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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Ruminations

Acceptance

26 Wednesday Oct 2016

Posted by Ann Napoletan in Caregivers, Inspiration, Marilyn's Legacy, Meme, Ruminations, Uncategorized

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alzheimers acceptance, alzheimers inspiration

path-to-joy-acceptance

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Fighting Alzheimer’s in Columbus & Washington!

25 Sunday Sep 2016

Posted by Ann Napoletan in Advocacy and Awareness, Events, Ruminations, USAgainstAlzheimer's, Walk to End ALZ, Washington, World ALZ Month

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alzheimers, Alzheimers advocacy, dementia, national alzheimer summit, out of the shadows, usagainstalzheimers, Walk to End Alzheimer's

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-2015 Walk

There’s a feeling of advocacy in the air! Tomorrow, I’ll don purple from head-to-toe and participate in my 8th Walk to End Alzheimer’s!! I’ve been on the planning committee for the past couple of years, so it’s exciting to be walking again. I look forward to taking everything in and connecting with the meaning, emotion, and excitement of the event. It’s looking like 81 degrees and sunshine – a perfect day!

Then, it’s on to the 3rd Annual UsAgainstAlzheimer’s National Alzheimer’s Summit in Washington. The Summit is a two-day event jam packed with panel discussions that include some of today’s most important voices in Alzheimer’s care, research, and advocacy.

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First Lady Laura Bush will be the keynote speaker for the Out of the Shadows dinner where House Minority Leader Nancy Pelosi and Senator Kelly Ayotte will be honored for their commitment to fighting Alzheimer’s disease. Advocate Greg O’Brien, author of On Pluto: Inside the Mind of Alzheimer’s, will also be honored for the hope and courage he displays each day in his own battle against this disease.

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-2015 Summit

 

Capping off the event, we’ll spend a day on Capitol Hill meeting with Senate and Congressional offices, telling our personal stories and asking for additional funding in the FY 2017 budget as well as support of the EUREKA Act and the Alzheimer’s Beneficiary and Caregiver Support Act.

The Summit and Hill Day events are certain to be educational, energizing, and filled with hope and determination. Sharing these two days with such devoted and passionate human beings – all focused on the same goal – is truly inspiring. Be sure to look for the hashtags #StopAlzWithAction and #WeWontWait to keep up on what’s happening!

Here are a few photos from 2014 and 2015.

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Alzheimer’s & Gratitude: A Matter of Perspective

15 Wednesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, alzheimer's & brain awareness month, Blogging, Caregivers, Expectations, Grieving, Helpful Resources, Inspiration, Life After Caregiving, Marilyn's Legacy, Mom, Ruminations, Smiles

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alzheimer's & brain awareness month, alzheimers, alzheimers gratitude, caregiver grief, caregivers, dementia, gratitude

gllogoJune is Alzheimer’s & Brain Awareness Month in the United States, and I’m grateful to my new friends at the worldwide Network for Grateful Living for helping shine the spotlight on Alzheimer’s!

After being introduced to their site, I was inspired to write a piece about Alzheimer’s and gratitude, two things we don’t necessarily see as going hand in hand. We know this disease brings with it pain and sorrow, shattered dreams, and disappointments over lost opportunities. We mourn uniquely beautiful lives cut short, and we struggle to say goodbye to what could (and should) have been. It’s a journey none of us would choose.

However, like anything in life, perspective matters. Some days, I could easily curl up in a blanket and sob for hours about how unfair it is that I began to lose pieces of my mom before I was out of my 30’s. Even as I write these words, I feel tears well up in my eyes.

Yet Alzheimer’s also made me a more compassionate person. It opened my eyes in many ways – to life’s most simple pleasures, to the fact that my story might actually help others, and to the idea that I had talents and abilities that had gone untapped and might be valued in venues I had never considered.

sunset-over-mountainsLiving through the experience reminded me that my time on earth is limited and there’s no time like the present. It made me sweat the small stuff a bit less. It even made me realize I could leave behind a very comfortable 27-year career with a Fortune 100 company to work for a much smaller non-profit with a strong mission and values I believed in.

Of course, I would trade every last one of those things to have my mom back. Of course I would. But having her back in this life isn’t an option, so I the best way I can honor her is to go on and live the best life I can. The best way I can keep her spirit alive is to do what I now feel is my life’s work, which includes the recent launch of a registered 501(c)(3) non-profit organization, Marilyn’s Legacy: A World Without Alzheimer’s.

I wish I’d grasped the idea of Alzheimer’s and gratitude much earlier in our journey, but I guess that’s what growth is all about. Fortunately, with time, experience, plenty of soul searching – and an ocean of tears – it came while she was still alive. The piece I wrote for Gratefulness.org is all about what a blessing that was. I hope you’ll take  few minutes to visit the site to read and share Alzheimer’s Taught Me to be Grateful.
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Bookmark the site and check them out on Facebook as well. Be sure to read about Brother David and the fascinating life he led before co-founding the Network for Grateful Living. This has become one of my favorite places for daily inspiration!

 

 

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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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