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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

Tuesday’s Gleanings

12 Tuesday Feb 2013

Posted by Ann Napoletan in "Super Foods", Advocacy and Awareness, Blogging, Caregivers, Diet, Helpful Resources, Humor, Inspiration, Research, Tips

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picWell, it seems my self-diagnosed ADHD is in full swing tonight. I sat down over an hour ago to finish my Caregivers piece for tomorrow… and lo and behold, I haven’t even opened the document yet.

BUT…. I found another wonderful resource for Alzheimer’s and dementia caregivers and advocates. Check out The Dementia Queen… “Insight with a dash of humor on the side.”

The DQ, Sue Paul, is an occupational therapist and geriatric specialist. She works with ALZ and dementia patients, and, like many of us, created her blog in hopes that her experiences can help those struggling with the disease(s). Kudos to Sue!

On another note, and speaking of great kudos, I received this message from Max Wallack today:

“Unfortunately, even with the support of so many tireless Alzheimer’s advocates, my cause for Alzheimer’s research is not the winner of the $10,000 award in the Kids Who Give contest. However, the contest was a wonderful experience because I came to have contact with so many people who share my passion to make a difference in the course of this disease. Today, one supporter even donated $5,000 of his private funds for Alzheimer’s research at BUSM. I will continue to work hard and pursue my lifelong goal to tackle this disease on multiple fronts, encompassing compassionate care of those afflicted, support for weary caregivers, and research to find treatments and, perhaps, a cure.”

On behalf of Alzheimer’s/dementia caregivers, advocates, and families, I’d like to congratulate Max not only on his efforts in the Kids Who Give contest, but really on all of his endeavors. I don’t doubt for a second that we’ll be hearing great things about this young man. His future is bright, and we’re thankful that he has committed himself to the ALZ cause.

And, last but not least… (I warned you, didn’t I?? ADHD!!)   Have a glass of red wine while you read this article –> Red Wine Provides Hope for Alzheimer’s Sufferers.

Researchers at the University of Leeds in the UK are finding that resveratrol, a compound found in red wine and green tea extracts, is not only good for the heart, but may also slow the progression of ALZ. The study, published in the Journal of Biological Chemistry, suggests that resveratrol prevents the formation of amyloid protein clumps which attach to brain cells, ultimately causing them to die.

So there you have it! In less than 400 words, we’ve met a Dementia Queen, celebrated an amazing young scholar and role model, and touted the benefits of red wine. How’s that for variety!?

~Goodnight friends.

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Great Strides in Research

28 Monday Jan 2013

Posted by Ann Napoletan in A Place for Mom, Advocacy and Awareness, ALZ Assn - National, ALZ Assn Central Ohio, Genetic Testing, Helpful Resources, Research, Washington

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While we would all love nothing more than for a cure to be found tomorrow, we should realize that ALZ research really has come a long way in recent years. An informative article from A Place For Mom discusses some of the newest techniques being used for early detection. From brain imaging and genetic markers to examining proteins in blood and cerebrospinal fluid, researchers are making progress every single day.

These advances underscore the importance of supporting organizations like the Alzheimer’s Association as they work to increase awareness and raise research dollars. Another critical part of the equation, of course, is reaching out to your legislators to stress the urgency of this issue.

Not sure who your Senate and House representatives are? Click a link to find your reps:  —>   U.S. Senate  or  U.S. House

And don’t forget to read the latest on ALZ detection: Early Detection Alzheimer’s Tests: What’s New?

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The Loss of an Alzheimer’s Champion

19 Saturday Jan 2013

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Celebrities, Inspiration

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Pauline Friedman Phillips, more commonly known as Abigail Van Buren – or Dear Abby – passed away on January 17. She was 94 years old and had suffered from Alzheimer’s for over 15 years.

I remember hearing a lot about Dear Abby, probably back in the 70’s, but never really paid much attention. As I’ve been reading about her the past couple of days, I’m finding she was actually quite an extraordinary woman. In 1956 at the age of 38, she approached the editor of the San Francisco Chronicle and informed him that the paper’s advice column was boring. She submitted samples of her work and was promptly hired to take over the column. In 1956, that was a pretty bold move for a female! Let’s face it, the 1950’s was the decade of June Cleaver, a far cry from the career women of this millennium (absolutely no offense to stay at home moms, but it was a different world sixty years ago!).

Not afraid of ruffling feathers, Mrs. Phillips was an early supporter of gay rights, and when asked her opinion on Viagra, she called it “wonderful.” While Dear Abby was once known for advising against divorce, she credited her readers with teaching her that under certain circumstances, it was the only healthy choice. Willingly admitting that she could be cocky, she also showed great compassion for her readers. Upon receiving letters from people that sounded suicidal, she would pick up the phone and call them, encouraging them to seek help.

I had no idea that she was also a very early advocate for Alzheimer’s disease, again showing her willingness to tackle tough topics. In 1980, she published a letter from a woman seeking advice after her husband had been diagnosed with ALZ. Abby assured the distraught woman that she wasn’t alone and told her about a newly formed organization called the Alzheimer’s Association. Within two weeks of that column’s publication, the Association was flooded with inquiries.

Over the years, Abby continued to help connect people with the ALZ resources they needed, so there was some irony in the fact that she herself began to show signs of the disease in the mid 1990’s. Lonnie Wollin, one of the founders of the Alzheimer’s Association calls her impact on ALZ advocacy “profound.” She credits Mrs. Phillips with boosting awareness and helping enable the Association obtain funds to support families, educate caregivers, and ultimately increase the country’s research budget from $2 million in 1980 to over $450 million today.

So from all of us who have personal experience with this unrelenting disease, and for all whose life will be touched by it in the future: Thank you, Dear Abby. May you rest in peace. ♥

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