Friday, May 20, 2016

Beastie Boys founding member dies from Dementia

Beastie Boys founding member John Berry dies at 52
John Berry, the founding member of the Beastie Boys and the person who came up with the groundbreaking hip hop group's name, has died. He was 52.
Berry died Thursday morning at a hospice in Danvers, Massachusetts.
He suffered from frontotemporal dementia and his health had been failing for several years, his father, John Berry III, said.
Frontotemporal dementia shrinks brain tissues and leads to changes in personality and behavior, and difficulties with language.
"It's nice to see the outpouring of love and support for our son," Berry III said, after his son's death. "He was a tremendous son, a tremendous musician, and quite a wonderful artist."
The Beastie Boys, who blended punk and rap, burst on the music scene in 1986 with the album "Licensed to Ill," which included hits such as "(You Gotta) Fight for the Right (to Party"), an anthem to teen angst; "Brass Monkey" and "No Sleep Till Brooklyn."
Their success in hip-hop was notable at a time when the music form was dominated by African-American performers.
"The group's music crossed genres and color lines, and helped bring rap to a wider audience," said Neil Portnow, president of the Recording Academy.
But Berry had departed long before then.
He played on the band's first EP, "Polly Wog Stew," but left the group shortly afterward.
The band thanked Berry, calling him a formative member, when they were inducted into the Rock and Roll Hall of Fame in 2012

Tuesday, May 10, 2016

A Poem for Her

Titled: Her
By: Brooke M. Westlake-Kelley

Her eyes were once blue like the ocean.
Her eyes now were gray and dark.
Her smile was once big and bright.
Her smile now was a straight line.
Her laugh was once full of life.
Her laugh now did not exist.
Her hair was once bright blonde with big curls.
Her hair now  was silver and frail.
Her hands were once strong. They planted flowers, played the piano, and sewed quilts.
Her hands now were weak and could not hold a drink.
Her body was once strong. It skied many miles in the winter and hiked many miles in the summer.
Her body now was slow and tired.
Her mind was once sharp. It could think on its toes. It could answer sentences and remember the daily schedule.
Her mind now was gone. It had disappeared over the years. It could not form a sentence and it could barely say a word.
Her soul was once full of life.
Her soul now is resting peacefully in heaven.

Dedicated to all of those who have lost a loved one from Alzheimer’s.
Beverly Jean Charles 1929-2012

Wednesday, May 4, 2016

This video game could help doctors diagnose dementia

By Meera Senthilingam, for CNN
Vital Signs is a monthly program bringing viewers health stories from around the world.
(CNN)Have you ever wanted to take to the seas on a global adventure? A new game available on smartphones worldwide from today does just that -- and could help dementia patients in the process.
The game, called Sea Hero Quest, asks players to set sail in search of precious artifacts -- in the form of memories -- which can be collected at different locations around the world.
    As you progress through the game, scientists can use the data you generate to gain insight into your spatial navigation abilities -- one of the first skills lost at the onset of dementia.
    The aim is to get hundreds of thousands of people playing from around the world, to identify what the normal range of navigation skills are among people in general.
    Once that is established, neuroscientists could then identify further guidelines to spot dementia early.

    How big a problem is dementia?

    Despite being potentially preventable in one-third of cases, it's estimated that someone develops dementia globally every three seconds. In 2015, more than 46 million people were living with dementia worldwide, according to the World Alzheimer Report 2015.
    The condition is a collection of symptoms, such as memory loss, difficulties in thinking or problem-solving, and reduced ability to navigate, and is caused by diseases including Alzheimer's and Parkinson's.
    "Dementia is increasingly becoming one of the greatest medical challenges we face globally," says Hilary Evans, Chief Executive of Alzheimer's Research UK.
    "It is a disease you can's not an inevitable part of ageing."
    Despite the high numbers affected, an accurate test for the condition remains unavailable. But this could be about to change -- depending on the popularity of Sea Hero Quest.
    "[The game] can tell us: 'How do people get lost?' says Hugo Spiers, a neuroscientist atUniversity College London (UCL), who is leading the research stemming from the game's data.
    "Fundamentally people with dementia -- Alzheimer's dementia -- struggle to navigate and on a scientific level we don't know enough of how people navigate to help really pin down what's going wrong," he said.

    The need for global data

    The team want at least 100,000 people to play the game by the end of 2016 to provide the ideal range of data needed to provide this missing information. Data will be anonymous and only available to researchers at UCL.
    "Step one is establishing this live database of how do people navigate...that gives us the tool to develop that diagnostic," said Spiers.
    The team imagine a future scenario in which people suffering from dementia can be identified early -- by playing the game -- and trialed on relevant drugs to stop the disease taking full hold of their mind.
    "You could give them [the game] and monitor if the drug is effective in a really powerful way," added Spiers.

    Next step: Brain imaging

    In the next stages of the project, Spiers would like to have volunteers play the game while having their brain scanned in order to see which parts of are active, and link this to patterns seen in the population worldwide.
    "I hope to collect neuroimaging data from people playing this game to really understand how the circuits are activated as people play the game," says Spiers.
    This is not the first use of mobile games to crowdsource data for scientists. Cancer Research UK have launched five games to date, including Play to Cure: Genes in Space in 2014, which obtained data as people traveled through space and helped identify codes and patterns along their way -- unwittingly.
    This time, as players travel the seas instead of space, their navigation choices and strategies will be the data of use as they're set new and changing challenges to test their true abilities.
    Sea hero quest, available on iOS and Android from May 4, was created in a collaboration between Deutsche Telecom, Alzheimer's Research UK, Scientists from University College London and the University of East Anglia and game designers Glitchers.

    Thursday, April 28, 2016

    Too Soon to Forget

    I met this awesome couple at Hilarity for Charity 2015
    By Rita Pyrillis for Work Force

    The first time Ken Dodson got lost, his wife Nikki chalked it up to stress. Ken Dodson, who was 28 at the time, was a supervisor at a Michigan steel company and often worked 12-hour days back in 2008, so getting a little turned around on his way home from the store didn’t seem like a big deal. But when it happened again on his way to pick up their daughter from school, Nikki Dodson’s gut told her that something was wrong — really wrong.
    At work, Ken Dodson noticed that he tired easily and kept forgetting safety protocols that he knew by rote.
    “I was having trouble doing things I did all the time,” Ken Dodson said in a recent Workforce interview, pausing a few beats after each carefully crafted sentence. “I usually never missed any time at work, but that last year, I didn’t have any energy. My mind raced to try to remember things, and it made everything worse.”
    Over the next two years, the Dodsons consulted doctors who said depression was likely the problem and prescribed antidepressants, but nothing changed. Nikki Dodson feared a brain tumor. It wasn’t until the Dodsons insisted on a brain scan that a diagnosis was confirmed. One week before his 30th birthday, Ken Dodson was diagnosed with early-onset Alzheimer’s disease.
    “I never in a million years thought Alzheimer’s, and I never thought that by the time I’m 40, I’ll be a widow with three kids at home,” Nikki said. (The average life expectancy for Alzheimer’s patients after diagnosis is eight to 10 years.) “People would say, ‘I hope you have money saved up,’ and I thought, ‘Are you kidding me? We were just starting our careers, we had just built a house, and we had just started our 401(k).’ ”
    Alzheimer’s disease is an irreversible, degenerative disorder that destroys memory and can also affect problem-solving, behavior and speech. While it’s typically considered to be a disease of old age, approximately 200,000 of the estimated 5.3 million Americans with Alzheimer’s have been diagnosed under age 65. And that workplace number is expected to grow as baby boomers age, posing a challenge to employers who risk losing talented employees unless they are willing to help caregivers and those diagnosed with the disease to stay on the job as long as possible.
    Early-onset Alzheimer’s, also known as younger-onset Alzheimer’s, can hit when someone is in their 30s or 40s, a time when families are least likely to have the financial and emotional resources to cope.
    For the Dodsons, now both 37, it meant losing their major source of income and their health insurance. Ken Dodson lost his job during a series of layoffs shortly after his diagnosis, and Nikki Dodson, a teacher, had to quit her job to become her husband’s full-time caregiver. Luckily for the Dodsons, individuals with early-onset Alzheimer’s are automatically eligible to receive expedited Social Security benefits, though the amount was a fraction of their dual income.
    “I know these are just material things, but we worked so hard to achieve them and now we have to work so hard just to make ends meet,” she said.
    Working and Caregiving
    Whether an employee has Alzheimer’s or is caring for someone with the disease, employers will feel the fallout, according to Dr. Lawrence Weinstein, chief medical officer at Humana Behavioral Health. 
    “Nearly 15 million people provide unpaid care to a person with Alzheimer’s or other dementias,” he said. “Many caregivers of people with Alzheimer’s reported making major changes to their work schedules because of caregiving responsibilities.” This includes going to work late or leaving early, taking a leave of absence, going from full time to part time or quitting, Weinstein said.
    Employers will also see higher disability costs if more workers in their 50s and early 60s suffer from cognitive impairment associated with dementia as well as lost productivity as employees struggle to manage their treatment, their finances and family demands, he said. 
    While Alzheimer’s at any age is devastating, for younger adults with families to support, it can be even more overwhelming, according to social worker Susan Frick, co-founder of Without Warning, a support group at Rush University Medical Center in Chicago for people with early-onset Alzheimer’s disease. Getting a diagnosis can be difficult because no one expects a person in their 30s or 40s to have Alzheimer’s.
     “It takes multiple doctors to see what’s going on,” she said. “Sometimes they’ll write it off as depression or, with women, as menopause. Sometimes it takes the caregiver a while, too. The person might seem more withdrawn or different, but that could be anything.”
    Frick said often the first people to notice a problem are co-workers, which makes awareness important for employers.
    “Often the workplace starts to notice the problem before the family does because it’s hard to hold it together at work,” Frick said. “Some people say they have to pull all-nighters to get the same level of work done. Anything new to the routine can become difficult. A lot of people say they try to keep it a secret but it becomes harder to do.”
    Carrie Richardson, 35, had no choice but to tell her employer that she has early-onset Alzheimer’s. In 2010, Richardson, a single mother of three living in Montgomery, Alabama, joined a federally funded study of a rare form of Alzheimer’s disease that is caused by a gene mutation. Richardson must take time off every few months to undergo rigorous cognitive testing; for a time, a nurse would show up at Richardson’s workplace to take her vitals and administer medication. Richardson, who teaches preschool, said her supervisors are supportive and give her the time off that she needs.
    While she shows no symptoms yet, Richardson, who still teaches preschool, is preparing for the inevitable. Her mother moved in with her in August to help take care of her children who are ages 15, 13 and 9, and she has insurance policies and a living will in place. She understands what lies ahead all too well. Her father, grandmother, three uncles and a cousin all died from early-onset Alzheimer’s. Richardson has two brothers — one tested positive for the genetic mutation, and the other did not.
    For now, Richardson watches for signs that the disease has progressed.
    “I’m busy with three kids so I think some of it is normal, but I don’t want to push it aside either,” she said. “I forget names of bands that I like. I forget small stuff. This morning I couldn’t find my keys, and I was asking all the kids where my keys are. I spent 30 minutes looking. I put cream in the pantry. And over the summer, we moved into a new house and one day I pulled into the driveway and my daughter said, ‘This is not our house.’ ”
    Richardson is lucky to have a supportive employer, but that’s not the case for many workers, according to Ruth Drew, director of family and information services for the Alzheimer’s Association in Chicago. Often employees who are struggling with job performance because of early-onset Alzheimer’s are afraid to ask for help or they are unaware that something is wrong, and colleagues are afraid to speak up, she said.
    “If they get fired before anyone figures out what’s going on, then they can’t take advantage of the benefits they qualify for,” she said. “I love it when the family gets a diagnosis early on because that gives them the most options to work with HR and take full advantage of the benefits available to them.”
    The association offers resources to employers to raise awareness of Alzheimer’s in the workplace to help human resources better understand the disease and develop support for employees who care for a loved one with Alzheimer’s.
    “About 15 million working Americans are caring for someone with dementia, and we don’t see it slowing down,” she said. “They may have kids in college or younger kids at home. They will be both caregivers and ones being cared for. We are seeing a tremendous impact on caregivers. Without a cure it’s really incumbent on all of us to have awareness of this disease and how it impacts caregivers.”
    But employers need to be cautious not to jump to conclusions and assume that signs of forgetfulness or cognitive lapses means someone has the disease, according to Peter Petesch, a shareholder with the law firm Littler Mendelson in Washington, D.C.
    “A lot of us should stick to our day jobs and manage performance, but when someone is aware that an employee has a diagnosis, there are certainly accommodations that can be made,” he said. “But it’s incumbent on the employee to come forward. Ask for an accommodation before it becomes a problem. The safest and most proactive approach an employer can take when an employee’s performance is deteriorating is to confront them with performance problems and determine if there is any way to get them back on track. It doesn’t involve diagnosing the employee, but it involves throwing it back to the employee to ask for accommodation.”
    While the Americans with Disabilities Act doesn’t issue a list of medical conditions that are covered, it has a general definition of disability that a person must meet to be covered. If an employee with dementia meets the criteria, they will be covered, Petesch said.
    “If the condition substantially limits life activity and impairs thinking, reasoning and a whole variety of cognitive activities,” he said, “then it almost always rises to the level of a disability under the ADA.”
    Petesch advises employers to consider accommodations like putting instructions in writing or working with the employee to set up deadline reminders on their online calendars. 
    What employers can’t afford to do is ignore the problem, Drew added.
    “The number of people impacted by Alzheimer’s is going to increase as the baby boomers age,” she said. “Any employer that does not look at the issue and is not aware that they have employees who are struggling to care for someone with Alzheimer’s is at risk for losing really talented staff. People are able to stay in the workforce longer when they have flexibility, and employers should help them find a way to do that.”
    Employee Benefits and Early-Onset Alzheimer’s
    Getting an Alzheimer’s diagnosis among those under age 65 can be difficult because the condition is relatively rare, affecting about 5 percent of Americans with the disease.
    But it’s important that employees seek a diagnosis as soon as possible to maximize the benefits available to them, said Ruth Drew, director of family and information services, at the Alzheimer’s Association in Chicago. The organization outlines the options available to those who have received a diagnosis.
    Private insurance
    • Disability insurance: Short term and long term.
    • Family and Medical Leave Act, or FMLA: Employees are allowed 12 weeks per year.
    • COBRA: Employees need to be aware that, to retain coverage past a certain point, they will need to provide the insurance company proof of disability to continue coverage until Medicare kicks in.
    Social Security Disability
    The U.S. Social Security Administration includes early-onset Alzheimer’s to the list of conditions under its Compassionate Allowance Initiative, expediting access to Social Security Disability Insurance and Supplemental Security Income eligibility. Social Security disability benefits will begin five months after an employee develops a disability. Payment should start during the sixth month of disability. Begin this application process when the employee goes on short-term disability and provide the written diagnosis to Social Security to aid in the approval process.
    Coverage will start approximately two years after the employee has been on disability.
    This program is available to employees when they start Medicare to bridge the gap in medical coverage. If the employee chooses one of the Medicare Advantage Plans, Medigap may not be available to work with their plan.
    Medicare Managed (Medicare Advantage Plans)
    Medicare has partnered with several insurance companies to provide Medicare coverage with the addition of prescription coverage.
    —Rita Pyrillis

    Thursday, April 21, 2016

    Why "Remember My Photo"?

    My blog "Remember My Photo" is dedicated to remembering the ones we have lost to Alzheimer's disease & Dementia along with informational content and new initiatives for volunteer work I am apart of to help raise awareness about this disease.
    This disease is now the most expensive in America! Over 5 million individuals in the US have Alzheimer's or some form of Dementia.

    This disease does not discriminate by color, religion, politics, sex or status.

    There is still no cure, and it is estimated right now there are 35.6 million people with this disease. That number was in 2010. It's heart breaking to watch, and I know all to well first hand about this awful disease because of my beloved grandma Bev. She lost her battle on February 24, 2012 while cradled in my arms like a baby.

    My Grandma Bev was diagnosed in 2000. At first the changes and forgetfulness were not that noticeable  She was still her fun loving self. Laughed at life in general. Didn't take to many things to seriously, loved to ski in the winter and hike in the summer. Maintained healthy lifestyle. Always got her hair colored because she didn't like having any grey hair. She was a independent, strong, fun loving woman whom had married three times, had one child and one grand child (me). She helped raise me. I spent all my summers with her.  She took me cloths shopping each school year. Taught me to say please and thank you. Told me how to introduce myself an shake a persons hand. She always wanted me to pick up her knack for skiing, but she knew deep down I was a pageant girl at heart. She loved to tell her friends about how hard "Brooke" worked with my jobs in the medical field as I worked my way through college.  Grandma would occasionally pay for my school books or send me some extra money for school. As I got older we saw each other at least twice a year when she traveled back and fourth to her Oregon home to her Arizona home.  We talked on the phone several times a week.

    As the years progressed so did her disease. It was very hard for me to see this strong loving woman go back into a child like state.  The fist time I saw her at the memory care facility, she would smile, I would cry. She didn't know my name some of the days.. She would have moments where she did "know me", but other times would sit and smile and me. My heart broke each time I had to say goodbye. I would watch her stair at me behind a locked door in the facility because that is where she had to be due to the progression of her disease.  She was in the lock down ward of the memory care facility.
    For Grandma Bev! Longest Day Ever, June 2014

    Friday, March 25, 2016

    Alzheimer's Forum, 2016 is Almost HERE!!!

      2016 Forum cropped.jpg
    Join the Pre-Forum Conference Call
    The 2016 Alzheimer’s Association Advocacy Forum is less than 2 weeks away!  Are you ready to join over 1,100 fellow advocates from around the country in Washington, DC and press Congress to make Alzheimer’s disease a national priority?
    To help get you prepared, we will host a nation-wide teleconference on Thursday, March 31st from 6:00 pm to 7:00pm (Eastern). This will be your opportunity to learn about the legislative priorities you’ll be talking about with your members of Congress and what to expect at the Advocacy Forum.

    We look forward to sharing this information and providing an opportunity for you to ask in-depth questions as you prepare for the Advocacy Forum. To participate in the call, dial (877) 713-9335. The Conference ID is 7783 5767. An operator will connect you to the call. We hope you can join us on March 31st and we look forward to seeing you in Washington, DC!

    Tuesday, March 1, 2016

    Alzheimer’s Risk: Do You Want to Know?

    By Reviewed by Arefa Cassoobhoy, MD, MPH 
    If a test could tell whether you’ll get Alzheimer's disease someday, would you want to know? And if so, what would you do with that knowledge?
    These questions are becoming more and more important as researchers close in on tools to predict your risk of Alzheimer’s disease decades before symptoms start to appear.
    “Primary care physicians, in the disease’s early stages, [eventually] could be able to say, ‘It looks like there’s a problem here’ through a blood test, a saliva test, or by looking at the retina,” says Dean Hartley, PhD, director of science initiatives for the Alzheimer’s Association. “But there’s no medical test now. It’s all in the research stage.”
    For now, only genetic tests are available to the general public. They can spot genes linked to a higher risk of Alzheimer’s, such as the ApoE4 gene. But genetic tests aren't conclusive. Not everyone whose test result says they have ApoE4 will get Alzheimer's, and many people who don’t have that gene will get the disease.
    And if you have the gene, there isn’t much you can do yet, aside from making lifestyle changes that may be preventive. “You can get the ApoE4 test at your doctor’s office, but I and many of my colleagues rarely offer it, because we don’t have any treatments to offer if we determine that patients are at higher risk,” says Alzheimer’s researcher Liana Apostolova, MD, a professor at the Indiana University School of Medicine.
    Also, knowing your risk could come with a price. Seven years ago, Jamie Tyrone learned unexpectedly that she had two copies of the ApoE4 gene.
    “I went into a deep, dark hole,” says Tyrone, 55, a former nurse who lives in San Diego. “This information was very anxiety-provoking, to the point that I was diagnosed withPTSD [post-traumatic stress disorder]. Knowing has done me harm.”

    Tyrone says Alzheimer’s was not on her radar when she was tested for a variety of genetic disorders as part of a research study. Being unprepared for the news, she says, made her anxiety worse.

    Eventually she learned to cope. She started to take better care of herself, exercising and improving her diet, meditating and doing brain-twisting puzzles purported to strengthen memory and focus. And she became involved with research into the disease. She founded B.A.B.E.S., Beating Alzheimer’s By Embracing Science, a non-profit that supports research into the disease and encourages people to get involved.
    Tyrone wants others to learn from her experience.
    “I’m choosing to heal by talking about it,” she says. “I don’t want people to go through what I went through.”

    New Ways to Detect Alzheimer’s Disease

    The biggest advance toward the early prediction of Alzheimer's, Hartley says, is using PET scans to show the buildup of beta amyloid plaques in the brain. The plaques are a risk factor for the disease, and in the past they could be seen only during an autopsy.
    “This is an opportunity to see into the live brain,” Hartley says.
    The FDA has approved PET amyloid imaging for use in some clinical trials and to help diagnose dementia patients, but not to predict the development of the disease -- at least not yet.
    “PET imaging with amyloid will be the first way of approaching prediction,” Apostolova says. MRI will also be useful, she says, as will PET imaging for tau proteins, another sign of disease.
    But, she continues, amyloid PET scans are expensive, not readily available, and they expose patients to radiation.
    “What if there’s another way to get at the answer of who’s at risk?” she asks.
    Research Apostolova led while at UCLA resulted in a simple blood test that picks up biomarkers -- or proteins in the blood -- linked to Alzheimer’s. Along with other tests, it one day may help predict the disease. She published her early findings in January in the journal Neurology.
    Researchers are studying several other new tests:
    • A saliva test that identifies biomarkers linked to Alzheimer’s disease.
    • A combination of cognitive tests, MRI scans, and analysis of proteins found in cerebrospinal fluid -- fluid in the brain and spinal cord that can predict mild cognitive impairment, or thinking problems, 5 years before symptoms become apparent.
    • Measurements of the protein neurogranin, a potential Alzheimer’s biomarker found in fluid in the brain and spinal cord.
    • Tests that uncover the deterioration of your sense of smell may indicate Alzheimer’s.
    • Eye exams that can measure beta amyloid buildup.
    All of these tests remain experimental, and their effectiveness remains to be seen.
    “Saliva tests, blood tests, and things like that are not ready for prime time,” Hartley says.

    Knowing Your Risk

    If you do learn your risk of Alzheimer’s -- through a genetic test or, eventually, through one of these still-experimental tests -- what can you do with that knowledge? And how would it affect you? After all, with no viable treatments available to slow, stop, or prevent the disease -- only drugs that may improve symptoms in some people for a short time -- there’s little doctors can offer you.
    “Some people would want to know so they can plan things out, such as long-term care insurance and end-of-life decisions, while others would not want to know,” says David Salmon, PhD, of the Shiley-Marcos Alzheimer’s Disease Research Center at the University of California, San Diego. “It’s a personal decision. It’s hard to say what the best advice would be.”
    Salmon’s research suggests that knowing you’re at risk can have bad consequences. You're more likely to rate your memory worse and do worse on a memory test than someone with the same risk who is unaware.
    “We don’t think it’s depression, but we didn’t measure anxiety and stress, so we don’t know if the disclosure increased anxiety and that it’s the anxiety that causes you to have memory problems,” Salmon says.
    But other research suggests that knowing your genetic risk does not up your chances of depression, anxiety, or distress. Jason Karlawish, MD, an Alzheimer’s expert and medical ethicist at the University of Pennsylvania, has studied middle-age adults with a family history of Alzheimer’s.
    If people get their mood and well-being assessed before they get tested, "they have minimal problems with mood and well-being after learning the results,” Karlawish says. “We don’t have data from persons who are older and plausibly closer in age of onset to AD.”
    Karlawish is involved in a study of an experimental Alzheimer’s drug known as solanezumab. The drug, made by Eli Lilly, targets amyloid plaques and may delay the onset of cognitive decline. It is now being tested on people who don’t have Alzheimer’s symptoms but whose PET scans have shown the presence of such plaques, a potential early warning sign of the disease.
    It’s among several meds that may prevent or slow Alzheimer’s from getting worse that are being studied in people long before they show symptoms.
    Karlawish’s previous research suggests that that knowledge may motivate people to change their lifestyles. That’s what Tyrone eventually began to do. She has improved her diet and her exercise habits, she’s at work on a book about her experiences, and she’s become involved in Alzheimer’s research, such as studies into new medication. That’s something she highly recommends -- as does Karlawish -- for people who know they’re at risk.
    “Yes, it’s partially selfish, because you’re getting something as well as giving something,” she says. “You’re at the forefront of cutting-edge research.”
    But if you don’t yet know? “I would ask them, why do you really want to know this information? And can you make changes without knowing that information?” Tyrone asks. “It may be anxiety provoking. Is it really healthy to know this information or is not healthy? What are you going to do with it?”