Tuesday, September 29, 2015

33 Things People Affected by Alzheimer’s Wish Others Understood

Every 67 seconds, someone in the U.S. develops Alzheimer’s disease, according to the Alzheimer’s Association. It is now the sixth leading cause of death in the country. Because the condition is so prevalent, we figured it’s time to clear up some of the misunderstandings surrounding it. The Mighty teamed up with Hilarity for Charity, a part of the Alzheimer’s Association, to ask our readers affected by Alzheimer’s disease, what they wish the world could understand about it.
This is what they had to say:
1. “It’s not a part of getting older. There’s a misconception that as you get older you become forgetful and Alzheimer’s is just a continuation of aging, but it’s not. It’s a terrible disease, not a part of aging. It’s not something that’s inevitable or just happens. It’s something we’re trying to fight to bring awareness to because with funding and research there can be hope.” — Stephanie Vasquez
2. “Be patient with those who suffer. Repeating and forgetting require compassionate responses, not exasperated ones. The disease might hide the person underneath, but there’s still a person in there who needs your love and attention.” — Jamie Calandriello

3. “I wish people understood how scary it must be for the person going through it.” — Tbird O’Leary
4. “The disease is still progressing… even though helpful medication exists, there’s still no cure, and we have to keep fighting to find one.” — Sally Noelle

5. “Just because he looks fine at this moment doesn’t mean it will be the same in five minutes, tonight or tomorrow.” — Nikki Dodson
6. “[People with Alzheimer's] can’t change the way it makes them act anymore than a cancer patient can keep the cancer cells from spreading.” — Brandyn Shoemaker

7. “I wish the world knew how heartbreaking it is to stand beside the woman who was the first one to ever call you by your name and realize she doesn’t know who you are. I wish they knew the joy it brings when she suddenly looks up at you after you’ve sat there for hours massaging her hands with lotion and says, ‘I love you, kid.’ It’s extremely hard to mourn the loss of my lifetime companion, my mother, while she’s still alive.” — Nancy Elizabeth Faram

8. “Rational thinking is gradually lost with Alzheimer’s, so don’t try to reason with someone with this disorder. Instead, distract them in as gentle a manner as possible. If they get angry or defensive, listen until they’ve said what they need to say. And remember, each time you interrupt or argue, you increase the duration of the conversation without resolving the issue.” — Rex Bierley
9. “It’s not simply forgetting things and people. It’s delusions, hallucinations, anger, poor judgment and personality altering. These things can come and go and the person suffering and their loved ones are on a continual and unknown roller coaster.” — Kimberly Crawford Bowman
10. “They’re not doing this on purpose.” — Denise Christy Reich

11. “The reality of this disease is that there’s no remission, there’s no stopping it, there’s no slowing it down, there’s no cure and there are no survivors.” — Suzanne Tackett

12. “One moment there’s clarity, and they look at you lovingly and say your name. A second later, they look at you frightened or confused because you look familiar or they don’t know you at all.” — Samwise Gamegee Works
13. “Even though behaviors have changed — the person you remember is still in there.” — Roxzan Sukola
14. “It’s an epidemic.” — ljsharp

15. “It’s not just memory loss. It robs the person of who they are and the ability to do the most basic tasks.” — Janice La Bella
16. “Losing some memories doesn’t make the still present ones any less important and meaningful.” — Molly Halla
17. “I wish people wouldn’t ask how my mom is doing or if she’ll get better. I wish people understood that Alzheimer’s is currently a terminal disease and that caregivers have to watch their loved ones waste away in front of their eyes. It’s often a painful thing to discuss [because] every time they ask, the person is worse than before.” — Michelle Raza
18. “[It's] devastating when a person who helped raise you completely forgets who you are.” — Odalys De Leon
19. “The caregiver, much like with any disability, carries a huge load. They need our support and love.” — Walking With Drake
20. “It’s not your fault.” — Rain Mom

21. “It’s the worst. People can’t handle it so they stay away. It’s isolating and lonely.” — Lisa Begley
22. “Although your loved one may not remember you or might do things that frustrate you, this is the time when he or she needs you the most. Your loved one needs you to care, to advocate, to be patient, to love and to be vigilant. Don’t turn your back on them.” — Angie Nunez Merryman
23. “I wish doctors would realize that the person with Alzheimer’s has thoughts and feelings about their care. Look the patient in the eye instead of talking to a family member and asking them questions as if the person who has Alzheimer’s isn’t there.” — Cynthia Adams McGrath
24. “You can’t explain what it’s like to mourn someone who’s still alive unless you’ve experienced it firsthand. It truly is the long goodbye.” — Jessica Seay-Soto
25. “[It's] important to remember those who are suffering from Alzheimer’s as they were before the disease and to keep that person in mind when learning to cope with the disease.” — alib13
26. “The person who has Alzheimer’s knows that pieces of the puzzle are missing, and they are terrified.” — sheilamcphierasak
27. “To lose a loved one is always sad, but losing a loved one bit by bit is so sad. It’s horrible to watch someone you love struggling to find words and trying to remember things they realize they should know. You feel so helpless seeing someone looking lost, and you try to take away that fear.” — Jeanette Maxwell

28. “I wish people understood the unique experience of grief and loss that comes with Alzheimer’s. My dad was 64 when he was diagnosed, and we’ve been living the loss of him for four years now, even though he is still in our presence. I can still hold my dad’s hand, but I miss him every day.” — Anna Copley
29. “Alzheimer’s patients are people, not patients. They are husbands, wives, brothers, sisters, bosses, employees, sons and daughters, all of whom were robbed of time and the ability to continue to chase their dreams and live their lives freely.” – nicoleadeline
30. “Referencing ‘The Notebook’ doesn’t mean anything to me. [My mother] not recognizing me is the least of my worries because she no longer knows how to swallow.” — fancyy77
31. “It can happen to anyone, young and old… my dad was 49 when diagnosed.” — karli_anne1012
32. “I wish other people would understand that the person affected by Alzheimer’s is not a child or a toddler, as I have heard people casually say to me. Yes, they have childlike qualities, but people have to understand this individual is still an adult, and you can’t treat them as you would a kid. My mom can notice when she’s not getting the respect she deserve.” — a11ofthelights1832
33. “They may not be able remember who we are, but they feel us just the same.” — Amanda Dillon

Tuesday, September 15, 2015

For Alzheimer's patients, resveratrol brings new hope

By Carina Storrs, special to CNN
(CNN)Over the years, resveratrol, an antioxidant found in grapes, chocolate and red wine, has been touted as a possible antidote to Alzheimer's disease, cancer, diabetes and many other conditions. Now, the first study in people with Alzheimer's suggests that the compound, when taken in concentrated doses, may actually have benefit in slowing progression of this disease.
Researchers at 21 medical centers across the United States looked at the safety and effectiveness of taking high doses of resveratrol in an experimental pill -- equal to the amount found in 1,000 bottles of red wine -- in people with mild to moderate Alzheimer's.
The researchers looked at several biomarkers of Alzheimer's, and found that people who took up to four pills a day for a year had higher levels of amyloid-beta proteins in their spinal fluid than those who took a placebo (control) pill.
Although accumulation of amyloid-beta in the brain is a hallmark of Alzheimer's disease, patients actually have lower levels of this protein outside of the brain. The study finding suggests that resveratrol could help change the balance from amyloid-beta buildup in the brain to circulating protein in the body.
Even if concentrated forms of resveratrol pills like the kind used in this study were available, it's too soon to recommend going out and getting some just yet.
"The study is encouraging enough that we should certainly go ahead and do a [larger] clinical trial because we showed that it is safe and does have significant effects on Alzheimer's biomarkers," said Dr. R. Scott Turner, professor of neurology at Georgetown University Medical Center and lead investigator of the study, which was published on Friday in the journal Neurology.
    The main goal of the current study, which included 119 patients, was to find out whether high doses of resveratrol could be safe. The only small concern they found was that patients taking resveratrol lost about two pounds during the one-year study, and weight loss is already a problem with Alzheimer's, Turner said. In comparison, the control group gained about 1 pound.

    Much more research is needed

    The study was not big enough to answer some important questions, such as whether patients taking resveratrol actually had lower levels of amyloid-beta plaques in their brain, and most importantly, whether they experienced less decline in their mental faculties.
    A large, phase 3 clinical trial getting at these issues could start in as soon as a year, Turner said. (The current study was a phase 2 trial, typically meant to evaluate safety and get an early look at efficacy of a new drug.)
    Even for the relatively small number of participants in the study, the researchers did see indication that resveratrol could improve cognition. Patients in this group had slight improvements in their ability to carry out daily tasks, such as remembering to brush their teeth. And anecdotally, patients who took resveratrol told the researchers that they felt like they were maintaining their mental ability. (Neither the participants nor the researchers knew who was taking resveratrol and who was taking placebo.)
    "To really get a better feel of how effective this could be you really need to do larger studies for longer periods of time (such as several years)," said James A. Hendrix, director of global science initiatives at the Alzheimer's Association, a research and advocacy organization. "Other potential therapies we've had had some early exciting results and then they didn't pan out in later trials," he added.
    If resveratrol does pan out in further research, it may add to the medications that are currently available, such as Aricept and Exelon, which slow, but do not halt, progression of the disease, Hendrix said.
    Ultimately, it will probably be a combination of several drugs, as well as diet, exercise and social and mental stimulation that help stave off the rapid mental decline that is often associated with Alzheimer's, he added.

    Antioxidant may be most effective in combination

    This is one of the first studies to look not only at these biomarkers, but also the metabolites of resveratrol in spinal fluid, to show that resveratrol is probably getting into the brain, said Dr. Giulio M. Pasinetti, who is the Saunders Family Chair and professor in neurology at the Icahn School of Medicine at Mount Sinai. However, he added that changes in biomarkers may not necessarily lead to mental and behavioral improvements, which larger studies will address.
    In addition, resveratrol on its own might not end up working as well as a combination of resveratrol and other polyphenol compounds found in red wine, grape juice and grape seed extract, which could help people at risk of Alzheimer's and those who already have mild symptoms, Pasinetti said.
    The current study used high doses of resveratrol to increase the chances that enough of the compound got into the brain to have an effect. But for now, the best way to get resveratrol is probably through diet. One glass of red wine a day could help those with mild Alzheimer's, "but no more than that," Turner said.
    There is probably little benefit in taking currently available resveratrol supplements, even if they claim to contain levels similar to the ones used in this study. "The things that are on the market are not regulated, and you don't know how much is in them," Turner said. "There could be 500 milligrams, which is what they advertise [researchers gave participants in the study four 500 milligram pills a day] or there could be zero," he said.
    Previous research has suggested that people who consume diets rich in resveratrol do not have lower rates of cancer, heart disease and other conditions.

    Monday, August 10, 2015

    Nevada Advocacy Retreat!

    Yes, That is me in the photo! Doing my part. Want to join me? 

    #beverlyjean #remembermyphoto #bmwphotography #endalz #purpledignity #wipeoutalz

    The Nevada Advocacy Retreat is coming up in September.   I am excited to be at this event this year. 

    The featured guest this year included: John Funderburk, Director of Advocacy of the Alzheimer's Association in Washington D.C. & Ruth Gay, Director of Advocacy for the Alzheimer's Association California and Northern Nevada.

    Why is this important? Nevada is leading the the numbers in Alzheimer's patients and the numbers are scary of what is coming if we are unable to find a cure.

    Why is this important to me? My grief for my grandma Bev is being healed a little bit each time by doing what I can in my community, along with trying to provide images on a global level with the several different Alzheimer's initiatives I am working on.

    Why is this important to my blog? Simply put if any of my Reno, Nevada followers would care to join me, I would love to share the day with each of you.

    My personal story, my personal trials, my personal heart break are similar to those dealing with the disease, or living with the disease;  however I share a dynamic that is not imaginable or talked about in general. Judge ordered emergency full guardianship & conservator-ship for my Grandma, two years before she died was a fight I won to keep her safe and protected as she progressed in her 8th year of the disease. 

    Wednesday, July 29, 2015

    The coming Alzheimer’s crisis in America

    Washington Post
    Current quibbling over what Jeb Bush meant when he said it’s time to phase out and replace Medicare — as opposed to “attacking the seniors,” as one woman at a recent event bellowed out — will soon seem quaint against the realities of our future.
    Never mind projections that the program will be able to finance only 86 percent of its obligations by 2030. Or that by 2050, the number declines to 80 percent, according to a recently released Social Security and Medicare Boards of Trustees report.
    These are relatively comforting numbers compared with new projections from the Alzheimer’s Association. By 2050, the group says, 13.8 million Americans may have Alzheimer’s disease, at a cost of $1.1 trillion per year, mostly to Medicare and Medicaid.
    Today, by comparison, 5.3 million have the disease.
    “Basically, it will bankrupt Medicare,” said Robert Egge, the Alzheimer’s Association’s chief public policy officer. I met with Egge and chief science officer Maria Carrillo during the association’s recent international conference in Washington.
    The 2015 cost of care for Alzheimer’s and all other dementias is estimated at $226 billion, with 68 percent being paid by Medicare and Medicaid, Egge said.
    This total includes only direct costs for the care of Alzheimer’s sufferers — there currently is no treatment — and doesn’t take into consideration unpaid care by families. Within the next 10 years, 19 states will see at least a 40 percent increase in the number of people affected.
    Lest you feel overwhelmed by numbers — and demoralized by the reduction of human suffering to numerical values — suffice it to say that we are in a state of emergency. Yet, even with this obvious urgency, relatively few resources have been dedicated to research for prevention and treatment compared with other chronic diseases. This, despite the fact that Alzheimer’s is the sixth leading cause of death in the United States, according to the Centers for Disease Control and Prevention.
    Current federal research funding is less than $600 million annually, while top scientists say they’ll need $2 billion a year to meet the association’s 2025 goal of prevention and effective treatment. There’s cause for some hope. Last month, bipartisan House and Senate subcommittees approved increasing funding to the National Institutes of Health for Alzheimer’s research by 50 percent and 60 percent, respectively.
    If this funding becomes law — and the association’s goals are met — costs could be reduced by $220 billion over the first five years and $367 billion in 2050 alone, according to an association report. Sixty percent of those savings would accrue to Medicare and Medicaid.
    Among other scientific developments reported this week, researchers have isolated a “common ancestor” among all forms of dementia, including Alzheimer’s, Parkinson’s and Lewy body.
    “All are caused by misfolding proteins,” Carrillo explained to me. Two different “misfolded” proteins — amyloid beta and tau — are toxic to brain cells.
    I am sad to report these proteins cannot be corrected with daily doses of a sturdy zinfandel. There is, however, a new drug that delivers a molecule scientists have created to “chaperone” these proteins so that they fold correctly.
    Carrillo doesn’t want to overstate the value of this one-target-one-molecule approach, though it is promising. She suggests that eventually we’ll treat Alzheimer’s with a “cocktail” that will be created based on an individual’s genetic makeup and other factors.
    Other hope-inspiring developments include six diagnostic tools that, in combination, can be useful in predicting Alzheimer’s. They include memory and thinking tests, as well as MRI scans that can measure the thickness of the brain’s right entorhinal cortex and the volume of the hippocampus, both of which are important to memory.
    It is reassuring that both policymakers and scientists are committed to tackling these diseases. But women especially should be interested in the progress of dementia research. For reasons unknown, women suffer Alzheimer’s at a higher rate — two-thirds of today’s sufferers are women. And women’s function declines twice as fast as men’s. This fall, the association will issue an international call for research on why this is so.
    In the meantime, Congress should waste no time in correcting the travesty of too-little funding for a devastating disease that demands our urgent attention. Otherwise, what to do about Medicare will be rendered irrelevant.

    Tuesday, July 21, 2015

    With millions more expected to develop Alzheimer's, more research funding demanded

    I am happy to read more articles that are coming out to share the news of Alzheimer's and its epidemic victims. The key right now is raising more money in hopes of finding a cure and also keeping the exposure along with the momentum going so that individuals understand the cost and this diseases that has zero survivors

    Writer for the Los Angeles Times
    By: Melissa Healy

    Over the next 35 years, about 28 million baby boomers will likely develop Alzheimer's disease, and the annual bill for their care will balloon from $11.9 billion in 2020 to more than $328 billion in 2040, says an analysis released Monday.
    Barring the discovery of treatment that could delay or prevent the onset of Alzheimer's disease, the cost of caring for baby boomers with the disorder by 2040 will eat up a quarter of the nation's total Medicare spending, researchers have estimated.
    That figure greatly underestimates the true cost of caring for those with Alzheimer's since it does not include out-of-pocket expenses, home care and long-term care insurance payouts, said Maria C. Carillo, chief science officer of the Alzheimer's Assn.
    The new projections were presented in Washington, D.C., on Monday at the 2015 Alzheimer's Assn. International Conference. The estimates come from an Alzheimer's Assn. model of the disease's incidence, prevalence and cost of care.
    The estimates were used Monday to sound a clarion call for more research funding aimed at finding ways to prevent, delay and treat the disease that progressively robs patients of their memory and their ability to function.
    Despite high stakes, candidate-medications on which patients and scientists alike have pinned their hopes have proved ineffective at disrupting or reversing the disease process. Those include wide-ranging efforts to develop drugs that reduce the accumulation amyloid plaques in the brain -- a hallmark of Alzheimer's disease. Researchers in Washington this week are to hear the results of new trials of genetically-engineered therapies that take that approach. But they also will learn whether experimental drugs representing two new approaches to treatment have proved promising in clinical trials.
    The escalation of the disease comes as baby boomers -- a generation of 76.4 million Americans born between 1946 and 1964 -- turn 65 at a rate of roughly 10,000 a day.
    "The risk of Alzheimer's increases with age, and as baby boomers get older, the number of people developing the disease will rise to levels far beyond anything we've ever seen before," said Keith Fargo, the Alzheimer's Assn.'s director of scientific programs and outreach.
    Next year, the oldest baby boomers will begin turning 70 -- an age at which new diagnoses of Alzheimer's jump from less than 1% (among those 65 to 69) to 2.5% (among those 70 to 74). By the year 2050, just over half of baby boomers will be 85 or older, and many with Alzheimer's will have progressed to the disease's most debilitating stages. The cost of care will rise accordingly, the new estimates predict.
    Fargo lauded the work of researchers and scientists exploring several promising new approaches to thwarting Alzheimer's. But "Alzheimer's is extremely underfunded compared to the magnitude of the problem," he warned in a speech delivered to researchers and clinicians gathered in the nation's capital.
    "If we're going to change the current trajectory of the disease, we need consistent and meaningful investments in research from the federal government to ensure a more robust pipeline," Fargo said. Treatments that have driven down rates of heart disease, cancer and HIV/AIDS infection have benefited from the steady commitment of federal funds, Fargo said.
    "Now is the time to do the same for Alzheimer's disease," he added.
    The National Institutes of Health are expected to spend $586 million in this fiscal year on Alzheimer's research, and the Obama administration has proposed a $638-million budget for fiscal year 2016. But the planned upward trajectory of spending on Alzheimer's must still make its way through Congress.
    The escalating impact of this dementia could be blunted even by therapies that merely delay the onset of Alzheimer's. An Alzheimer's Assn. report released earlier this year estimated that if some therapy were able to delay the average onset of Alzheimer's by five years, the number of people who have the disease in 2050 could drop from 13.5 million to 7.8 million.
    The resulting savings could amount to $220 billion over the first five years that such a therapy were in wide use.

    Monday, July 20, 2015

    New saliva test may catch Alzheimer's disease early

    By Liza Lucas, Special to CNN

    (CNN) A test detecting Alzheimer's disease early may become easily available thanks to one plentiful bodily substance: saliva, a recently released study shows.
    The saliva test was presented at the 2015 Alzheimer's Association International Conference in Washington this week. Though research is still in its infancy, the saliva test represents the exciting future of diagnostic tools in development for the detection of the neurodegenerative disease.
    While doctors are currently able to see the difference between a healthy brain and one affected by Alzheimer's, the study emphasizes the importance of detecting Alzheimer's-like changes early.
    "As the field has continued to mature over the last decade or so, we now have research and evidence that suggests that the underlying biology of Alzheimer's disease is changing a decade or more before someone experiences the memory or function changes associated with Alzheimer's," said Heather Snyder, director of medical and scientific operations at the Alzheimer's Association.
    This test examines saliva samples and looks at changes in saliva as the potential way to detect changes in Alzheimer's, Snyder said.
    Researchers from the University of Alberta in Canada analyzed saliva samples of fewer than 100 people, divided into three groups based on cognitive ability: 35 with normal aging cognition, 25 with mild cognitive impairment and 22 with Alzheimer's disease.
      Using protein analysis technology, researchers examined the saliva of each individual, analyzing nearly 6,000 metabolites, which are small molecules that are byproducts of chemical reactions in the brain.
      The team then discovered specific biomarkers (or patterns of metabolites) in the groups with known Alzheimer's or mild cognitive impairment, in comparison with the natural aging group, and tested the biomarkers as predictors of cognitive performance.
      The study was validated through the analysis of a new and independent sample of 27 participants.
      "Salivary metabolomics analyses will advance the cause of early detection of Alzheimer's disease ... and promote our understanding of the mechanisms from normal aging to Alzheimer's," said Shraddha Sapkota, a neuroscience graduate student at the University of Alberta in Canada who presented the study.
      The saliva test is a minimally invasive, as well as cost-effective, way to screen patients early. It allows doctors to identify who is potentially at risk as well as help establish who should be treated and when.
      "Saliva is very easy to collect and transport, which will enhance participation in remote centers and diverse populations," Sapkota said.
      The study was presented at the conference but has not been published or peer-reviewed, which is the gold standard of scientific research. As a result, experts emphasize more research is needed before the saliva test can be used as a detection tool.
      "It is extremely preliminary," said Dr. Dean Sherzai, director of the Alzheimer's Disease Prevention Program at Cedars-Sinai. The samples are so small, the abnormalities could have been incidental, he said.
      "In science, the key is replication," Sherzai added. "[The study] has to be replicated, and it has to be replicated in a larger population."
      While there's no test that conclusively determines whether someone will get Alzheimer's, the saliva test once validated would be a good screening tool, indicating a patient's need for further, more invasive testing. It's especially exciting for Sherzai since it could be used in clinic, or even community, settings.
      "This is important because the earlier you detect this disease," said Sherzai, "the more we can have an effect on the outcome."
      The progressive brain disorder is the sixth leading cause of death in America and affects nearly 5 million Americans. That number is expected to triple by 2050.
      "We have a pressing need to be able to identify people at risk for Alzheimer's disease," said Dr. Richard Isaacson, director of the Alzheimer's Prevention Clinic at New York-Presbyterian/Weill Cornell Medical Center in New York.
      "What we're realizing is that if we can find a drug or some sort of intervention that can slow down or reverse the disease, we'll need to use that drug as early as possible," Isaacson said. "When someone starts having symptoms of memory loss, mild cognitive impairment or dementia due to Alzheimer's, it's so much more difficult to treat."
      Alzheimer's risk reduction and prevention is the new frontier in the disease, according to Isaacson. So the only way to put a dent in the disease is to find some sort of biomarker decades before symptoms start.
      A clinical trial has not been set, but a larger sample study is in the works, according to Sapkota. "We are still at the beginning stages and much work is needed before we can include tests of saliva for the general population," she added.
      Experts say they will be looking for such an easy-to-use, affordable option like the saliva test for the day when that magic pill or drug treatment becomes available.
      "When that blockbuster drug comes," said Isaacson. "A test like this is what we're all looking for."

      Wednesday, July 15, 2015

      2015 San Francisco Chinese Alzheimer's Forum

      Date: Sunday, July 19, 2015
      Time: 1:30 - 4:30 pm
      星期日 1:30 - 4:30 pm  
      The San Francisco Public Library - Koret Auditorium
      100 Larkin Street (at Grove)
      San Francisco, CA  94102  
      A English/ Cantonese Bilingual Health Seminar on Alzheimer's Disease and related dementia, Diagnosis and Care