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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Round Up

Alzheimer’s Round Up – Nov 2018

12 Monday Nov 2018

Posted by Ann Napoletan in Advocacy and Awareness, Be Brain Powerful, Brain Health, Celebrities, Children and ALZ, Events, Face of Alzheimer's, Genetic Testing, Research, Round Up, Treatments and Therapies, USAgainstAlzheimer's

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alzheimers, alzheimers research, Be Brain Powerful, Brain Health, dementia, diagnosing alzheimers, kid caregivers, sandra day o'connor

Greetings, friends. It’s time for an Alzheimer’s Round Up. As always, thank you so much for reading. Stay tuned for some tips as you prepare for the upcoming Thanksgiving holiday.

Until then…

Be Brain Powerful

This past week, the Be Brain Powerful campaign launched in NYC. This WomenAgainstAlzheimer’s campaign aims to bring awareness to women’s brain health and “ignite a cultural transformation in the way we care for our brains.” We talk about taking care of our bodies, but why don’t we talk about taking care of our brains? Be Brain Powerful will be a formidable health and wellness initiative, and Marilyn’s Legacy is proud to be a partner in this movement! If you had to choose one word to explain what brain health means to you, what would it be? Mine would be, independence.

Alzheimer’s Talks – Nov 20

Coming up at 1pm ET on November 20, UsAgainstAlzheimer’s hosts AlzTalks: A Biomarker Test – Now and in the Future.  During the call, Scott Lewis, Director of Alzheimer’s Disease Diagnostic Pathway at Biogen, will discuss techniques used today to diagnose Alzheimer’s and what diagnosis might look like in the future. In addition, Melissa Bianchi, an expert in patient protections and partner at law firm, Hogan Lovells, will share thoughts on how families should prepare for receiving biomarker confirmation. The call is free, register by clicking here.

Keep Asking Questions

Retired Justice Sandra Day O’Connor, the first female ever named to the U.S. Supreme Court, recently disclosed she has been diagnosed with dementia, most likely Alzheimer’s disease. O’Connor retired from the Court in 2006 to care for her husband, John, who also had the disease. In his touching article for Psychology Today, Greg O’Brien shares the story of meeting Justice O’Connor in Arizona back in the 1970’s and the mentorship and friendship that ensued. Click here to read Greg’s article.

Exciting Research at West Virginia University

Judy Polak was diagnosed with Alzheimer’s in 2014 and is now the only person in the world to undergo a new procedure using ultrasound waves in an attempt to slow the disease. The key is temporarily opening the blood-brain barrier, allowing antibodies from the immune system to pass into the brain and break up the plaques. You can read more about the trial, overseen by Dr. Ali Rezai, Executive Chair of WVU’s Rockefeller Neuroscience Institute, by clicking here.

An 11-Year Old Making a Difference

Hailey Richman is a force to be reckoned with! Her grandmother was diagnosed with Alzheimer’s when Hailey was just four, and that experience sparked her passion for helping others. Noticing there wasn’t much support available for kids, she started Kid Caregivers, a website providing support and encouragement to children affected by the disease. To learn more about how Hailey is using puzzles to help thousands who are living with Alzheimer’s, click here.

 

 

 

 

 

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Alzheimer’s Roundup

22 Sunday Jan 2017

Posted by Ann Napoletan in Advocacy and Awareness, Care Options, Diagnosis, Early Onset, Expectations, Face of Alzheimer's, Prevention, Round Up

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alzheimers, alzheimers diet, caregivers, caregiving, dementia, dementia village, living with alzheimers

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Who will care for the caregivers?

“There are some 40 million Americans like my patient’s daughter. Every day, they help a parent, grandparent, relative or neighbor with basic needs: dressing, bathing, cooking, medications or transportation. Often, they do some or all of this while working, parenting, or both. And we — as doctors, employers, friends and extended family — aren’t doing enough to help them.”  ~Dhruv Khullar, M.D.      Read full article

After the diagnosis…

You’re worried. Your mom has shown increasing forgetfulness for months. She even got lost going to the grocery store she frequents. You hoped things would resolve themselves, but instead, they kept getting worse. You took her to the doctor, hoping the problem was due to a bad interaction of her many medicines or a treatable infection. Instead, you got the dreaded diagnosis: Alzheimer’s. Now what?    Read full article

Dementia Village coming to San Diego

A San Diego nonprofit is taking an unorthodox approach to help seniors cope with Alzheimer’s disease. It’s building a village for them to spend time during the day. It’s not residential. But the village is modeled on San Diego in the 1950s, complete with vintage cars, period music, payphones and shops from the pre-shopping mall, pre-Wal-Mart era. The nonprofit says research suggests this type of visual reminder might improve cognitive function and quality of life of Alzheimer’s patients over 65.   Read full article

Eating for good brain health

“Diet absolutely does play a role. The brain is like any other organ that is susceptible to (foods) that can protect against oxidation damage. … Think of oxidation like a fire getting started. These (good) foods act like little tiny fire extinguishers that help put out those fires that otherwise would cause damage leading to loss of brain function.” ~Liz Applegate, Professor, UC Davis    Read full article

Living with early stage Alzheimer’s

“These days my ministry is Alzheimer’s. I am so much happier now that I’ve accepted my diagnosis. There’s a stigma associated with memory-loss disorders and oftentimes people are afraid to ask for help; I believe my calling is to help reduce that shame. You don’t have to be embarrassed to have Alzheimer’s.”  ~Rev. Cynthia Huling Hummel, D.Min  Read full article

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This Week in Alzheimer’s

05 Saturday Nov 2016

Posted by Ann Napoletan in Advocacy and Awareness, Call to Action, Caregivers, Face of Alzheimer's, Galaxy A List, Helpful Resources, Inspiration, November-National ALZ Awareness Month, Research, Round Up, Support system, Treatments and Therapies, USAgainstAlzheimer's

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a list, alzheimers, alzheimers news, alzheimers research, alzheimers support, alzheimers week in review

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New Alzheimer’s/Cognitive Impairment Benefit from CMS!

On November 3, 2016, it was announced that the Centers for Medicare & Medicaid Services (CMS) has finalized its decision to pay for cognitive and functional assessments and care planning for patients with Alzheimer’s disease and other cognitive impairments. This milestone marks the first time people living with Alzheimer’s disease will have paid access to care planning with a medical professional. Read more here.

Does Deep Brain Stimulation Boost Memory in Alzheimer’s Patients?

Researchers at Toronto Western Hospital and Johns Hopkins University are hopeful about a clinical trial involving deep brain stimulation. One might think of this as a pacemaker for the brain; electrodes are implanted in the brain and deliver a steady stream of electrical impulses to the part of the brain that regulates memory. The study is currently moving into its third and final phase.  Read more here.

Greg O’Brien Honored

Journalist, author, and advocate Greg O’Brien received the inaugural Bea Lerner Valor Award at September’s third annual UsAgainstAlzheimer’s Out of the Shadows Dinner. The award is given to a person living with dementia and is named to honor the mother of UsAgainstAlzheimer’s co-founder, Trish Vradenburg. Read more here. 

National Alzheimer’s Awareness Month

The White House issued a Presidential Proclamation declaring November 2016 as National Alzheimer’ Awareness Month. Read more here. 

Alzheimer’s Talks: Dr. Rudy Tanzi

The transcript and recording from October’s Alzheimer’s Talks call have been posted. The call featured leading researcher, Dr. Rudy Tanzi, who spoke in depth about his new work on a microbial hypothesis of the causes of Alzheimer’s disease.   You can find the transcript and recording here. 

Easy Actions You Can Take to Make a Difference!

  • Take 30 seconds to provide hope to others touched by Alzheimer’s!! Introducing Adversity 2 Advocacy’s Project Hope Exchange! Learn more here.
  • Join the A List 1000 today! It just takes 5 minutes, and gives you an opportunity to help shape the future. Learn more here.
  • Participate in the Health-eBrain Study to help advance the cognitive health of caregivers. Learn more here.
  • Participate in a caregiver study being conducted at Xavier University. Learn more here. 

Looking for Support?

Join the UsAgainstAlzheimer’s Facebook Support Community! We have members all over the world who possess a vast amount of experience and who understand what you’re going through. Although each of our stories is unique, we’re bonded by a common experience – Alzheimer’s (or some other form of dementia). The Community provides a safe place to share fears, frustrations, and the moments of joy we all hunger for.  Find us here.

Book Giveaway

Last but not least, click here to enter for a chance to win a copy of Chicken Soup for the Soul: Living With Alzheimer’s and Other Dementias. In the book, you’ll find 101 stories that will inspire, validate, and comfort you. Winner will be drawn Friday, November 11.

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The Long and Winding Road

Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

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