Showing posts with label yesterday. Show all posts
Showing posts with label yesterday. Show all posts

Wednesday, December 7, 2011

My Life and Times With Alzheimer's.

I havenot posted is sometime. I have not been around for sometime. My brain has been on Jupiter and I on Pluto. Last few weeks have been very trying and uncomfortable for me.  I am not used to being sick alot, but I guess I have no choice in the matter. Also  have become more i guess you would say going in different directions while triing to go forward. Things are finally catching up.  I am getting more and more losst in each day, for get talking to people that is becomin a chore. I still can come here and tell you how shitty it is getting.Iknow that we hada howuse full on Thanks Giving and I have been not with it since then at least. We are dog sitting or I guess we are seeing if we will be keeeping my one daughters dog for a whilce since the are moving. Just another thing to get under foot. So far thisis becomming a rather crappy holiday season, and it is nobodies fault. It is just my constant companion Alzheimer's moving in the heavier furniture for its final push however long that may take.

To my friends in Israel, you asked for my father and mother's names well real hard on the father, Joseph, my moms name was Muriel.  Both have been gone for sometime, my mom over38 years and my day close to23 years. I have been very touch lately by those in other countries that have written me and I am glad that they are part of this family of ours.

I want you to know that Yolanda Sanmartino who was in the HBO Documentary is still alive and with us and of course me. We are the only tow left from Memory The Loss Tapes, and at least two of those fetured in the Caregiver part have past. Friends keep me posted. Out of 10 people seen and spoken of in the documentary only two of us are left that I am aware of. This show was done in 2008 and released in 2009 mid year. So in that short period of time 3½ years, eight have passed and most all in the 8 year or less time span. I keep being told how this disease affects people dirrerntly and I am aware of that but it still claims us when it has finished us. But what sweet freedom afterwards.

Everyone says that there is nothing good about Alzheimer's or other forms of dementia, wellI am here to tell you that it has put me at peace about dieing and that is good, it also is starting to rid me of not only good memories but many of the ones that causea great deal of pain and let me tell you that is good.

Well my head is staring to wander and hurt, take care till next time.

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

Saturday, July 9, 2011

Alzheimer's The Relentless Predator!!!!

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

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

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

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

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

Thursday, June 23, 2011

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

Tuesday, May 17, 2011

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

Tuesday, April 26, 2011

New Findings - Interesting Support The Cause!!!

Causes

Bulletin from the cause: Support Alzheimer's Research

Go to Cause
Posted By: Fisher Center
To: Members in Support Alzheimer's Research

Significant Finding in Nine Months by Fisher Scientists

Scientists at the Fisher Center for Alzheimer's Disease Research at The Rockefeller University, led by Paul Greengard, Ph.D., and Jennifer Warner-Schmidt, Ph.D., have shown that anti-inflammatory drugs, which include ibuprofen, aspirin and naproxen, reduce the effectiveness of the most widely used class of antidepressant medications, theselective serotonin reuptake inhibitors, or SSRIs, taken for depression and obsessive-compulsive disorder and anxiety disorders. This surprising discovery, published online this week in the Proceedings of the National Academy of Sciences, may explain why so many depressed patients taking SSRIs do not respond to antidepressant treatment and suggests that this lack of effectiveness may be preventable. The study may be especially significant in the case of Alzheimer's disease. Such patients commonly suffer from depression and unless this can be treated successfully, the course of the illness is likely to be more severe. Depression in the elderly is also a risk factor for developing Alzheimer's disease and researchers have suggested that treating depression in the elderly might reduce the risk of developing the disease.

LEARN MORE: http://www.alzinfo.org/04/articles/fisher-center-scientists-show-anti-inflammatory-drugs-reduce-effectiveness-ssri-antidepressants

Call to Action

Support the cause. Be counted:

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

Monday, April 4, 2011

Click Me Find Out Those of Fame That Died from Alzheimer's

To those that went before me, I am trying to give you a voice as well. The title is a link to a listing of those who of fame have died from AD.  And Still the medical profession and sorry for this Alzheimer's Association have done crap to help us. Lot of studies, lots of meds, NO CAUSE, NO CURE & MEDS THAT DO NOT REALLY WORK!!!!  Only true diagnosis, cut the brain open at death.

The closer i get to the end the angrier i get at this world of ours, 2nd most dreaded disease and who talks about it. So Called Experts, who really have no idea what we with it go through, WHY?, because they do not listen or ask they know it all.

Everything causes it and everything can cure or hault it, in the end all this fails, we just fucking die. Cancer Society song is Happy Birthday, great for the survivors which there are millions.  Alzheimer's new song, So Long It has Been Good To Know You!!! no survivors.  Yes there is anger in me today, not for myself but for those that do not speak out without concern for hurting peoples feelings and not being polically correct.
I stand at the gate to this World of Dementia and I put out my had to each that enters every 70 seconds, to welcome them, to tell them they are not alone regardless of the failures of their fellow man to really help them.

Go ahead an rip me a new one. I am ready, but when you do prove me wrong and show me that ONE SURVIVOR.

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

Sunday, April 3, 2011

Alzheimer's - The Miss Understanding of Many People

What follows is a statement made of Caring.com by a supposed, i use the term very loosely and with distain, 20yr Professional Caregiver.  Persons words just prove what I have said here, we are not understood and we need a voice, and not from the professionals.  My response to this very ill informed ass and Lynn's is there also.  Pleaase understadn that most of the people on Caring.com are really people who care and are trying to undeerstand and get good information not this type of pure crap and idiocracy.
"it's an illness, it's difficult but it's not ugly, horrible, demeaning, cruel.
i know that no-one i ever look after ever could remember my name, but i remember theirs. and i walk beside them. that's what caregiving is. it's not oppositional, it's walking beside who this person actually is now. it's about forgiving them for their illness."
Frena wrote the above. Well maybe if you had the disease Lady, you might just find out how ugly, horrible, deameaning, cruel and damnable it is. See I suffer from it, so do not hand me that load of crap. And i do not need yours or anyone elses forgiveness for me having this disease. Expert you are not, you do not live in this world. I and over 5 million people at present in thsi countyr of orus do.
Joseph
/this is Joe's wife, Lynn, I am surprised that he was very calm in the response to your letter. This is a disease. It is ugly and horrible. Nobody wants to loose their minds and that is what happens with Alzheimer's. I do not know of anybody that has this disease who needs to ask for forgiveness from you or anybody else. The people who have cancer which is a disease don't ask for forgiveness why should the people who have Dementia. Maybe you need to rethink your profession.


Read more: http://www.caring.com/questions/tell-parent-she-has-alzheimers#ixzz1ITq5Jin3



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

Saturday, March 26, 2011

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!

Monday, February 7, 2011

Due to an on slaught of complaints, meaning your eyes are getting as bad as mine, I have once again changed the look of the blog. Hope you all like it. If not wait a few months or so and when I remember I may change it again.

Till then may all you "normal people", whatever that is, enjoy your life on the otherside of the fence, because it is really slippery over here on this side.

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

Thursday, February 3, 2011

From The Mountain Tops - WE WILL BE HEARD!!!

From: Alana Rogers <ARogers@Biosector2.com>
To: JosephPotocny@yahoo.com
Sent: Thu, February 3, 2011 7:57:16 AM
Subject: National Family Caregivers Association Joins 7 Summits Climb for Alzheimer's 

Dear Joseph,

Knowing your interest in Alzheimer’s disease and family caregivers, I wanted to share with you a recent update on The 7 Summits Climb for Alzheimer’s: Memories are Everything campaign. 

To kick off 2011 – The Year of the Family Caregiver – the Alzheimer’s Immunotherapy Program of Pfizer Inc. and Janssen Alzheimer Immunotherapy today announced the addition of the National Family Caregivers Association (NFCA), an organization that empowers family caregivers to act on behalf of themselves and their loved ones, as a supporter of The 7 Summits Climb for Alzheimer’s: Memories are Everything campaign. 

NFCA joins the campaign just as alpine mountaineer and Alzheimer’s disease advocate Alan Arnette successfully summitted Aconcagua in Argentina, his second climb of the 7 Summits.  From the top of the summit, Alan dedicated his Aconcagua climb to family caregivers of loved ones with Alzheimer’s (you can listen to his audio dispatch here:http://www.alanarnette.com/blog/2011/01/29/audio-dispatch-from-aconcagua-5/). 

As you may already know, Alan is seeking to climb the 7 Summits, the highest peak on each continent, in order to help raise awareness of the enormous financial and personal burden Alzheimer’s places on people with the disease, their family caregivers and society.  With two summits completed in just a few months, Alan is well on his way to achieving his ambitious goal. 

Alan was his mother’s caregiver during the time she lived with the disease and knows only too well that the burden of caring for these people often falls to family members and friends:
·         In the U.S., an estimated 10.9 million unpaid caregivers see to the daily needs of people struck by Alzheimer’s
·         In 2009, these caregivers provided about 12.5 billion hours of care 
·         Caring for a person with Alzheimer’s can be overwhelming, and research shows that caregivers themselves are often at an increased risk for depression and illness
·         In the U.S. the indirect and direct costs of caring for people with Alzheimer’s are estimated to be more than $ 100 billion a year

Alzheimer’s disease, the nation’s 6th most deadly disease, gradually destroys a person’s memory and ability to learn, reason, make judgments, communicate and carry out daily activities like bathing and eating.  Alan hopes to raise $1 million to go directly to the Cure Alzheimer’s Fund™, and now NFCA to advance Alzheimer’s research and provide support for family caregivers, respectively. 

You can follow Alan’s journey and encourage people to donate to his cause by visiting www.Climb4AD.com orwww.Facebook.com/Climb4AD.  Additional information is included in the press statement below.  Please let me know if you have any questions or would like to speak with Suzanne Mintz, president and CEO of NFCA, or with Alan.

Best,
Alana

Alana Rogers
Biosector 2
450 West 15th Street, 6th Floor
New York, NY 10011

P 212.845.5627
F 212.845.5650

*****************************************************

Below please find press statements issued on February 3, 2011 by Janssen Alzheimer Immunotherapy and Pfizer Inc. of the Alzheimer's Immunotherapy Program about The 7 Summits Climb for Alzheimer’s: Memories are Everything campaign.

National Family Caregivers Association Supports Advocate in His Mission to Raise Awareness of the Burden of Alzheimer’s Disease

SOUTH SAN FRANCISCO (February 3, 2011) – Janssen Alzheimer Immunotherapy, together with its collaborator on the Alzheimer’s Immunotherapy Program, Pfizer Inc., is pleased to announce the addition of the National Family Caregivers Association (NFCA), an organization that empowers family caregivers to act on behalf of themselves and their loved ones, as a supporter of The 7 Summits Climb for Alzheimer’s: Memories are Everything campaign.  NFCA joins the campaign just as alpine mountaineer and Alzheimer’s disease advocate Alan Arnette successfully summitted Aconcagua in Argentina, his second climb of the 7 Summits.  Through this campaign, Alan is seeking to climb the 7 Summits, the highest peak on each continent, in order to help raise awareness of the enormous financial and personal burden Alzheimer’s places on people with the disease, their family caregivers and society.  In addition, he hopes to raise $1 million.  The funds he raises will go directly to the Cure Alzheimer’s Fund™, and now NFCA to advance Alzheimer’s research and support for family caregivers, respectively.  It is estimated that more than 5 million Americans have Alzheimer’s and approximately 10.9 million unpaid caregivers see to their daily needs.

“The NFCA’s participation in this campaign spotlights the vital and expanding role of the Alzheimer’s caregiver, which is why we are so glad they have joined this effort,” said Stef Heylen, MD, Chief Medical Officer and Head of Research and Development for Janssen Alzheimer Immunotherapy, on behalf of the Alzheimer’s Immunotherapy Program.  “Through their participation in the 7 Summits campaign, NFCA will be able to reach even more family caregivers, providing education, support and a public voice.”

Prior to Aconcagua, Alan summitted the first of the 7 Summits -- Mt. Vinson Massif, the highest peak in Antarctica -- in December.  Coming up in April, Alan is planning to summit Mount Everest, the highest peak in the world.  The Alzheimer's Immunotherapy Program of Janssen Alzheimer Immunotherapy and Pfizer Inc. is funding Alan’s climbs so that all money he raises from donations will go directly to the organizations he has selected.  You can track Alan’s progress or make a donation to one of his chosen charities by visiting www.Climb4AD.com or www.Facebook.com/Climb4AD.

“2011 marks the Year of the Caregiver, and as such, we are thrilled to join Alan in his efforts to raise awareness about Alzheimer’s and the burden it places on family caregivers,” said Suzanne Mintz, president and CEO of NFCA.  “We applaud Alan for his commitment, perseverance and tireless advocating for the AD community.”

Alzheimer’s disease is the sixth leading cause of death in the United States, with another person newly diagnosed every 70 seconds.  The burden of caring for these patients often falls to family members.  Last year, these family caregivers provided about 12.5 billion hours of unpaid care.

Alzheimer's Immunotherapy Program
The Alzheimer's Immunotherapy Program of Janssen Alzheimer Immunotherapy and Pfizer Inc. is an equal collaboration committed to researching and developing selective products for the treatment and/or prevention of neurodegenerative conditions, including Alzheimer’s disease.

The Alzheimer's Immunotherapy Program believes that it is possible to reduce the burden of disease through early intervention in the illness.  It is dedicated to delivering comprehensive and integrated solutions that help address the needs of people impacted by Alzheimer’s disease.

Its research focuses on the beta amyloid hypothesis.  Scientific evidence supports the idea that preventing the accumulation and/or promoting the removal of beta-amyloid may have the potential to slow the progression of Alzheimer’s disease and help preserve function in people with the disease.  This theory is being tested inclinical trials.
                                                                                                         
Janssen Alzheimer Immunotherapy
Janssen Alzheimer Immunotherapy is researching, developing and commercializing selective products for the treatment and/or prevention of Alzheimer’s disease.  Janssen Alzheimer Immunotherapy is based in Dublin and has R&D facilities in South San Francisco.

National Family Caregivers Association
National Family Caregivers Association (NFCA) envisions an America in which family caregivers lead full and productive lives, free from depression, pain, isolation, and financial distress.  NFCA provides family caregivers support, education, and a public voice.

Cure Alzheimer's Fund
The Cure Alzheimer's Fund is a non-profit public charity established to provide funding for targeted research into the causes of Alzheimer’s disease.  The Cure Alzheimer’s Fund exists exclusively to fund targeted research to hasten the slowing, stopping or reversing of Alzheimer’s disease.

MEDIA CONTACT:
Ellen Rose                                                                                                           
Office: 650-794-2546
Mobile: 650-491-4901
erose@janimm.com                      
____________________________

National Family Caregivers Association Supports Advocate in His Mission to Raise Awareness of the Burden of Alzheimer’s Disease

NEW YORK (February 3, 2011) – Pfizer Inc., together with its collaborator on the Alzheimer’s Immunotherapy Program, Janssen Alzheimer Immunotherapy, is pleased to announce the addition of the National Family Caregivers Association (NFCA), an organization that empowers family caregivers to act on behalf of themselves and their loved ones, as a supporter of The 7 Summits Climb for Alzheimer’s: Memories are Everything campaign.  NFCA joins the campaign just as alpine mountaineer and Alzheimer’s disease advocate Alan Arnette successfully summitted Aconcagua in Argentina, his second climb of the 7 Summits.  Through this campaign, Alan is seeking to climb the 7 Summits, the highest peak on each continent, in order to help raise awareness of the enormous financial and personal burden Alzheimer’s places on people with the disease, their family caregivers and society.  In addition, he hopes to raise $1 million.  The funds he raises will go directly to the Cure Alzheimer’s Fund™, and now NFCA to advance Alzheimer’s research and support for family caregivers, respectively.  It is estimated that more than 5 million Americans have Alzheimer’s and approximately 10.9 million unpaid caregivers see to their daily needs.

“As the number of people diagnosed with Alzheimer’s increases over the next few decades, so too will the burden of this devastating disease on family caregivers, which is why continued resources and support are essential,” said Gregory Rippon, MD, MS, Senior Director, Specialty Neuroscience, Clinical Development & Medical Affairs, Pfizer, on behalf of the Alzheimer’s Immunotherapy Program.  “We are excited that NFCA has joined this effort, as their participation expands the reach of the 7 Summits campaign to focus on this critical audience.” 

Prior to Aconcagua, Alan summitted the first of the 7 Summits -- Mt. Vinson Massif, the highest peak in Antarctica -- in December.  Coming up in April, Alan is planning to summit Mount Everest, the highest peak in the world.  The Alzheimer's Immunotherapy Program of Janssen Alzheimer Immunotherapy and Pfizer Inc. is funding Alan’s climbs so that all money he raises from donations will go directly to the organizations he has selected.  You can track Alan’s progress or make a donation to one of his chosen charities by visiting www.Climb4AD.com or www.Facebook.com/Climb4AD.

“2011 marks the Year of the Caregiver, and as such, we are thrilled to join Alan in his efforts to raise awareness about Alzheimer’s and the burden it places on family caregivers,” said Suzanne Mintz, president and CEO of NFCA.  “We applaud Alan for his commitment, perseverance and tireless advocating for the AD community.”

Alzheimer’s disease is the sixth leading cause of death in the United States, with another person newly diagnosed every 70 seconds.  The burden of caring for these patients often falls to family members.  Last year, these family caregivers provided about 12.5 billion hours of unpaid care.

Alzheimer's Immunotherapy Program
The Alzheimer's Immunotherapy Program of Janssen Alzheimer Immunotherapy and Pfizer Inc. is an equal collaboration committed to researching and developing selective products for the treatment and/or prevention of neurodegenerative conditions, including Alzheimer’s disease.

The Alzheimer's Immunotherapy Program believes that it is possible to reduce the burden of disease through early intervention in the illness.  It is dedicated to delivering comprehensive and integrated solutions that help address the needs of people impacted by Alzheimer’s disease.

Its research focuses on the beta amyloid hypothesis.  Scientific evidence supports the idea that preventing the accumulation and/or promoting the removal of beta-amyloid may have the potential to slow the progression of Alzheimer’s disease and help preserve function in people with the disease.  This theory is being tested in clinical trials.

Pfizer Inc.: Working together for a healthier world™
At Pfizer, we apply science and our global resources to improve health and well-being at every stage of life.  We strive to set the standard for quality, safety and value in the discovery, development and manufacturing of medicines for people and animals.  Our diversified global health care portfolio includes human and animal biologic and small molecule medicines and vaccines, as well as nutritional products and many of the world’s best-known consumer products.  Every day, Pfizer colleagues work across developed and emerging markets to advance wellness, prevention, treatments and cures that challenge the most feared diseases of our time.  Consistent with our responsibility as the world’s leading biopharmaceutical company, we also collaborate with health care providers, governments and local communities to support and expand access to reliable, affordable health care around the world. For more than 150 years, Pfizer has worked to make a difference for all who rely on us.  To learn more about our commitments, please visit us at www.pfizer.com.

National Family Caregivers Association
National Family Caregivers Association (NFCA) envisions an America in which family caregivers lead full and productive lives, free from depression, pain, isolation, and financial distress.  NFCA provides family caregivers support, education, and a public voice.

Cure Alzheimer's Fund
The Cure Alzheimer's Fund is a non-profit public charity established to provide funding for targeted research into the causes of Alzheimer’s disease.  The Cure Alzheimer’s Fund exists exclusively to fund targeted research to hasten the slowing, stopping or reversing of Alzheimer’s disease.

MEDIA CONTACT:
Victoria Davis
Global Media Relations         
Office: 212-733-3227
Mobile: 347-558-3455

# # #


Monday, January 24, 2011

I have a new name.

Yes thakns to you all I learned a new word.  I had to google it to find out what it meant, but none the less I like it. So i am KVECHTING, that makes me a KVECHTER. Yes a whinner, but I serve the wine, why do you not bring the cheese and crackers to the table?

Finally some of you let loose with what bothers you and I am glad, that is waht my blog is about, not only my journey and pain straight out, but you response straight out and back. No holds barred here. Do not be afraid of hurting my feelings with what you say, because I surely have no problem fighting back if it is called for.

I just want the real story about those of us in this World of Ours, told. Not by "experts", "researchers", yes "caregivers", etc. But by US!!! Yes you suffer the pains of helping us and watching us waste away to mere shadows of a one time person. Too many of those in my world are too afraid to say anything or are in denial and just do not want to tell anything.  Well we SUFFER greatly, we die many times, each day we die a little more, we forget who people are includdding our selves. I do not think you can really understand the anger and frustration of this. Sitting down to eat and you forgt how to use the fork or even what the fuck you are doing at the table. My own wife scares the shit out of me at time when she comes up to me, because at that moment, I have no idea who she it or what the hell she is doing in my house.

We do not go out much, I am afraid to leave my house or yards, because I may not return here, this is my safe place for me.

Well you all be good to yourselves.

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

Monday, January 17, 2011

What Do You Want To Hear?

As readers of this thing, I would lkei to know what it is you want to hear about from me. I feel like I have reached a point on constatnntly reapeting myself. True or not I do not know.  My wife informs me we are in 2011, well I still am back in 2009 I think, because time does not seem to have moved forward for me or I have not gone with it. Maybe that is good, you all are getting older and I am staying the same. What a horrible thought that means I have to stay where I am at. I do not like where I am at, i dont even know when someone comes or goes in my hourse or even who is here at times. Ideas, thoughts whatever from you would help.

I did write to Dr. Phil to try and get a show on those of us who suffer, not the medical or caregiver or research side, but us the Walking Dead to hear our voice, but like the answer my wife got from Oprah, silence nothing back. I guess we are not worth talking to or about. No wonder so many actually just give up and call inside not to be heard from again, I can relate to that now, not before but now I can. We are throw aways no doubt in my mind any longer. Even my friend Dr. Sivack whose blog I invade at times no longer writes me, eveb those who are with Alz Org that are supposedly friends or want my involment , nothing just the quietness of silence. But people have their own lives to live and deal with. I have grown tired and wiery, take care my friends.

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

Saturday, December 25, 2010

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

Monday, December 20, 2010

Foggy Days

Hello to al I know it has been ahwile. Lately I have been noticing that I feel more and more like I am in a fog, I am aware that I am here but I am not reallly here. A very strange feeling. It is like being lost but not. I am not sure what this means except that I feel and Lynn has noticed lately that the slope has become steeper and with my round butt I am sliding a little quciker.

The article I was in posted on my blog, had errors and I have tried to get the corrected but of course neither the writter Lillian Cox or the Editor of the Coast News has had the well less than knowing someithing nice to say the balls to contact me back.  We met with someone from the San Diego chapter of the Alz Org awhile ago about getting involved and geting us a voice, boy they are just as quiet.

They say I think it goes, "Silence is Golden", if that is the case the deafening silence I am getting from those above and from anyone outthere trying to get us a voice, my house should be sinking from the gold bars that it is loaded with. Or at least I should be able to go to Mc Donalds for dinner.

I need to go now. Take care of yourself.

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

Thursday, December 16, 2010

My Book

If you wish to see sites it can be purchased at both written and electronic go to:

http://LivingWithAlzhiemers.wordpress.com

You can also leave a review of the book should you have purchased it.

God Bless,
Joe

Friday, November 26, 2010

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.

Wednesday, November 17, 2010

Well Good Morning World! Yes it is me again you lucky people.

I have been puzzled, confused or whatever over something. You caregivers out their and even you suffers can help me with this. Ther are days that I get up and ready to take on the wolrd and my brain in on fire. The all of a sudden i am like, Robby the robot in Forbiden Planet all my circuts start to short out and I am just plain fricken out of it. I do not understand this, most of the time I kind of walk on eggs because I am not sure where I am or how I feel or what is taknig place in my brain. Have any of you seen or experienced this? It is really concerning. Kind of like here today, gone in a minute. Well I am 66 today, who would have thunk it, not me. Still a pain in the ass about things.
Food no longer intersets me either. Eat or don't eat ok by me. The food just does not hold any enticement I think that is the world anylonger. Things I loved to eat just do nothing for me. I have to be reminded now or asked about eating, not part of my list today. Oh well starting to ranble.

Take care of yourselves.

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

Friday, November 12, 2010

Who Really Speaks For Us?

Since i went to the memmory walk here, 1st one in Oceanside, CA, which had 600 walkers so they say, the question of "Who Really Speaks For Us?"  Has been runnning in my head. I listened to all the speakers and the walkers, cheering for a cure, what about the cause people? I heard how everyone was helping to care for us and the rest. But NO ONE spoke for me or the others in my world.  Where is our Voice. Certainly not with the major companies, major sports or even really the fricken media. Try as I may I cound not find anythin in our local paper The North County Times about it. But the, and you may not like this but tuff, The BOOB walk on sunday drew media and papers.  It is I think as I have felt we are throw aways. Fix them boobs, which deaths have been droping on, and I do not wish it on any woman or man (we get it to Ladies), but we have no, I repeat we have NO SURVIVORS' , THAT IS RIGHT NOT ONE! Again, WHERE IS OUR VOICE?

I am ready for the bull mail to come take your best shot at me. I can dish it out and I can take it back. But if you are going to get on my ass, do it publicly with a comment. I put out publicly and am not afraid.

I for one who suffers with this bastard of a disease, am really getting tired of everyone saying we are going forward, but yet I do not see us on the boob tube rarely. Where are the causes? Where are the cures? Where is there real working drugs?  I once offered and now I offer again a CHALLENGE to any so called researcher out there my brain to use living samples from, not mice, not dead brain material, although that may be debatable in my case, to use. I know I have been told it may leave me worse off, more demented and I may die, DAH, wath the hell is going to happen anyways.


Until my next tirade or what ever, be good to your selfs.

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

Tuesday, November 9, 2010

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

Thursday, November 4, 2010

Caregivers and Death

I was reading a discussion on Caregiver.com about people with AD & likes dying and the time it takes and how to handle it.  First I want to say that those who say celebrate the persons life are correct. To that I add do not morn for that is self serving and arrogant. Because I feel that it is only a self pitty thing, why am I alone now, they had no right, etc.

I said my good byes long ago to my family when we knew what was going on and freely talk about my passing. Quiet frankly I cannot wait. You see on this side of the fence we cannot escape any of the ravages in anyway but death, you can get relief and put us in homes how nice for you. I have in hte past expressed my feelings on these things, we are still kept silent and still put away. Well while I am alive and can I hope I promote some real thought over this home putting crap. I kind of understand, you are 78 and the only one to cae for your loved one, home may be or is the right place. My bitch is with the offspring, how would have it been when you got sick mom and dad just sent you away or sent you to other family members and they passed you on, because it casused extra time of your day to care. Think about it. I know my wife and I have been there every step of the way for our kids, sickness, catatrosphic illnesses, major accidents, arrests, drug and alcohol problesm we have seen them all but have been there, no matter how old they have gotten or how much we did not want to be involved, but they are our family and we do what families do, take care of each other.
I guess no one really hanlesd death well that remains behind, but just think of us that go ahead  of you we are set free, no more of the confusion, frustration, pain, forgettfulness, not know who or what anything or anyone is, no more diapers, rubber sheets, being hand fed or laying in bed all the time. I am wiery of the fight and now just let it work its job so that I can win in the end by passing. I reallly hate this feeling great and in control one moment and the nothing makes sense and seems to be real or knowing where the fuck I am or what I am doing.

I need to stop. Take care of yourselves.

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

PS> to those that voted I applaud you, to those that did not and could have keep you mouths shut you gave up the right to say anything. Maybe next time you will get your head out of your ass and use your right to vote.