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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Advocacy and Awareness

An Alzheimer’s Anthem: Remember Me

24 Saturday Jan 2015

Posted by Ann Napoletan in Advocacy and Awareness, Cure Alzheimer's Fund, Events, Face of Alzheimer's, Fundraising, Inspiration, Mom, Music and Art, Research, Ruminations

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#rememberme, alzheimers, alzheimers song, chris mann, cure alzheimers fund, dementia, remember me, rudy tanzi

#remembermeWhile there are plenty of things that stir my emotions, music can really send me into a tailspin. I still haven’t listened to the Glen Campbell song, I’ll Be Me. One day I will, but I’m not ready yet.

Over the past day or so, I’ve seen a couple of Facebook posts regarding a new song and video by Chris Mann, a 2012 finalist on The Voice.

Remember Me is the result of a collaboration between Mann and a rather unlikely suspect, world-renowned Alzheimer’s researcher, neuroscientist Rudy Tanzi.

A recent Rolling Stone article describes how the two met and what inspired the partnership. (Call me crazy, but I feel as though this could be a game changer with regard to bringing Alzheimer’s out of the shadows! Who could have imagined uttering the words “Rolling Stone” and “Alzheimer’s” in the same sentence?)

Tonight as I was driving home, I shook off my apprehension and clicked the play button to listen to this remarkably powerful song for the first time. Within seconds, I found myself sobbing – it’s difficult to describe the raw emotion I felt as the beautiful lyrics cut into my heart. A rush of piercing grief, intense regret, and tremendous loss washed over me – body and soul. It took my breath away in every sense of the word. I couldn’t help but imagine my mom…

I know there’ll come a day, when I have gone away / And the memory of me will fade / But darling think of me, and who I use to be / And I’ll be right there with you again / I hope I’m one thing worth not forgetting / Tell me that you’ll never let me go

You can watch the poignant Remember Me video below, but please click over to iTunes and buy the single, then encourage your friends to do the same. A portion of proceeds will benefit the Cure Alzheimer’s Fund.*

 

Join the #RememberMe movement. Learn more -> here

*Since its inception in 2004, the Cure Alzheimer’s Fund (a 501(c)(3) nonprofit organization) has contributed $27.4 million to research. The founders cover all overhead expenses, and 100% of donations go directly to research. Dr. Rudy Tanzi is a key member of the organization’s research consortium.

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Demand Action Now: Help End Alzheimer’s

15 Thursday Jan 2015

Posted by Ann Napoletan in Advocacy and Awareness, USAgainstAlzheimer's, Washington

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Tags

alzheimers, Alzheimers advocacy, dementia, state of the union

Please take a couple of minutes to lend your support; USAgainstAlzheimer’s makes it easy! Visit http://salsa3.salsalabs.com/dia/track.jsp?v=2&c=J6sJlT6rpSFpIBC3FnFwnzRTy45204Z7

*** From the Desk of George Vradenburg ***

In just five days, President Obama will deliver the State of the Union address. Washington and the nation will pause to hear the president’s vision, and we need him to publicly commit to stopping Alzheimer’s. The nation already has adopted a national plan that sets as goal one preventing and treating Alzheimer’s by 2025. But this is now just 10 years away and much work remains.

President Obama could issue a “moon shot” for ending Alzheimer’s, like John F. Kennedy did for a moon landing in 1961. But it won’t happen absent a relentless push by those impacted by this dreaded disease.

Help us plant a flag for ending Alzheimer’s by adding your voice now. Join with our USAgainstAlzheimer’s networks and thousands of activists nationwide to encourage the president to address Alzheimer’s during his speech.

Click here to take a moment to ask President Obama to set a marker for ending Alzheimer’s in his State of the Union on Tuesday.

The annual global cost of treating Alzheimer’s in 2010 was an estimated $604 billion –one percent of global GDP. Without new treatments, the number of Alzheimer’s cases and its associated costs are predicted to quadruple in the next 40 years.

That’s not even mentioning the personal toll it takes on families. More than 5 million Americans suffer from this cruel, unforgiving disease, and their loved ones suffer along with them.

We can’t wait for action. If we are going to stop this terrifying trajectory, we need to get bold. We need leadership.

President Obama has a chance to cast a vision for ending Alzheimer’s during his speech. We need to let him know how important it is that he does.

Add your name: Call on President Obama to address the threat of Alzheimer’s in his State of the Union address.

There’s a path to a cure, but it demands commitment from everyone. If we get it, we’ll beat this disease.

Thank you,

George

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Alzheimer’s Caregiving: Thoughts for the New Year

28 Sunday Dec 2014

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregiver Burnout, Caregivers, Guilt and Regrets, Helpful Resources, Ruminations, Support system, Tips

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Tags

alzheimer's books, alzheimers, alzheimers caregivers, alzheimers support, caregiver stress, caregiving, dementia, respite care

As 2014New Year 2015 draws to a close, I’ve been thinking a lot about the pressure caregivers feel to be perfect. I see this on a regular basis through my role as co-moderator of the USAgainstAlzheimer’s online support community. Family members find themselves drowning in guilt because they’ve set unreasonably high expectations for themselves; often these expectations are so lofty that no human being could possibly live up to them.

I think an admirable goal for 2015 is to be more gentle with yourself. Pay attention to your self-talk, and when you realize you’re beating yourself up, make a conscious decision to S-T-O-P. I know it’s easier said than done, but try and have faith in the decisions you make, for there is no doubt you are doing the very best you can.

As don Miguel Ruiz reminds us in The Four Agreements, your “best” will be different from day to day, perhaps from hour to hour. When you are sick with a winter cold or exhausted due to lack of sleep or simply at your wit’s end, your best will be different from when you are feeling 100%. That is a fact, and that, my friend, is okay.

Here are four things I hope you’ll consider in the coming year.

  • Join a support group. Check with your local Alzheimer’s Association chapter or look into an online support community like the USAgainstAlzheimer’s Facebook Community. There is immeasurable comfort in simply knowing you aren’t alone. I resisted seeking support during my mom’s illness, and by doing so, I shouldered more on my own than I needed to.
  • If you care for a loved one at home, seek respite. There is no shame in caring for yourself. In fact, it’s a necessity. Your ability to do what’s best for your loved one depends on your own physical, emotional, and mental wellbeing. The National Respite Locator is a wonderful place to start when searching for assistance.
  • Check out Seasons of Caring: Meditations for Alzheimer’s & Dementia Caregivers. This one-of-a-kind book was recently published by ClergyAgainstAlzheimer’s (CA2). Available for only $3.99 on Kindle and less than $15 in a lovely paperback edition, all proceeds benefit CA2 in their work to support caregivers and stop Alzheimer’s. This interfaith book contains over 140 original meditations by 70 leaders in the faith community, care specialists, and caregivers. I’m proud to be a contributor to a book I believe will provide infinite amounts of hope and encouragement to dementia caregivers around the world.
  • Do something to raise awareness or support other caregivers. Whether you simply share an article on social media or write a blog post, participate in your local Walk to End Alzheimer’s, or offer support to a fellow caregiver online or in person, paying it forward will give you a sense of purpose. The single thing that has helped me most in this journey has been reaching out to others.

I wish each and every person who visits this page a blessed 2015. May you find support, comfort, and peace of mind in the coming year.

With love,
Ann

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Marilyn, BA (before Alzheimer's)

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