Showing posts with label alhziermers vs dementia. Show all posts
Showing posts with label alhziermers vs dementia. Show all posts

Monday, October 3, 2011

What do they know about Alzheimer's really?

I was reading best I coudl an artickle in AARP to day called: Diagnosing Alzheimer's by Katharine Greider. Interesting a lot about nothing, they know they have no tests or real meds to help us, gosh what a fricken surprise.  A Quote; "But scientists don't yet understand exactly what various results of biomarker tests mean for each patient or how they can be used to predict a patient's future. (i typed this from the article.)" Eli Lilly has a drugg Amyvid which is an injectible radioactive dye to stain amyloid deposits for use in PET Scans which may help.  quote from article: "The drugmaker says Amyvid would be for old people with mental decline wose diagnosis is uncertain." you judge that one. This is the best part of the article and only part that is truly reaal in my opinion.
"It will likely be many years before any test can predict precisely who really with get the disease, and when," says Frances, who has helped establish guidelines to iagnose mental disorders. "In the meantime, there will be lots of continued hype about progress in testing," hes says. "The best thing mos people can do is simply ignore it. Instead of worrying about Alzheimer's you should make sure to exercise you mind and body, eat well, don't drink too much, and enjoy life."

Exactly waht my neuroligist a number of years ago said to me, except she said dump the meds they are not going to stop anything. Keeep my shrink so he coulc give me the mental calming drugs and mode stabilizers I would need. And enjoy the time I had left.

Now to those who keep telling me just because you forget placing your glasses, keys, appointments, pens, etc. does not mean you have Alzheimer's. CORRECT, but when you do all these things daily, you have a fricken problem, bub.

I am now entering year 7 and the physciall parts are taking hold, no balance, bladder wants to be on self control, forgetting my meds, needing to hold the walls to walk, back brace so I am not in pain, meds increased to help with symptoms, may even have my ow Scooter Chair soon to I can go shopping and not die in the middle of the store, because I am in pain cannot walk, people just need to disapear, sweating getting confused (some fun). I truly hate it when people tell me hang in there it will be ok. Fuck it will not be ok I am dieing. That is ok, this is just not the way i planned things.

Well till next time take care of yourselves.

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

Thursday, February 17, 2011

Click on This Title

This post is from the Alz.org, forum.
click the title for the post.
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 YorkNY 10011

212.845.5627
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 31, 2011

Questions To Answer!

Yes i am back the last several days have been like living in a fog, you know where you are but cannot see the land marks. O h well such is life.
_____________________________________________
Hi Joe,
I watched both my parents succumb to Alzheimer's and the personal problems that came about because of this disease. But God is good and He supplied every need as they appeared. I have even written a book too - My Parents' Passing. I wrote it to open the eyes of those who want to know and not make the same mistakes that I made. I wrote it to help my family know should someone else in our family be diagnosed with it. I can see how a person could hide this for several years from even a loved one. Would it be in my best interest to know if I inherited this awful dementia and to be on medication? Will it slow the process down enough to make a difference? At what point does it not help? Lord please bless us with a cure. -Earlene
__________________________________________________________________
I pulled Earlene's comment from one of my posts, I feel the questions assked a valid. Earlene I will give you my take and hopefully others will comment.
Is it better to know if you have inheretited this disease or one step farther will get it?
I think not why worry your liffe away about something you have no control over, inspite of all the experts. Live you life, laugh, have fun, eat right, get the sleep you need. Go to the Dr. when needed, but make him or her answer as to why they came up with the aliment why the tests are necessary and what do theey reallly mean. Remember this is your life.
Knowing will not slow down anything, hell they do not know what causes it, plenty of theories and studies all proving nothing. All the knowledge that you may or may not get it and worring about it the point the point where all this knowwing and worring and wasting you life over maybe getting it ends when you get it if you do. So let it go and live your life.
Remember The Alzheimer's Research Foundation, says thi:
Zero know Causes
Zero know Cures
Zero medicines to reall help, i agree.
Pleas rest your brain and live for today, tomorrow will take care of itself.

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

PS> Earlene should you join this family of ours we will welcome you with open arms, the 26 million of us world wide that have it would be your family, just think 26 million people that woudl share a bond with you and love you, what a blessing.

Friday, December 3, 2010

Once There Were Seven - Now??????

Many of you may remember the HBO special, specifically "Memory The Loss Tapes".  Both my wife and I have tried to find out how each of the perssons in the film were doing. However calling and emailing HBO brought not even a response of any kind jus SILENCE. I know my wife will hit me upside the head for this, but I guess they got their awards and that is that. I met these folks and they were oh so nice and greatfull for each of us letting them into our lives. It is not the actual people that filmed the part I was in that I am miffed at (being politically correct here), but those at the top who do not seem to really care beyond their fuckin awards, sorry wife but I had to let it out.


The film had the following folks in it:  Bessie Knapmiller, Fannie Davis, Yolanda Santomartino, Josephine Mickow, Cliff Hoffman, Woody Giest and of course me.


Theough research my wife was able to find out most of the information we wanted to know. Remember we all had been diagnosed for about the same number of years:
Bessie Knapmiller  set free 2/2010 she won!
Fannie Davis: unable to find out
Yolanda Santomartino: unable to find out, but her age and condition tell me she may not be with us anymore.
Josephine Mickow: set free 10/2009 she won!
Cliff Hoffman: set free April or May of 2008 before filming complete, he won!
Woody Giest: set free 3/2010 (believe this is correct) he won!
Joseph Potocny (ME): well your still stuck with me.


I have mxied emotions about my comrades, as I do not like to see anyone die, I am also happy for thsoe who won and beat this bastardly disease. I am also jealous that I am not with them. As for Fannie and Yolanda, I pray the Lord has you in his arms and comforting you.


I ask the families of those past on their permission to post a picture on my memory page of their loved ones and that they send me one:  jolynn1@cox.net


This is for me a sad day of posting. Take care of yourselves.


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

Tuesday, September 21, 2010

What is in YOUR Refrigerator?

A few years ago we had the kitcehn remodeled. New Honey Oak Cabinets, with black nobs with dark cherry wood centers, the walls in a chocolate color, and a Brazilian Cherry Hardwood Floor, Black Stove & Microwave and a Black & Stainless Steel Dishwasher.  Then there sat6 are very old but working fine White Refrigerator. So for years you know who has been bitching for one to match, yes me. Well we just purchased a new one. Reasons, much more energy efficient then are 15 year old one, quieter, it has crushed ice a must for me, but most importantly it is BLACK and matches the decor. Happy am I, yes, except for opening it.

You see the last one the bottom drawers were solid and you could not see what was in them. This one they are CLEAR and you see everything. So what you say, well let me tell you there are creatures in those bins. I open the door and they stare at me, I know they want me. I cannot look at them, sill y yess, but that is how my brain reacts to them.Lynn just says Joe, get over yourself and deal with it. Not so simple, things like this are creeping into my life now and I can only wonder what lies ahead. The part of my brain that still understands logic laughs at me, but there is that growing part that sees and witnesses strange things and seems to have more control. The stuff in thre drawers seems to have eyes and moves when I look at it, not anyone else, just me and that is what really counts is how I feel about it.Well I guess I will just have to outfit myself for hunting when I go to the refrig that way I am prepaired for any attack.

Thank you all for being here for me.

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


PS: PLEASE NOTE IN MEMORY OF PHOTOS NOW HAVE THEIR OWN PAGE!!!!!!!!

Tuesday, September 14, 2010

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

Tuesday, August 31, 2010

This Comment Deserves Posting Status

The following comment deserves to be used as a post. This is what I have tried to get others that were invited as posters to do. I share my side, you share yours.

Anonymous has left a new comment on your post "About the parboiling":

Good morning Lynn and Joe. I can certainly relate to this situation. Unfortunately, memory is not the only effect of this disease but also logic,reasoning, and EGO are noticably effected. We have one and a half acres of lawn which we have a good sized tractor for mowing. My husband refuses to allow me to mow with the tractor and always says that I wouldn't be able to handle it. The truth is I used to do the mowing with the tractor but he claims that he doesn't remember that I ever did. The truth has come out that he really feels it is the one thing he still does and doesn't want me taking over it. We have fought and fought over this over recent years now and I can't seem to win. His abilities to maneuver and control the tractor are noticably impared but I still cannot get him to concede to allow me to do the mowing. He is aware that he has problems with doing the mowing and procrastinates just as long as he possibly can. The best plan that I have come up with is to use the hand mower to cut the two areas that are potentially dangerous with the tractor. When I first started doing this he even continued to take the tractor over the same areas that I had already mowed just because he resented the idea that I felt it was something he could no longer do. I just can't seem to get across to him that just having him safe and uninjured by my side day after day is so much more important to me than him proving to himself that he can still do certain things. I think we could all benefit from hearing from others who have faced these challenges and how they were able to successfully navigate through these types of situations. Thank God Joe's experience was his parboiled fanny and not a fall from the roof! I pray that my husband's experience will only be damage to his tractor and not to his body.
May God bless us and guide us through our journey of life, whatever it brings our way!



Posted by Anonymous to Living with Alzhiemers' at 6:50 AM



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

Wednesday, August 25, 2010

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

Friday, August 6, 2010

Asking for Help & New Link Added.

I have added a new link, Nursing Home Abuse, for those of you that may have problems with a nursing home or need help in finding and how to look for one.  Do hope that this will be of help.

I am glad to see the comments of help going back and forth, this will help you I think and hope. This is what this blog has been waiting for.  Out of the avg of 179 people that visit each day, I think some of you have great wisdom to offer each other. For me, getting better is not taking place, getting worse is and will till it kills me.

You all know I just love the medical profession and researchers with great and profound moranity. I got a mailer the other day, Alhzeimers cured and the cause, medical book supposedly. AD caused by lack of insulin in other words diabetes of the brain. The gist is that extra insulin can halt or even reverse the damage. A lot of quacks out there, amazing that this one dr. has found this out and has not shared it with the medical community but is with the world.  I think I will go have to cokes so the caffine stops my AD.

I need some help or at least to know if any one with AD out there or caregivers have noticed this happening:
For a cpl of months now I have been experienncing pain in the brain, this is not a headache or migrane as one knows them to be.  It is like someone with really big hands is reachin inside my skull and just squeezing the hell out of my one brain cell, trying to make it smaller. This can last for hours to days, even longer once it is gone I notice that more of me is gone.  I guess the details I follow because of my employment was in the field of computers and data gathering and details, still with me to a degree. Have talke to my shrink and pyhsycologist about this and get a dumb look. So you folks my family if you have any info on this I sure would like to know about it, I feel alone enough now without being the only one with this bull shit.

Friday, July 23, 2010

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

Tuesday, July 13, 2010

I greet you this day not really knowing why. It seems that the days are starting to have little meaning anymore. I try to keep a sense of humor about things, but there is nothing humorous about what is happening to me or those around me. I find myself staring off into space or just at nothign these days nore amd more. Things seem to mean little anymore to me and I just do not know how to handle these feeelings and moods. Things keep slipping farther and farther away from me.

I have tried to make this blog as time has gone by a place for meeting and exchangin thoughts and felings on dementia in general. I gave the site a chat room for a year that I paaid for open 24/7 for whoever wanted to talk not just to me but to others a failure. I opened a direct chat line to communicate whichcost me over$80 a month so we could talk, 5 people, a failure. I invited over 25 people to blog here because of their involvement with dementia, that has been a failure, I even set up Yahoo Messenger for instant chatting that too went down the tubes, I even have tried skype without any success. Comments I have gotten, emails I have gotten, but I guess my expectations (premeditated resentments) should not have been. I have removed all of the about except comments and email.

I am trying to give u articles as I find them that maybe of interest. I have a feeling that will be of no avail. Bitter yes I am, angry and pissed, yes, at those who come and cannot even take time to comment yes, but most of all at ME, for especting and planning and most of all trying to plan the outcome.This fricken disease plays a lot of games with your head and sometimes I am not even sure of what I am writting, minutes from now I will forget and I guess for me that is ok. Keeping my angry under anytype of control is getting difficult, increase in meds is not helping, well so much for my bitching, like most things it will get me nowhere fast.

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

Saturday, June 12, 2010

A Call For Volunteers!!!!!!

Hello,

I hope you all had a great holiday weekend! I wanted to get in touch to let you know about an Alzheimer's Disease research study and invite you to share this with Living With Alzheimer's blog readers.

Have you or a loved one ever experienced what it is like to be unable to recall things which were once so simple to remember? If so, you may know how devastating the effects of Alzheimer’s disease (AD) can be. An estimated 5.3 million people in the United States have Alzheimer’s, and every 70 seconds another person develops this disease! I am contacting you today on behalf of the Alzheimer’s Disease Cooperative Study (ADCS)  to raise awareness about AD and to encourage otherwise healthy adults with early complaints of memory problems to participate in the Alzheimer’s Disease Neuroimaging Initiative Grand Opportunity (ADNI GO). ADNI GO will build on the unprecedented momentum and success of the Alzheimer’s Disease Neuroimaging Initiative (ADNI), a landmark study to find more sensitive and accurate methods to detect AD at earlier stages and track its progress through biomarkers.

By being able to recognize changes in the brain, scientists hope to treat memory loss and other symptoms of AD before they appear, but the only way to recognize what these changes are and learn more about who is at risk is through the participation of volunteers. “We cannot end this terrible disease unless we know more about it,” says Dr. Paul Aisen, M.D., director of the Alzheimer’s Disease Cooperative Study (ADCS). “That is where the amazing volunteers, their friends and their families can make the difference in our success.”

Dr. Maya Angelou - the eminent poet, author, educator, historian and professor at Wake Forest University - is working with researchers to ask you and your loved ones to be part of the ADNI GO study that may help bring us one step closer to finding a cure. Click here to hear from Dr. Maya Angelou.

If you, a friend, or a family member is experiencing early signs of memory loss, you may be eligible to participate in this groundbreaking ADNI GO study. Please visit http://adcs.org/Studies/ImagineADNI.aspx or call the Alzheimer’s Disease Education and Referral Center at 1-800-438-4380 for more information on study sites in your area. I invite you to share this information with your blog readers to help shed light on this devastating disease, and encourage participation in ADNI GO.

Thank you for your time and please feel free to get in touch with any questions.

Sincerely,
Diana
 
Diana Bakowski
i-Blitz Interactive - Powered by WestGlen
1430 Broadway, New York, NY 10018
212.704.9134
 

Sunday, May 23, 2010

Is There Sex After Dementia?

Yes if you are a rabbit.  See all other tests are done on lab mice, so if they do not have it you cannot, because according to all the people with Paper Hanging Degrees (PHDs), mice and us are very much alike. I have often wondered why I had four feet, a long tail and grey fur, how stupid of me.

OK this is a serious question. I cannot speak for anyone but myself. For quite awhile the answer was NO. It did not work and my brain did not stay with it and still does not. I am allergic to the pills, I am not having rods stuck in my pride and joy, nor having a pump put in it or on it.  But guess what there are shots. They use, let me get this right, vascular dilators, and have nothing to do with your sex drive or lack of it. This is man side only, sorry ladies. You administer the shot in the right or left side of uncle willie only. Not on the top, bottom, tip, or like stupid here in a vein they burst and hurt. But when done with accurate precision there is no pain, you may sweat a lot the first couple of times, but really no pain. The bugger can remain erect for sometime, so dosage has to be adjusted. One lasted almost 10 hours, wife was worried I was not, gosh it was nice to see my old friend again. Ice packs finally killed it. Notice using spell check, want to get this one right.

So YES there is SEX after Dementia. If you want to take the steps and can remember why you have these needles and stuff in the refrigerator to begin with. Thank god my wife remembers, because I am truly getting more messed up upstairs than you know, it is taking it's toll on me, conversations suck, I loose time, I cannot get out what I want to say without my tongue getting in the way, wife has learned dementiaese, new form of speaking.

Well that is all for now, more the next time whenever that is.

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

LEGAL CRAP: The views expressed here are the views of the poster. They are not meant in any way fashion or shape to be medical advice or suggestive in anyway as how to improve your sex life, nor do they represent any deceased or living persons (except the poster), and no animals were injured in the writing of this post. Seek medical advice before trying any sexual enhancing means and be sure you are healthy enough for sex. Had to say this or I would get sued and somebody would win possession of my Alzheimer's and FTD, the lucky SOB.

Tuesday, May 18, 2010

I Applaud The Younger

So I am late getting to this, what the hell my fingers needed to be dusted off. What follows are a couple of emails that I want to post, one with full permission, the other not so identity will be with held from that one.


My name is Jordyn and I am twenty years old studying occupational therapy.  My professor had us watch the HBO Living with Alzheimer's documentary for my class, functioning of the older adult.  I just wanted to let you know that I really respect you for opening up your life to the world and writing so freely in your blogs.  How great is it that people of all ages follow your blog!  People from 15 years old to 100 years old are reading your story and I think that is truly amazing.  Hearing you say that your life didn't matter in the great scheme of things broke my heart...I just wanted to let you know that your life does mean something and I hope to follow your blogs from now into the future.  It's a wonderful thing you're doing.  Have a great day!  

Sincerely,

Jordyn
Hi Joe,

I am so excited that you e-mailed me back! I would be honored if you posted my comment. I actually just found out today that I was accepted into my Occupational Therapy program at Western Michigan University and I plan to work with older adults in my future career. I hope you are your family are doing well. I will keep you in my prayers. Thank you so much for e-mailing me back.

Sincerely,
Jordyn Bell
Hey Joe! 

I saw you on the Swedish Channel 2 today! I heard
you talking about your illness and I feel for you thou I am only 18
years old. I hope that you can have a wonderful life and be happy all
your waken time with your loved ones. God knows you deserve it!

Greetings from Sweden!
Dear Joe
I continue to be thankful for your help in understanding
what my dad went through as we lost him to AD. Although he no longer
knows me when he sees me, he often talks about his daughter and has
wonderful memories of our time together. Although I miss my dad
terribly it is some comfort that I was able to give him memories of
being loved and appreciated. I pray those memories of time with your
wife and family will remain. And that you will continue to find days
when you are with us all. Take care
These are emails from younger people, those that are coming up the line to care for those that will follow me and are caring. This is what keeps me posting knowing that just maybe, just maybe, we are reaching people and someday maybe just by complete accident one of these and the others in Brazil, Sweden, Chile, Argentina, Australia and other places that have writen by accident just may find out why this disease is. I am not talking a cure or a medicine that MAY SLOW things down, but what really causes this.  Then and only then will the real breakthroughs come and not before. I applaud you young folks, just for your interest not to mention the course you are setting for yourselves. I WELCOME YOU TO MY WORLD.
God Bless & Keep You and This Country of Ours!
joe
PS. To my friend Dr. Joe, I am a dumb SOB, ask those who really know me, God Bless and Keep You my Friend.

Thursday, May 13, 2010

No Title

The las few days have beeen really rotten. I have been confused, frustrated and a pure asshole. I have hurt my wife, not physically. But through being just a complete moron and ass and I cannot explain why.

I need ot openly appologize to her, just doing it directly has not been enough for me, I have to share it with another human being and my God for me to be free from it.

I am afraid this is a sign of things to come, havig real problems with conversations, remembering things, I just zone out and get really confused over stuff.  It is no wonder what I did really got to Lynn, she has so much to put up with me now, not to mention the prior 30+ years. I feel myself slipping more each day, so far I can for the most part notice it, but there are days I have no idea what is what. So I leave you for now, tomorrow if wonder lust here remembers I have some emails to post, that give hope to My World that there will be otherss to watch over us as we wear the current ones out.

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

Friday, May 7, 2010

Hope You Enjoy

First let me apologize for what may apppear on the slideshow, it comes directly from Amazon.com, their book section. You can click on any picture and go there and then if you are an amazon customer you can go shop till your heart is content. One warning once you leave amazon, you get me again.

I have added my favorite song to the site which starts attomatically, if you do not want to list to it, just click the button on the audiopal gagett.  But I do hope you enjoy it as I do.

Thanks for being there for me.

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

PS. Hey you contributors how about it, some words please?

Thursday, May 6, 2010

Last Night

Last night I found myself in very difficult and not likeable sitution.  It was a rough day for me as it was. We sat down for dinner and I put my food on my plate and completely froze. I had no idea what I was doing or what to do, my wife tired to help put I just told her leave me, she put my fork in my hand and it just fel from it, I was in a state of, in betweenness, between here and there. I finally started eating but with my fingers and slowly got back to where I should be. I am about 4 or so years into this and it is taking hold now as it seems to do about this time.

Now I am a beginning to become really concerned and not so humorous, but life will go on and so will I. I guess that line of no return is getting closer and sneakier about things.

Well that is it for now from: us here in Oceanside, CA.

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

Wednesday, May 5, 2010

From A Friend

Those of u that follow me know I love jokes about my condition, most are so true and funny. The one tha follows as many I got from a good friend who brightens my day often. Some may get offended but to damn bad, sit and think in through it is funny, our gov. would make this suggestion.

The phone rings and the lady of the house answers, "Hello."
''Mrs. Sanders, please"..
''Speaking."
''Mrs. Sanders, this is Doctor Jones at Saint AgnesLaboratory. When your husband's doctor sent his biopsy to the lab last week, a biopsy from another Mr. Sanders arrived as well."
"We are now uncertain which one belongs to your husband.. Frankly, either way the results are not too good."
''What do you mean?" Mrs. Sanders asks nervously.
"Well, one of the specimens tested positive for Alzheimer's and the other one tested positive for HIV. We can't tell which is which."
''That's dreadful! Can you do the test again?" questioned Mrs. Sanders.
"Normally we can, but Medicare will only pay for these expensive tests one time."
''Well, what am I supposed to do now?''
The folks at Medicare recommend that you drop your husband off somewhere in the middle of town. If he finds his way home, don't sleep with him."



see I would get lost.


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

Sunday, May 2, 2010

It Is May

Just in case you wer not aware it is May. I know the calendar and my computer tell me so and they would not lie to me. Well maybe they would cannot trust them buggers.  At least my brain doesn't, it really does not anylonger link days weeks or months together, let alone years.

According to the wife I have developed my own language, not heard on this Earth is billions of years. It seems that when I cannot get out what I want to say, let alone remembber what it is, I express myself in sort of a babble type lanugaggge. She seems to understand me, I sure the hell don't, I wonder who has the problem. Her or me?  Since she can remember days, what to do and what she is talking about, she has the problem, those type of people do not live in my World. What the title has to do with this is beyond my mind. Sounded good.

Well we got some new young koi, will see how they do. I have to do water changes on the ponds, and I do not want to, it is such a pain in the ass. I guess the fishes like it, but not one has given me a fin to shake and say thank you.  They remind me of gov. officials take it, shove it up my butt and not even a kiss. Yes I am in a mood today, have been for awhile, never kno when they will come or go, seem to stay alot longer these days.

Take care, who knows i MAY see you soon.  There that is why the title. If you believe that your brain is as blue as mine is.

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