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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: alzheimers inspiration

Think Like a Scientist: Inside Alzheimer’s Disease

05 Sunday Nov 2017

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Films, Inspiration, Research, Video

≈ 1 Comment

Tags

alzheimers, alzheimers inspiration, alzheimers research, alzheimers story, greg obrien, rudy tanzi, think like a scientist

Once or twice in a lifetime, if we’re lucky, we have a chance to meet a real life hero.

Greg O’Brien, author of OnPluto: Inside the Mind of Alzheimer’s, is one of those people for me. I had followed his story for years and finally had the privilege of meeting him a few years ago at the UsAgainstAlzheimer’s Summit in Washington. Greg’s courage, humor, and willingness to share his story in such an honest and unfiltered way, combined with his journalistic excellence, are beyond inspiring.

Also featured in this short film is Dr. Rudy Tanzi, arguably the leading AD scientist/researcher in the United States. Dr. Tanzi co-discovered all three early-onset familial Alzheimer’s disease genes and, as leader of the Alzheimer’s Genome Project, discovered several others. In 2014, he and Dr. Doo Yeon Kim, used Alzheimer’s disease genes to create “Alzheimer’s in a Dish,” effectively taking Alzheimer’s research to a new level.

Please take six minutes to watch this moving short film.

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Acceptance

26 Wednesday Oct 2016

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

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Tags

alzheimers acceptance, alzheimers inspiration

path-to-joy-acceptance

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Love and Alzheimer’s

25 Saturday Oct 2014

Posted by Ann Napoletan in Caregivers, Early Onset, Face of Alzheimer's, Guests, Inspiration, Smiles

≈ 4 Comments

Tags

alzheimers, alzheimers inspiration, dementia, early onset alzheimers, love and alzheimers, younger onset alzheimers

I’m so happy to share this Q&A and guest post from Bruce Williams, a fellow Buckeye, Alzheimer’s advocate, and Chicken Soup for the Soul: Living with Alzheimer’s and Other Dementias contributor.


How did you and Ann meet and fall in love?

Bruce:  Ann and I are originally from Ohio. Born 8 days apart, we led eerily similar lives. Previously married for 12 years, divorced for four, we found each other in Ft. Lauderdale, FL. Married a mere six weeks after our first date, I can honestly say that we were soulmates from the beginning. Our life together has been one of abiding love, with a healthy dose of passion thrown in.

We had two sayings, “We’ll  never let anyone steal our joy” and, “We never want to look back on our lives and wish we had done ____________”. After the last of her boys were off to college, we moved up to a flying community near Daytona beach where she got her pilot’s license. Always the adventurer, she and a friend entered the Women’s Air Race Classic and came in second.

At what point did you know something was wrong? How was Ann diagnosed?

Bruce: Around five years ago, Ann said she couldn’t taste her food as well. We attributed it to a cold she had a few weeks previously. Her taste, along with her sense of smell, has never been the same since. As far as I can tell, her cognitive problems started about four years ago, if not before.

After several neurological tests, she was diagnosed with Mild Cognitive Impairment.  A personal friend of ours gave her the diagnosis of Alzheimer’s Disease after an MRI in his neurological practice, and the elimination of every other condition.

Why did you start writing? 

Bruce: My emotions ran between denial, fear, hopelessness and rage against a cruel God who, after giving the greatest gift I’ve ever had, was stealing her away.  One brain cell at a time.

Seeking some peace, and wanting to tell her story, I started to write. Putting my thoughts down has helped me understand the disease and open my heart to what unconditional love is all about when faced with the unknown.

 

Bruce was kind enough to share this touching piece about the reality of Alzheimer’s. Feelings of sadness and loss, of course. But a change in perspective allows him to appreciate Ann’s beauty – and their love – in a new light. 

The Diamond

by Bruce Williams

I often get a sadness not unlike mourning. It is not the anguish one feels upon the sudden death of a loved one but a drawn out process that develops a life of its own every time a new event or “milestone” intrudes on our lives.  Morphing into a dark presence that threatens to steal the joy I’ve always had with Ann, I finally break free for a time and realize its way too premature to mourn.

I do feel, however, that small parts of her are lost forever. She’s not the same girl I married 27 years ago but, in view of what she’s going through, I love her more now than I did at any point in our marriage.

As her personality changes ever so subtly, I can liken the experience to a jeweler examining a diamond. Accustomed to viewing it only from the top, One might notice a few flaws. Small pieces of carbon dimming the reflection, and to some critical eyes, reducing its value.  I realize that, while I can’t alter her position, I can change my own perspective.

By peering at this precious gem of a lady from a different angle, I discover a new treasure, never before seen.  Suddenly, those tiny specks are lost in the sheer brilliance of a magnificent cut, polished by the Master Craftsman Himself, for me, our family and all those who love this wonderful woman to enjoy.

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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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