Showing posts with label volunteers. Show all posts
Showing posts with label volunteers. Show all posts

Monday, September 19, 2011

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

Saturday, May 7, 2011

What price Alzheimer's

Many of you have lost loved ones to this disease, mothers, fathers, grandparents, friends, siblings and this list goes on. Mother's Day is tomorrow and to all Mother's long gone, still with us and to be, I wish you the happiest of times.

This is only one cost of the Disease, the losss of a loved one. Just think how we feel as we loose the loved one that we care about so greatly, ourself. Sounds selfish, but it is a reality. The other day to me it was just yesterday, because there is only today and yesterday for me, I walked into the "OFFICE", doe not everyone have to have one in their howse. A bedroom with a comuter in it, WOW. Anyway i walked in and the next i knew my wife was in helping me get up off the floor. See this 700 pound pigeon, does not remember how to fly to well. I bet i wennt down with grace, style and diginity and a thud. problem is not remembering what took place, one minute i am standing the next on the floor like a beached whale. I know this is only part of the disease and what is to come, but it is taking longer to get up and the aches take longe to leave and some now stay, they found a home. Good thing I drank heavily in my twenties, I learned how to fall and get back up. So I guess we are born we grow and start to return to our original days.
The more i look at this disease the more I feel it is auto immune in nature. I notice our Alzheimer's Organization here in the states touts the stars who have parents or sweethearts who have parents with the disease as being such brave soles and all the work they do for Alzheimer's. I say stick it up your ass you do nothing for us. At least Canada has speakers at meetings with the disease so that the true story comes out. I know I have a couple of friends up their speading the word at AD meetings by the Alzheimers Assoc. of Canada. Kudos to you folks.  Here forget it. See personal experience has shown me the nature of their commitmennt.  The San Diego Chapter, visited me the wife would remember when, it was shortly after the Walk here in Oceanside, I think. They met to discuss my book, the lady was very nice as i remember and felt that my story needed to be told and by me and that i would be of greqat service, i was even asked if i would be willing to speak and help, well I said yes. gave them books for their lending library. They would be in touch I was told, the bullshit put off statement. Well they went to the state capital for getting things done, i was asked originally if I would go, yes, however time came and pass and so did their silence. I get emails to help support them. I think not, you can have as much support from me as you have given me.  The Alzheimer's Disease Reasearch Foundation gets my help they at least are doing things.
Had to get this off my chest. It has been burning my ass for a long time now. Many good people work and volunteer for the Alz.org,, but the whole does not even come close to equalling the parts.
I have noticed lately that ai seem to be going away, that is the best way i can say it, seems like me and that around me are starting to part ways more and more each day.
I am rambling on so I will say so long for the time being.

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

Tuesday, March 8, 2011

Alzheimer's may start in liver

New Study released. Who know's. I wish i was a mouse.
They seem to have all the luck. Clicking the title should take u there.

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

Tuesday, February 8, 2011

Early Onset Alzheimers

Yesterday my physcollogsit and I discussed this topic. Generally from time of this diagnosis till time to leave is about 8 years. Check the people that have died from the HBO special and the timeline and that of Sarge Schriver diag. in 2003 just died 2011. The list goes on.

We got to talking about the time period and EOA. My opinion only is that what is called EOA is not, it is more towards the middle stages. My reasoning, which is questoinable, is most of us are told when we start to notice things going wrong, oh it is STRESS, you are just DEPRESSED, you are DISTRACTED and you know the other bullshit. It generally is years before anyone really starts to listen and connnect the dots and finally does reall testing and oh well now you have EOA. I say no, you had EOA possibly for as much as 10 years befoer those white coats figured it out. Of course you had no idea, even though you kept on saying no that is not the problem this is. But of course you did not read page 89 of the med journal of AD and the box you have to fit in to have it.

Yes we both disagreed with each other at the beginning, but since his dad died from AD, he thought back and started to understand what I was trying to say, just maybe the real deal. He is a good man, shit he has put up with me for almost 6 years, so who is the sicker one! He asked me when I first noticed things going goofin and best I could remember I was around fifty, i could not multitask without notes anymore or even handle the number of tasks that I could and it got worse and worse. Of course i had SDD syndrome, right.

What I am trying to say while I am still somwhat together is, if you feel there are reall problems going on in your head, do not allow your doctor to just push it off as the SDD syndrome. You have to fight for you period.

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

# # #


Thursday, January 20, 2011

Some GrandParent Humor Today

I received the following email from my mother-in-law. So I thought rather than being a pain in the ass today, that comes later, we would have a little humor, at least i found it so.

Have you ever  wondered what the difference is between Grandmothers  and
Grandfathers? 

Well, here it is: There was this loving  grandfather who always made a special
effort to spend time with his son's  family on weekends. Every Saturday morning
he would take his 7-year-old granddaughter out for a drive in the car for some
quality time -- just  him and his granddaughter. 

One particular Saturday, however, he had a  bad cold and really didn't feel like
being up at all. He knew his  granddaughter always looked forward to their
drives and would be  disappointed.  Luckily, his wife came to the rescue and
said that she  would take their granddaughter for the drive. When they returned,
the  little girl anxiously ran upstairs to see her grandfather who was still in
bed. "Well, did you enjoy your ride with grandma?" he asked. "Oh, yes,  PapPap,
it was really wonderful.  We didn't see a single  asshole, blind bastard,
dipshit or son of a bitch anywhere we  went!" 



Almost brings a tear to your eye, doesn't  it?



God Bless & Keep You & This Country of Ours!!!!!
joe
PS> God love grandpa's to.

Monday, August 16, 2010

Brains or Trains

I wonder sometimes if I have any brains left or if they are just trains runnnning in a circle. Things to me seem to be getting fuzzier each day. I forget mor of what I am going to do each day. Wife is up North visiting daughter and kids, I just could not take going after her 50th a week or so ago.  I found 32 good reasonss to commit homicide that day, way too much noise, movement, people, just a real grate on my brain, nerves and patience.

I am glad to see the going back and forth in comments and Lynn's posting.  We got one the other day that we discussed and both of us for diffferent reasons.  She could understand the people resenting the fact that the parents who are becoming a problem and like me, living another 5 or more years. Lynn feels that way about me at times and we both think it is normal and good to express it. You need time away from us guys to help yourselves. See I look at it that I may have to put up with those arround me hovering, checking, watching ever annoying me even for another year.  I wish they would just disappear at times. I think both sides feel this way, have to, we with Dementia are really a handfull, I think worse than trying to raise baby tripplets. See have the time I do not know what I want or what I am doing, just like a kid.

I want to say welcome to all of you that visit my blog. From Russia, US, Canada, Latvia, China, Brazil, Austrailia, etc., it boggles my brain cell.  Thank you all for visiting. I hope to be adding new resources to the list on the side soon for you all.

God Bless & Keep You and This Country of Ours (and the World)!!!!!
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