had a wonderful day yesterday and stayed safe. As for me I helped to expand my stature in life, I ate.

I had an interview with a journalist sometime this week that is doing a two part piece in the local paper here on me. I guess she was promted by my post of Who Speaks For Us. We discussed my anger in the posting and she cam to understand that I was not against boobs, but the fact that there really is very little media about us. We talked about how we are throw aways. I also expressed my disappointment in the Alz Org for not being more media concious. Walks are great, working quietly with lawmakers to get things moving is nice, but without hard media coverage does not help that much. NOTICE we now have a pill that will help about 70% of those who take it not to get AIDS, is that not nice for those that want same sex and needle sharing.  From about 1983 or so till now we are stopping these folks from dieing (which is great), only 25+ years to help them, of course that was media push and political movement.

But here I stand with over 5.3 million (very low estimate) with AD, and we are THE WALKING DEAD!!!! like it or not that is the plain raw simple truth, known since 1906 well what do we have, meds that may slow things for a short time then down the hill you go. Yes we with dementia are B movie actors, Zombies of the World, Night of the Walking Dead, etc. Yes I am pissed. I will stay that way and continue with your help to get us a VOICE that will not be Silenced.

Each day that butcher in my brain takes more of me, not thin tiny slices anymore but it has widened the blade and the slices arre gettting thicker. I st5umble more, lost in conversations most of the time, sit and my brain goes off somewher and leaves the body here just fixed. I believe that I am starting to have ciesures not the roll on the ground type but where my mind just flakes. It is getting harder to post, the things come to my head, but get lost before I can write them and I sit here trying to figure out why I am at the computer and just get up and walk away.Everyday living is becoming a task, simple crap just is major, the fun is leaving. I now no the rages of this disease and the loss of who people really are.
My once strong strength to concentrate so I could talk is weaking quickly and I can be pulled off subject in a second and not be able to return. Right now, I am alone and the house is quiet, so I can talk to all of you, but it has taken since about 6 this morning to put this together. This blog has become me and I guess my crusade to awaken people that we do exist and that they very well may join us shortlly unless there is such an out cry that people move, THIS IS NOT AN OLD PEOPLES DISEASE, there are those that were born the same year as me that are a cpl of years dead now from AD. I am onl 66 now, stat wise about 2-4 yeras before I get the hell out of here.

Take care of yourselves and be good to each other.

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

PS that goes for all those on this planet.

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Just A Note

This is to let you know that my book is now available online at Amazon.com and BarnesandNobles. Kindle and Nookbook electronic downloads are available as well.

This Saturday past, we had a Memory Walk here in Oceanside and it went well. Old fleet of foot here sat on his fat you know what, bad feet. Did get to me a wonderful lady, Cheryl, who lives in the area and follows my blog, nice to put a face on a name.

Bye for now.

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

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As The Present Fades

I am still amazed at this point that I can still converse with you and tell you how things are going in my journey or battle if you will. In the beginning and still now i am prepared for the mental walkings and goings but I was never prepaired for the physical problems.  Walking with a swagger, actually kind of a stumble and hunched, feeling icky most of the time, getting exttermely upset around people and sweaty like a pig, shaking like i do, not able to hold things all the time, just not ready for this crap.

I find my world in fading in and out now. I recognize family and people and suddenly they start to become someone else. Same person standing there but my brain seems to switch off and step back and say who the fuck is that. I am finding this to be happening more and more, I feel like i am fading away from Joe and going somewhere and I cannot stop it anylonger. I really wish I would hear from others in this world of mine and what they are going through and how they feel. It is really a lonely place, yes I have people around me that care and help, not the same, they are not here with me, in my reality such as it is.

I must go now my mind is confused and i am getting very angry.

God Bless You & This Country of Ours!
joe

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Par Boiled Fanny

Yes yours truly master of home repairs and as dense as a tree was at it again today. One needs to know that me and ladders do not belong in the same universe, I get on one and by the time I reach the second step on it I am 30 pounds lighter. Today we started on clean the outside of the house, redoing the pation and th driveway. Well do to my immense brain power I got on the roof to wash down the roof and upstairs portion of the house.  Well sitting on the roof was a bit on the hot side. Did you know that when you spray down a roof that the sun has been beating down on the water turns to steam, well I do now. As this small river came rushing down the roof towards my secure spot, it reached my butt, yess my backside, and it cooked it. I felt like I was sitting ing boiling water, guess what DAH i was. I am fighting this disease the best I can, but the longer we go down the road, the more I find out what I do not know that I thought I knew, before I found out that I did not have the first idea about it.

Lately when I get up I am not able to finish crossing that bridge from sleep to being fully awake. I was talking with my ologist this week and he asked if I felt like I was is a fog.  Well the answer is yes, the above is proof of that.Things are just not clear to me any more and I stop more in the middle of things then I did before and wind up doing something else. Each day I decide to write on here and say I should write things down before I post so I remeber what it is that I want to say. GREAT IDEA, problem is I sit down to do it and forget what it was I was going to do, welcome to dreamland.

Well I need to stand right now so you all be good to yourselves and THANK You for helping me win the new award posted on our blog. This is your victory as well.

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

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Just When You Thought-------

For the last couple weeks I have been considering not posting any longer since ther did not seem to be any response to anything I posted. Especially yelling at you my extended family for not using the tools given to you. I guesss as we move forward I will become less tolerant and more bitchy. My wife will probably say I have already made it ther.  I know I am more withdrawn and really don't care much about things, even my KOI ponds.
The book here "When Can I Go Home?", i got to read before it came out.  See Dr. Joe is a friend of mine, even though he is a Phsyciahtrist, i cann't speel, that does not make him bad. It is a pretty good book for
caregivers to read I think.

Here is why I asked so many of you to become posters on this blog:

Message = Just found your blog and it is great.  It might be a good help for me to understand my husband.  He does not talk much about what he feels and when he does he yells.  I try to listen but how do I get him to talk without being so mean?  He has alzheimer's and was only diagnosed a few years ago but it seems that he is slipping more these days.  I hope your troubles are few.  You look like a fun guy.

Forget the last sentence. I get a great deal of emails from people like this lady. I can only answer from my side. She needs help fro you guys, you can see she is drowning in a sea she does not know how to swim in. Please POST and help her. This is part of my reason for not wanting to continue to post. I feel that we as a family are failing people like this lady. My emotions control me now rather than the other way around.  Even if you do the same thing each day I am sure you do something different, maybe a minute that can help someone. I do the same thing each day, become more forgetful, angry, frustrated, pissed, fingers hurt typing all of this, my brain wanders while I am tyring to post.  If you want to be a guest blogger on my blog, send me your email address and why and I will email you the link.  Postings have to be all related to Dementia in anyform or caregibing to Dementia patients.

God Bless & Keep You & This Country of Ours (Help The World Too)!!

joe

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God Does Still Does Miracles

Some of you may recall me talking about my friend Dirty Butter, real name Rosemary. A link to her page is on the side of my blog. This daer lady was given a diagnosis of Parkinsons and some other neuro disease back 2006 or so. See they, the doctors heard houff beats and immediately saw horses and not the zebra that was in the heard. Well things progress and finally someone really takes a look at this strange looking horse and after testing and thinking and checking finds that DB does not have Parkinson's afret all but:

Essential myoclonus occurs in the absence of epilepsy or other apparent abnormalities in the brain or nerves. It can occur randomly in people with no family history, but it also can appear among members of the same family, indicating that it sometimes may be an inherited disorder. Essential myoclonus tends to be stable without increasing in severity over time. Some scientists speculate that some forms of essential myoclonus may be a type of epilepsy with no known cause. (this was cut and pasted from dictionary).

This is treatable with med, probably will not be cured but her life is becoming beter each day and will continue to. The jerks, twitches, spasms and the like are supsiding. I cannot tell you how much joy my heart is filled with for her. God loves her and so do I.

God Bless You and This Country of Ours!

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