Walk To End Alzheimer's on Maui

My Vision For Walk To End Alzheimer's on Maui

Former Physician Takes Action in the Face of Alzheimer's

Dr. Dewayne Nash has a family history of Alzheimer’s. He knew he was more likely to get the disease than the general population. But he wasn’t thinking about himself when he volunteered for a study to detect Alzheimer’s as early as possible. What he learned was the devastating news that he was already developing the disease. But even as he retired from 25 years as a family doctor, Dr. Nash still wanted to improve the health of others. The University of Texas Southwestern interviewed Dr. Nash about the work he continues to do with Alzheimer’s patients. Former Physician Takes Action emphasizes the value of early diagnosis and the human need for feeling useful for as long as possible.




Here is an Updated Article on Dr. Nash, the Organic Green Doctor.
More links where you can find him:
Organic Green Doctor Facebook Page
Organic Green Doctor Blog

Alzheimer's Discovery With Professor Julie Williams at Cardiff University

Images of dementia: Richard Frackowiak at TEDxCHUV

Magnetic resonance images are revolutionizing dementia diagnosis because of the use of computers for their analysis. The brain degeneration that causes failure of memory can be detected before symptoms arise, which raises new perspectives for treatment.

Richard Frackowiak is head of the Department of Clinical Neurosciences at UNIL--CHUV. His interest is in human brain structure and function relationships in health and disease. He has won the Ipsen, Wilhelm Feldberg and Klaus Joachim Zulch prizes. Formerly Foundation Professor of Cognitive Neurology at University College London, Director of the Department of Cognitive Studies at the Ecole Normale Supérieure Paris and Vice-Provost of UCL., he founded the Wellcome Department of Imaging Neuroscience (FIL) in 1994. MA and MD Cambridge, DSc London University, he has an honorary doctorate from Liege University and is a Fellow of the Academies of Medical Sciences of the UK, France, Belgium and Europe and a foreign associate of the Institute of Medicine USA. He is also scientific advisor to the Director-General of Inserm.

Source: Originally published on Jun 23, 2012 on https://www.youtube.com/watch?v=EBVQYZJzzos

About TEDx:
In the spirit of ideas worth spreading, TEDx is a program of local, self-organized events that bring people together to share a TED-like experience. At a TEDx event, TEDTalks video and live speakers combine to spark deep discussion and connection in a small group. These local, self-organized events are branded TEDx, where x = independently organized TED event. The TED Conference provides general guidance for the TEDx program, but individual TEDx events are self-organized.* (*Subject to certain rules and regulations)

Alzheimer's Association Alzheimer's Disease Facts and Figures 2014

What Young People Can Do To Prevent Alzheimer's

Max Lugavere isn't at an age where one usually starts worrying about Alzheimer's. But after watching his mother get diagnosed with dementia, he committed to lifestyle habits that may help ward off the neurological disorder in the future -- and he's hoping to convince other young people to do the same.

I am glad to see he is getting a lot of support on his KICKSTARTER campaign to create a film that for Alzheimer's Awareness and Possible Prevention.

Remembering Nanay - Feb. 13th is her Birthday!

My last visit in the Philippines that Nanay was alive ...

I am glad I visited them than year ...

Tatay and Nanay's last visit on Maui ...

I am glad they got to meet and spend time with their grandkids Gardner and Noelle

You Are My Sunshine - Great Tribute to Grandma With Alzheimer's

Moe about this song and singer on: http://www.cbs8.com/story/28043264/whirlpool-brand-and-award-winning-artist-hunter-hayes-reveal-care-is-musical-contest-winners-performance-in-national-ad

Young Daughter Faces Early Onset Alzheimer's: COLD HANDS WARM HEART

Purple Lilikoi - Activist to End Alzhiemer's

People say "when life gives you a lemon, make lemonade out of it". I say "why make just plain lemonade? add some passion fruit and make lilikoi flavored lemonade".

Aloha, my name is Liza Pierce.  I am an activist on the fight to end Alzheimer's. I am an advocate to find a cure to this horrible disease. The color of my lemonade is purple. What color is your lemonade?

 Why advocate? My mom's family has history of Alzheimer's. My mom had it, my aunt had it, my uncle had it, my grandma and grandma's brothers and sisters had it.  What is the chance of me getting it? I'd say 50% chance. Should I wait for me to be afflicted by it before I take action? Absolutely not! 

I want the scientists of today to find a cure. They may not find a cure in my lifetime, but I want them to find a cure before any of my kids and grandkids have it. I am doing a lot of research myself.

I am hoping for the best and preparing for the worst. I do not want to be a burden to my family if ever I get afflicted by it.

You don't have a history of Alzheimer's in your family ... why should you care? Because no one is immune to it. I have met people who didn't have any family background and out of the blue ... they got it! And even if you don't get it, at one point on your life,  you will be touched by it - friends people you love may get it.

Alzheimer's is not just a disease of the old.  People in their 30's, 40's and 50's get afflicted by it in what we call "Early Onset Alzhiemer's Disease, EOAD for short".

Why Lilikoi?  Why Purple?

Because it's all about PASSION.  Lilikoi symbolizes passion and purple symbolizes courage.

My name is Liza and the color of my lemonade is purple. How about you? Had life given you a lemon? What color is your lemonade?

Harvard students pair up with Alzheimer's patients

The Harvard Alzheimer’s Buddies Program pairs up a Harvard student with an Alzheimer’s patient in a care-giving facility. The experience allows both the patient and student to build a relationship  with one another. It is a valuable program, and one that the founder Ryan Christ says hopefully will extend to other colleges soon.

Learn more by watching the video.

Read more at http://blog.thealzheimerssite.com/harvard-program-pairs-student-and-patient/#Fk5eOROqwgA4K3xG.99

Understanding the Stigma of Alzheimer’s

Alzheimer’s Patients Talk about Their Stigmatization You may experience stigma when you tell others that you have Alzheimer’s disease or if they find out. It’s important that you have open and honest conversations with people and educate them a bit about Alzheimer’s. Let others know what specifically you have noticed you have issues doing or remembering. If they try to go around your back for information, communicate that you’d still like for people to come to you and that there are various methods that you’re using to cope. As Alzheimer’s progresses, it may be harder to cope with the memory loss and cognitive impairment, but you need to remind others that you’re having regular consultations with the doctor and the condition is being monitored. Stress that you can still do many things and that you’d like to keep staying active and involved. Source: New Life Outlook

Seven Stages of Alzheimer's

Alzheimer's symptoms vary. The stages below provide a general idea of how abilities change during the course of the disease.

Stage 1: No impairment
Stage 2: Very mild decline
Stage 3: Mild decline
Stage 4: Moderate decline
Stage 5: Moderately severe decline
Stage 6: Severe decline
Stage 7: Very severe decline

Go to: http://www.alz.org/alzheimers_disease_stages_of_alzheimers.asp for full explanation

Update. Found a link to an even more detailed explanation: Click the title below:

CLINICAL STAGES OF ALZHEIMER'S

Abandonment

Abandonment. It's a serious issue for us. Every one of us with dementia has experienced it. Most often it's friends; sometimes it's family. It usually happens shortly after divulging my "horrible secret": I have Alzheimer's disease. People are uncomfortable and don't know how to deal with us. They are afraid to hurt or insult us, so they take the easy way out; they disappear from our lives. Although intellectually we know that the problem lies with them and not us, it still hurts. It effects us and impacts the quality of our lives. It's why so many of us work hard to advocate for us.

But every once in a while there appears a friendship as beautiful as this Naples Pier sunset we enjoyed while Taylor was visiting for the holidays. Last night Tiffany and I had a wonderful dinner with Shelley and Tom. Three hours went by in the blink of an eye! They ignore the disease and treat me as they would anyone else. When I screw up, we all laugh it off. Life is simply too damn short to fret the small things. We've only been friends for about six months, but one can easily tell that this is the kind of friendship that lasts.

So be thankful for those who stick with you through good and bad times, and...Stay tuned!

Written by David Kramer. Originally posted at Living Well With Alzheimer's Facebook Page

I Have Dementia - The Toll Is Huge!

The toll is huge!

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?

Written by David Kramer. Originally posted at Living Well With Alzheimer's Facebook Page

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In a New Approach to Fighting Disease, Helpful Genetic Mutations Are Sought

Original article on: NYTimes.Com

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.”

A version of this article appears in print on December 29, 2014, on page A1 of the New York edition with the headline: 
New Research Looks for Cures in Mutations. Order Reprints|  Today's Paper|Subscribe

Still Alice - Video Clips

Movie Trailer What it feels like

Getting Disability Benefits for Early-Onset Alzheimer's Disease

Social Security has specific criteria for when Alzheimer's qualifies for disability, but an early-onset diagnosis gets fast-tracked.

by Beth Laurence, J.D.

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.

A Marriage To Remember - A True Promise of "In Sickness and In Health..."