August 28, 2012 - Alzheimer's Speaks Radio

Yes you lucky buggers at 9am PST on Tuesday, August 28, 2012, yours truly will be babbling on Alzheimer's Speaks Radio on the Web. Click on title of show below. There is a phone number that you can call in on and ask questions. Suggest 10 minutes before show time, not sure if you can during the show. But you get one hour of me if I last. Lori La Bay is the host and runner of the site.
Making Choices For Those Who Can't & Living with Dementia

A side note of sorts, I promised a friend that I would try the Coconut Oil and I have been. To this point I cannot say anything except I have not died from it. No changes to my inabilities at all, in fact my balance is even worse and moving this battleship from spot to spot is getting harder. I am sure that has nothing to do with the coconut oil. My brain cells are still scrambled and bouncing alll over eahc other more so.

Those of you that may remember The HBO Alzheimer's Project and the PBS The Forgetting, with joy for those who passed there are only 5 of us still in this miserable state, Yolanda Sanmartino, Chuck Jackson, Isabel McKenna, Nacho Sanchez and myslef, that is all out of about 11+ or so of us.

Till Next Time Take Care of Yourselves.

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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Welcome to Our World, Bobby Vee.

Bobby Vee was a pop singer in the 1960s, diagnosed with Alzheimer's a year ago, he is now 69. See not an old farts disease. I welcmoe him to this World of Ours so that he knows, should he ever read this blog that he is not alone he now has a family of millions and growing by the minute.  So welcome friend.
I also learned last evening, I think it was, that my Son-in-laws father has been diagnosed with Stage 1 Alzheimer's six months ago. They just found out. The man is I think 10 years my junior.
Looks like what we have said all along from the beginning of this blog, Alzheimer's is not jus an old persons disease. Which the Alz.org finally in recent weeks has said, some folks are just slower than others.
My day has just been a day, mostly sleeping this morning, finally getting on this beast and ready to go off somewhere else.
If you do not want to comment, you can just rate a post, check interesting, thank you and what ever the other one is. At least that will let me know that the posts are read. Thanks for being there for me.

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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Strangers in the Midst.

I have done my veyt best to fight this disease with all the mental strenght that I have had. I have allowed it to take its tolll on me physically because my mind was more important and is who anaad what I am. Well itt has marched on and I have not, it is to the point I look at those in my house and wonder who they are. I know I sould know them but I do not. I pretend to be in touch but well Mr. Alzheimer's has taken over and made him serlf at home. I rarely hear from any friends or see them, I hardly hear from any of you anylonger. There once was a time the commentss and emails were difficult to keep up with, now the emptiness of that is setting in. I know everyoe has their proble,s and life to live, but the anger that this disease hels to raise, while not really justified, it happens and and this world of mine has grown smaller, colder, darker and emptier and really not worth being here, I pray and even beg to be taken, but it is in his time. I have nothing more to offer or give and do not know why i am here.
Well i am loooosing my train of thought so take care of yourselves.

God Bless & Keep You & This Country of Ours! (Amd je Rest pf upi as We;;)
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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Our Day of Rememberance.

I think the world knows what took place this day and I do not need to tell you.  What has gotten me of late are the emails telling me to Remember The Flag. To fly it today. See these are the folks that go to church on the holidays only.  I am an American, my Flag flies 365 days a year day and night (it is lit for the night). I have flown the Flag for over 20+ years on my home. This is my heritage the 200+ years of this Country. I pray for all those who put their lives on the line daily for all of us World Wide so we can live free.

Enough of the soap box, my days have been crapy lately, i am getting fitted for mobility movers so I can go out with the family. Also to help get my fat ass off the couch, you know a cushion that liftss you up gentteling and puts you in a standing position. Yes my mind still for some reason still works, but the physical parts of Alzheimrer's are rapiddlly taking over. Brain wanders a lot. For the most part I stay in, sleep at the drop of a hat, watch my fish clean their ponds, which just wears me out. Still get lost in the days though. Just like trying to post here, i sit down and just starrte at the screen and forget what the hell i am doing here. Oh well at least i still remember to breathe.

You all bne good to yourselves and stay well.

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

PS the blessing includes all of you World Wide. I Forgot Dr. Sivak has a new blog when i find the emails i will post it.

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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 wonder why I bother to share my Journey!

As many of you know i get rather testy at times and just fell like saying to hell with it, you do not need to know this or how I feel.  Then i get an email like the one tha follows, this is why I keep trying to give us a voice.  Parts are edited since it came to my private email so no name of way to tell who it is from. But i did write back to the person, took me a short time then longer. I asked for a pic and name and dates for my memory page, but like soooooo many of you i receive nothin back. I post the pics so people will know that these folks lived, they gave, they touch others lives and that should be celebrated. well to the email i am getting on my soap opera box. by the way this has been on my todo list for sometime, i am quick.I was asked if i filled out the facebook form, YOU BET YOUR SWEET A__, I did.

____________________________________________________________________

Hello, My name is xxxxxx, and I'm a nursing student studying in xxxxxxxxxx, xxxxxx (Canada).  I watched The Alzheimer's Project documentary, and was very touched by your story.  I know you have probably heard this from so many other people who have read your story online, or watched this same documentary, but I would like to thank you so much for contributing your own experiences and stories to helping understand and find a cure for Alzheimer's.  I was asked to write an essay for one of my courses at school on anything I wanted related to disease and disease concepts.  I chose Alzheimer's because my grandfather passed away from A.D. 10 years ago.  I never had the chance to really get to know him, since his diagnosis occurred when I was only 2 years old.  By the time I was old enough to have memories of my own, he had already progressed to the very late stages of the disease.  He only spoke Italian, which I did not, thus I had very limited communication with him.  My memories with this man consist of visiting him at the nursing home, where he stared at me with blank eyes. I fed him and walked him around, and told him stories.  When he passed away, I felt like a part of me had been ripped out of my chest, and it was difficult to accept that I had not known him better, and could do nothing about that. I appreciate hearing from someone who can recount his own experiences with this disease. I do not have personal experience with this disease, and was only an observer to something that took away someone I loved.  However, I believe that it takes great strength to explain what it feels like to go through something that takes away from the person you have grown to become.  I do not know what has happened to you or your family, or if you crosses "the line" since the documentary was filmed. I would only like to thank you, quite simply, for giving me a story that my grandfather never was able to. So thank you, truly, from the bottom of my heart.

God Bless & Keep You & This Country of Ours!

joe

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Alzheimer's is relentless!

Well it has been awhile since last i was here. Things in my world are getting very disarrayed. I find i cannot even be sure of what time it is each day or exacty what i am doing. Alzheimer's is working hard and i am still being stubborn but it is winning this battle, in the end i win. Mly head hurts alot these days and i do not know why asprins do not help it just feels like someone or thingh is n my head squeexing everything together.  Well maybe that is good, keeps my brain cesll together. I am finding it more difficult to post or even to figure out why i am at the compute most days. I sit and stare at it alot but it does not say anuthing to me, damned thing. I am totallly lost on the days now and even almost completely unaware of when someone is or is not in the house, i think they have just gone and they just got home or never left. Very frustrating and i do not even want to think about it which has be a bit miffed over things. i am rambling time to go be good to yoursleves.

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

PS, I guess things did not go well for Alan at Mt. Denali and he is off to number five now. I was told weather was realy dangeous on the mountain.

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Your Help & Advice is NEEDED.

I have a decession to make and i am asking you to help me with this. Now i know many of you do not leave comments or only once in awhile, i have found that person anonymous on my site, you know the one that tells the media something or politicians heard it from. But however you chooose to answer please do.

Some of you may remember the short clip in my tiny part of The Alzheimer's Project, where me and my phycologist were talking, he was the good looking young guy with the nice hair.We met the other day, yes i still see him, the poor guy needs help with his car payments. He is very aware of my blog, the documentary, my book and the number of people you have helped me reach. If you use the resources on the side and go from one to the other and use there resources you will eventually reach over 1200 sites for caregivers, information on various forms of dementia, different blogs of those suffering, charities and the rest, all because of suggestions you have passed on to me.

Here is the skinny as they say, whoever they are, Dr. Cain has suggested tapping my sessions now that thingss are going to hell in a hand basket and posting them on my blog. I can post them there or to my You Tube account. You all know i hold nothing back and some of ours sessions are alot livelier and wordy then my posts. He has no problem with it, i have no problem with it, Lynn is undecided at this thime.  We are thinking it will give a better face to the disease not just words, but you get to see my Bright Shinning Face and drool I know it is tough being me. But you couls start to see the true reality of this bastardly disease.

YOUR COMMENTS AND THOUGHTS PLEASE!

God Bless & Keep You & This Country of Ours!

joe

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Let's welcome Dana and Her Family

Dana Kruckenberg  has a blog called Today's Project where she posts when she can about her husbands battle with Alzheimer's and how she copes with it. Visit Her and I know you will all welcome her and her family into our extended family for strength, guidance and hard reality.


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

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New Tests Ahead

Saw a new nerologist yesterday, she confirmed the tremor diagnosis, last one referred us to her. Also have a some type of nerve tests schedulled, she thinks there maybe nervve damage in my hands and feet. By the way the one that asked me if the last neuro was good looking, OH YES. This one is ok. Also being tested for sleep apnea, which we know I have but need new equipment means new measurements and the rest of the crap. The AD and FTD are not enough, now reach into the bag and see what else you find.

I am trying windows writer for this post not sure how it will work.

God Bless & Keep You & This Country of Ours!

joe

PS. In case I forget to post it Happy July 4th.

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Welcome to Our World Mr. Campbell.

Yes country singer star and legend as they say GLEN CAMPBELL has joined our ranks. It was announced sometime yesterday I think, that he is in the early stages, we know that means more like the mid, since they have no idea of what early onset really is.  I for one am sorry that he has it, but on the other hand I welcome him to Our World with Joy. See he is a star a person of importance, so I am sure he will start to get a lot a press about it and talked to.  But whatreally pisses me off is why it was announced: According to the news media Mrs. Campbell and Glen wanted to go public about it, now get this, SO THAT IF HE HAS TROUBLE ON STAGE HIS FANS WILL UNDERSTAND! Sorry folks i have said it before and will say it again money is what talks period. I am a fan of his and like his music, but sorry reason is way off base and bullshit. My Opinion. Just think how the rest of us are treated and regonized and the differrent treatment he will get.


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

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Hi All.

Well i decided to do as my Dr. requested i went and saw a neurologist today. Met one with some brains actually, she feels that the meds they have for us are really of no value, she has yet to see them help anyone. Smart lady.  She has determined after trying to kill me that I have orthostatic tremors. The meds i am on are supposed to help these, right, we have added one to the list, we will see. However she referred me to another of her spieces  that is supposed to have this as their specialty. We went over my PET scan that i had had and finally got a real discriptive  telling of my brain, it showed considerable damage, loss or destruction if you will to both side temporal lobes and the frontal, and other abnomalities. Of course she did not know the other abs is my most wonderful sense of humor, did not have the heart to tell her.  As she did those reflect tests, it sounded like she was beating on cement on my knees. did not do well on rest of the things, but that is the way it is. Her only thoughts at this time to help me to stop shake rattle and rolling, is the possibility of DEEP BRAIN STIMULATION!!!!!! Who knows what monsters that might awake. Oh well we will see what her cohort has to say.
To all you DADS (Dads Against Diapers) you have a wonderful Fathers' Day.

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

PS. for those who followed my great KOI adventure, my two prized KOI died this week. Buggers they got out of here beforre me.

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Getting SStuck In time.

I am becomming more confused eac day. I sit here to write and just draw a complete blank. I feel that thi journey is getting rather rocky and bumpy now. When i started this blog, which seems like centuries to me, i was filled with a fire and a passion that was overwhelming me. You all know how i feel that we who suffer from Alzheimer's, Lewy Bodies, Parkinsons, Frontal Temproal Dementia, Vascular, etc. do no have a voice for us, i still feel that way, i do not want some so called expert, caregiver, reasearcher, etc. speaking for me and telling how terrrible this is and the problems and heartbreat they feel caring for us. Hell that does not put a voice or a face to us, to u yes, us no. Like it or not, WE hold the key to this disease. We have the answer, not you, we live it, why are we not asked, why are we not the experts, why is it not us that talks to the media and the big stars to tell the story? You do not know this side at all.  When it started for me it was small slices of my life taken each day, those slices have grown steadily until they are now steak size. The passion is still there to tell the story, but the fire is just a glow now. I feel like i am talking to me on my left side, i am deaf in my left ear, i feel like my blog has lost it's thunder and no longer reaches out and is heard. Yes i hear from folks once and awhile but not much anymore, I cannot begin to tell you how lonely it is inside my mind what is left now. I cannot realy even talk about things much anymore. Hell the fire and fuck the world attitude  has tempered down, I am understanding how the others that were in the hbo documentaroy felt and relate lmore to the world they became to know.
My niece died thursday, she was in her forties, i feel for her husband and three sons, but more for her mother and father, see we are to die before our children not out live them.
This is becomming way to much, there are things i want to do, but i forget them or just plain have no motivation to do them. I rarely sit by my ponds any more, my interests seem to becoming less daily about anything.
Well until i remember you are out there again take care of yourselves.

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

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Gingrich to Alzheimer’s Association Advocacy Forum attendees: "We should be able to come together to address Alzheimer’s"

May 16, 2011

Former Speaker of the House and Alzheimer’s Study Group Co-Chair Newt Gingrich addressed more than 600 advocates to begin the second day of the Alzheimer’s Association Advocacy Forum. Throughout his hour-long remarks, Gingrich encouraged advocates to speak out and share their experiences with elected officials.
"The Constitution says, 'We the people,' not 'We the legislators,'’" said Gingrich. "One of my goals here today is to assure you that you have every right and responsibility to go out and tell elected officials what is going on. You are the living embodiment of the Alzheimer’s issue."
Gingrich emphasized several themes, including the ongoing need for bipartisan support of the fight against Alzheimer’s — an issue he embraced when serving as co-chair of the non-partisan Alzheimer’s Disease Study Group (ASG) with former Nebraska Senator Bob Kerrey. 'Alzheimer’s should be a totally bipartisan issue," said Gingrich. "Alzheimer’s does not just affect Republicans or Democrats, liberals or conservatives. It affects Americans. Therefore, as Americans, we should be able to come together with no partisanship to address Alzheimer’s."
Gingrich highlighted the high financial cost of Alzheimer’s disease to Americans both now and in the future. He emphasized the need for investment in Alzheimer’s research — and the potential cost savings if methods of treatment or prevention could be realized.
"Between now and 2050, Alzheimer’s will cost the American government an estimated $20 trillion," said Gingrich. "Yet today, Alzheimer’s research is grotesquely underfunded. We need the scientific community to tell us the optimum they could invest in the next 10 to 15 years. What could they do if they had the resources they needed to save lives and save money?"
To conclude his remarks, Gingrich shared his overall optimism that the dream of a breakthrough in Alzheimer’s research and awareness is on the horizon.
"I’ve seen things change," he said. "Every generation of Americans has been allowed to dream, and every generation has seen some of their dreams come true."
Following a brief question and answer period, advocates left with much to discuss.
"Anyone who is standing up and advocating, I respect," said Suzette Armijo, an Alzheimer’s ambassador from Mesa, Ariz. "He understands the impact of this disease. He has big dreams and broad ideals when it comes to this issue. It shows us as advocates that there are people on Capitol Hill who have those feelings. It gives us hope."

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Alzheimer's Association Advocacy Forum 2011
www.alz.org/forum
© 2011 Alzheimer's Association | www.alz.org | All rig

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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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