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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Face of Alzheimer’s

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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Personhood: The True Essence Remains

19 Saturday May 2018

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Inspiration, Marilyn's Legacy, Mom

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alzheimers, alzheimers awareness, dementia, Mom, personhood

Personhood. It’s important to know and always remember that the person living with dementia never loses their true essence.

All of these photos were taken during the course of our Alzheimer’s journey, some very early on and others in the final years. Although the painful moments became more frequent and lasted longer as the disease progressed, and despite the delusions, paranoia, hallucinations, agitation, anger, depression, and episodes of acting out, Mom never stopped showing us little reminders that she was still very much “in there.”

Long after she lost the ability to communicate verbally, she found ways to joke and playfully tease. With time, it took more effort to reach her, but when we did, her mannerisms, gestures, and facial expressions told us she was very much “Still Marilyn.”

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Oh how the years go by…

06 Saturday Jan 2018

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Life After Caregiving, Marilyn's Legacy, Mom, Ruminations, Saying Goodbye

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alzheimers, celebration of life, dementia, grief and loss, mothers and daughters

Five years ago today, we celebrated my mom’s life; a very special day, that cold Saturday in January. Italian food, free-flowing wine, many dear friends and family members, love, laughter, and of course, tears. The gathering culminated in a balloon release that she would have loved.

The sight of those magnificent pearlescent purple and white balloons floating skyward literally took my breath away. It was a symbolic and bittersweet moment I’ll always remember. She had finally been released from the agonizing pain that plagued her in the final stage of Alzheimer’s, yet I had lost my beautiful mama.

Gratitude and the searing ache of loss intertwined in a way I never realized possible.

As the years go by, it almost feels like a dream. It’s hard to imagine that our decade-long journey was real, and that this disease – THIS brain ravaging monster – would take such a strong, intelligent, independent woman.

Here’s to you, Mom. There isn’t a day that goes by that you aren’t on my mind.

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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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