It is estimated that there are about 400,000 of us in the U.S. with Early or Younger Onset Alzheimer's Disease (EOAD or YOAD) or related dementias. No one knows the real number since many are closeted for a variety of reasons (stigma, embarrassment, job security, lack of adequate disability insurance, fear of loss of friends and family, lack of caregiver support or resources, etc.). I am very fortunate to have the necessary support and resources, and thus feel a responsibility to speak on behalf of those who, for whatever reason, cannot.
So many with EOAD need support and help now! Not in 2025 (per false promise of the National Alzheimer's Project Act) but right now. Where is the promise for those living with the disease? Where is the commitment to those family caregivers who sacrifice their lives for their loved ones? How many people do you know who work hard every day without ever getting a day off...for free? I'm not against funding research (although much of it lacks direction and nearly every drug trial for Alzheimer's fails), but where are the funds for those with years of life with dementia ahead of them?
The cost of dementia care in both dollars and human currency are high! Spouses and children are often ignoring their own lives and wellbeing for their loved ones with dementia.
So yes, the toll is huge. The question is how are we going to pay it?
Doug Whitney should have died years ago. The 65-year-old resident of Port Orchard, Wash., has a devastating gene mutation that — according to the medical literature — causes early onset Alzheimer’s disease in everyone who inherits it.
The mutation killed Mr. Whitney’s mother and nine of her 13 siblings, and it killed Mr. Whitney’s older brother. Every one of them began showing symptoms when they were in their 40s. Most died by their mid-50s. In the next generation, six cousins died of early onset Alzheimer’s, and two others are in the final stages of the disease. One of his cousin’s children also has Alzheimer’s.
But Mr. Whitney has somehow escaped that fate. His memory is intact, and he has no signs of Alzheimer’s disease. Researchers want to find out why. They suspect he has another gene mutation that somehow protects him from the horrific Alzheimer’s gene mutation, or that at least substantially delays the disease’s onset.
So Mr. Whitney has become Exhibit A in a new direction in geneticsresearch. After years of looking for mutations that cause diseases, investigators are now searching for those that prevent them.
By understanding how protective mutations work, they hope to develop drugs that mimic them and protect everyone.
The new approach is turning genetics research on its head, said Eric E. Schadt, director of the Icahn Institute, a medical research institute at Mount Sinai in New York.
“Instead of trying to fix things that are broken let’s look at people where things are broken but nature finds way around it,” he explained.
In recent years, a few astounding protective gene mutations have been discovered, pretty much by accident. One prevents H.I.V. from entering cells and another enormously reduces the amount of LDL cholesterol, the dangerous kind, that people make. Both led to drugs. The AIDS drug is a mainstay of treatment, and the cholesterol drug is in the final stages of testing.
Researchers, using systematic searches of genetic databases, also found alterations in some genes that partially protect from diseases like heart disease, osteoporosis, Type 2 diabetes and Alzheimer’s.
But now some are starting a more ambitious project — a search for mutations that provide complete protection.
It may sound obvious — why not look for people who have a genetic resistance to a disease? After all, everyone knows families that never seem to get common diseases like cancer or heart disease or osteoporosis. Genes might well be involved.
But the trick is to figure out if disease resistance is from a good gene mutation or a good environment or simply good luck, defying the odds when a disease is likely but not inevitable.
And if there is a good gene mutation involved, searching for it among the 20,000 human genes can be daunting. It is easier to find mutations that cause diseases — those appear to be many times more common.
It is only now, with fast and inexpensive methods of sequencing DNA and with massive and ever-growing databases of study subjects whose genomes have been sequenced, that it has become possible to seriously contemplate for a rarely good genes.
The unprecedented effort has barely begun. One attempt, being led by Dr. Schadt and Dr. Stephen H. Friend, director of Sage Bionetworks, a nonprofit research organization based in Seattle, began because the two scientists had become frustrated with the failures of drug development.
Dr. Friend had worked in academia — M.I.T. and Harvard — then founded a biotechnology company, Rosetta Inpharmatics, and later helped run the cancer drug discovery effort at Merck. He began each new position feeling optimistic. More and more was being discovered about disease-causing genes. “I thought we should be able to develop drugs,” he said.
But all too often disease-causing mutations destroy or disable genes, and drugs would have to restore what was lost, which can be difficult.
So Dr. Friend and Dr. Schadt decided to flip it around and search for a good gene mutation that counteracts the bad and — in an easier process — mimic that with a drug.
They gave their plan a name, The Resilience Project, and decided to search databases that held genetic and clinical information, looking for healthy people with mutations for fatal diseases that strike early in life. If the people had lived far past the age when the disease should have appeared, they assumed they might have a lucky good gene mutation that blocked the bad.Now, a year later, “we are in this interesting place between excited and frustrated,” Dr. Friend says. They analyzed data from over 500,000 people and found 20 who seem to be protected from a fatal disease. But because of privacy issues there were no names attached to the data.
Four of the subjects are in China. Dr. Schadt and Dr. Friend are trying to find a way to contact them, but “it is very difficult,” Dr. Schadt said.
Dr. Friend and Dr. Schadt are now looking at other databases that might make it easier to contact subjects, but also decided they need to try different approaches. One will be to simply ask healthy people to let them sequence their DNA, putting out the word that they are looking for volunteers, perhaps hundreds of thousands of them. People who agreed would be contacted only if they appeared to be protected from a fatal disease.
Another is to contact researchers studying extended families with a severe genetic disease to see if they came across anyone who seemed protected. That approach appeared to be a long shot — the number of people in such studies is limited, and if there had been anyone who was protected, wouldn’t the researchers have noticed and published their story?
But when they contacted researchers at Washington University, who were studying families with a gene, presenilin, that causes early Alzheimer’s, they discovered Doug Whitney.
He certainly is unusual, researchers agree. He could, of course, still get Alzheimer’s, but it would have been substantially delayed.
Mr. Whitney had been waiting for Alzheimer’s symptoms, starting when he turned 40. He knew he had a 50-50 chance of inheriting the Alzheimer’s mutation. But year after year went by and nothing happened.
In 2011, he joined a study at Washington University in St. Louis, led by Dr. Randall Bateman, that recruited people from families with an early onset Alzheimer’s gene mutation. Mr. Whitney had finally concluded he did not have the gene mutation — he was 61, after all, and his memory and thinking were fine. On May 31, 2011, his 62nd birthday, he decided to have the genetic test. The result came back the next month. He had the gene.
But now everything has changed again. Dr. Bateman is studying Mr. Whitney. So too is Dr. Thomas Bird, a neurogeneticist at the University of Washington. Dr. Friend and Dr. Schadt have contacted him too.
Mr. Whitney is happy to help. He has just retired and when people ask what he will do now, he has a new reply: “My job is to help them figure out Alzheimer’s. I will do what I can to make it happen.”
Alzheimer’s disease is a degenerative neurological condition that results in progressive cognitive decline. The first symptom of Alzheimer’s is short-term memory loss, which becomes more pronounced as the disease worsens. Eventually, Alzheimer’s disease affects all aspects of an individual's life, such as speech, problem solving, recognition abilities, and behavior. In the late stage of Alzheimer’s, an individual's symptoms might include the inability to recognize family members, lack of cognitive abilities, incontinence, an inability to even feed oneself, and even an inability to walk. Treatment options include medications and other therapies to improve quality of life and possibly slow the progression of the disease.
Disability for Alzheimer's Disease
Can one win Social Security disability or SSI disability benefits on the basis of Alzheimer’s? Yes, depending on the stage of the disease. The disability listing that Social Security uses to evaluate the severity of Alzheimer's disease (and other forms of dementia) is the listing for Organic Mental Disorders. To meet the requirements of this disability listing, the applicant must prove that he or she has one of the following:
memory problems, the inability to remember either new information or past events
disorientation as to place and time, and/or
disturbances in mood or temperament or changes in personality.
These problems must result in a severe problems with at least two of the following:
tasks of daily living (for example, shopping, cooking, taking the bus, and personal hygiene)
getting along with others
focusing on and completing tasks, or
recurring episodes of decompensation (periods of time with increased memory loss, disorientation, or personality issues).
Expedited Processing for Early-Onset Alzheimer's Disease
Those who have been diagnosed with early-onset Alzheimer's disease (when symptoms appear before age 65) are usually the only individuals in need of disability benefits. That's because those over 65 are usually eligible for either Social Security retirement benefits or SSI benefits, without needing to be found disabled. (However, applicants between 62 and 70 can choose to apply for Social Security disability benefits rather than taking Social Security retirement. Read our article about applying for disability when you're over 65 for more information.)
Fortunately, Social Security recently added early-onset Alzheimer's disease to the list of Compassionate Allowance conditions, meaning that the agency will fast-track the processing of the disability application so that applicants with Alzheimer's don't needlessly have to go through the hassle of a denial and appeal as their symptoms get worse. If you are helping someone apply for Social Security disability benefits, be sure to note on the application, or tell the Social Security field rep, that the applicant qualifies for Compassionate Allowance treatment and that the exact diagnosis is "early-onset Alzheimer's disease."
Applying for Disability for Alzheimer's
To help someone apply for disability, you can call 800-772-1213 to set up an appointment to submit an application for SSI or SSDI through your local SSA office. If you’re helping someone to apply for SSDI only, you can do so online at ssa.gov. In your application, include how the applicant's dementia is affecting his or her ability to take care of daily needs such as hygiene, food preparation, grocery shopping, and communication.
If the applicant has physical problems as well, or other mental problems such as depression, include these on the application. Even if a mental impairment isn't yet severe enough to qualify on its own, sometimes together two or three impairments can qualify for disability. (See our article on multiple disabilities for more information.)
This article is originally posted here: http://www.disabilitysecrets.com/conditions-page-2-57.html
I re-posted the whole article here because I don't ant to lose this information. Full credit belongs to that website.
Actor Seth Rogen gives his opening statement before a Senate hearing on Alzheimer's Research. From C-SPAN3 coverage, watch the complete hearing here: http://cs.pn/1c8QeoB #EndALZ
NASHVILLE, Tenn. -- Glen Campbell's Alzheimer's disease has progressed too far to allow him to continue touring.
Instead, he'll spend his 77th birthday on Monday in Washington as an advocate for Alzheimer's research. The trip includes a fundraising dinner for the Alzheimer's Association and a visit to Capitol Hill, where he'll visit the Senate.
Alzheimer's has robbed Campbell of many of his best memories, gained over a lifetime as an entertainment icon who was a pop star, a groundbreaking session musician, an actor and TV variety show host. But it hasn't taken everything.
Campbell will release a new album, "See You There," on July 30. It's a reimagining of some of his most popular songs, recorded by Julian Raymond during the same sessions that produced Campbell's last studio album of all new material, 2011's "Ghost on the Canvas."
The album offers new versions of his biggest hits like "Wichita Lineman," "By the Time I Get to Phoenix," "Rhinestone Cowboy" and "Hey Little One."
In a brief interview, Campbell said of the songs: "Oh, they're great. Those are great."
His wife, Kim Campbell, says her husband still occasionally lays down vocal tracks in the studio but the disease has progressed too far to allow him to continue touring, something the family and Campbell's management left open when he wrapped up his successful goodbye world tour last year.
"Glen still wants to record, but it's just a matter of if he's able to," Kim Campbell said. "It just gets more and more difficult for him all the time."
He remains healthy and vigorous and continues to play golf. His family invites musicians over to the house from time to time – songwriter Jimmy Webb, who wrote some of Campbell's most iconic hits, visited with his family over the weekend – and Campbell joins in on jam sessions, playing the guitar as if the progressive, irreversible neurological disorder has yet to touch his muscle memory.
"We're trying to live our lives and stay out there and socialize as much as we can as long as we can," she said. "The other night we went to see Merle Haggard and hung out with Toby Keith on his bus. ... Everybody played different songs and had a great time. So we're still out there trying to do that kind of stuff. But eventually we might not be able to do that."
Surfdog Records owner Dave Kaplan says "See You There" is meant to feel like sitting next to Campbell in the living room, the way he was introduced to him on "The Goodtime Hour." The singer's voice has changed enough with age that the songs take on a new life. Kaplan took Raymond's vocal recordings and surrounded them with music meant to leave lots of space for the singer's voice.
"I was immediately struck that they were kind of intimate and they definitely shook your spine," Kaplan said. "They were haunting and stunning and had this new intimacy in a way I hadn't heard these songs."
It was hearing Campbell sing "Hey Little One," with its simple opening, that convinced Kaplan it was OK to mess with the perfection of the originals.
"You just don't hear that on planet Earth," he said. "You don't just hear that. That sealed the deal in three words."
Original Post from:
http://www.today.com/health/country-star-glen-campbells-battle-alzheimers-music-remains-man-2D80201251
