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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Alzheimers.net

Week in Review…

05 Friday Jul 2013

Posted by Ann Napoletan in Advocacy and Awareness, Alzheimers.net, Blogging, Caregivers, Caregivers.com, Events, Films, Genetic Testing, Helpful Resources, Inspiration, Research, Tips, Walk to End ALZ

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fireworks

Hope everyone had a wonderful Fourth of July! If yours was dry, that was a bonus! The Midwest is on day #14 of rain… but on the “bright” side, my plants are thriving!

Angel’s Perch

There’s been lots going on, but the thing I’m most excited about is the strong possibility of hosting a screening of Angel’s Perch right here in Columbus! The feature length film about a West Virginia family’s struggle with Alzheimer’s premiered last month in Charleston, and it’s been receiving rave reviews.

Set in scenic Cass, WV, this indie film which began as a Kickstarter project is the brainchild of J.T. Arbogast. The story is loosely based on his own family’s experience, and for Arbogast and his wife, Kim Dilts, it was a labor of love from start to finish.

For the Alzheimer’s community, it’s a wonderful way to promote awareness. In a recent  Charleston Gazette article, Arbogast was quoted as saying, “…I think it opens up that dialogue in a safe place. For the Alzheimer’s community, I think it’s a different way for them to engage their constituents.”

At present, I’m working with the great folks at Tugg.com on getting a screening arranged for sometime in August. Things are looking good, and I hope to receive final approval very shortly. Assuming it comes to fruition, our event will serve as a fundraiser for this year’s Walk to End Alzheimer’s, but I’ll share more on that later. Stay tuned!

Clinical Trials

This week on Alzheimers.net, I focused on the topic of clinical trials. Here’s a question for you: If you had genetic testing as part of a research study in which disclosure of results was optional, would you want to know the results? I was surprised to find my answer much different than it would have been a year ago.

Doing the research for this piece also reminded me that trials and research studies come in many flavors. Although we tend to immediately think of experimental drugs when the subject is mentioned, there are studies on diet, exercise, and other alternative treatments as well. The article includes links to some great resources you can visit to learn more. It’s definitely a thought-provoking topic.

Lotsa Helping Hands

Friday on Caregivers, we take a look at Lotsa Helping Hands – a powerful (free) web service and iPhone app created by Barry Katz. This tool provides caregivers with an easy way to ask for help when they need it and allows volunteer helpers to match their available time and talent with requests for assistance. Essentially, the site lets users build their own “caregiving communities” where they can share updates, store vital information, post requests, events, photos, blogs, and much more.

Perhaps most interesting is the story of Mr. Katz and how this service came to be. It’s a truly inspiring testament of how one can take heartbreaking tragedy and “make it count” for something.

That’s all for the moment. I’ve got lots of irons in the fire and good stuff to come, so stop back soon. For now, enjoy a safe and happy holiday weekend…

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Active Halo GPS

01 Monday Jul 2013

Posted by Ann Napoletan in Alzheimers.net, Blogging, Caregivers, Elopement, Helpful Resources, Products, Safety, Technology, Wandering

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hmwLast week, I wrote about another excellent GPS tool designed specifically for the adult market. Active Halo is the culmination of a partnership between ActiveForever and AMBER Alert and provides an easy, convenient method of monitoring your loved one’s whereabouts. The system provides you, the caregiver, with peace of mind, while allowing your memory-impaired loved one to maintain their independence.

Read more –> Active Halo GPS: What Can It Do For You?

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For Each One, There is a Story…

21 Friday Jun 2013

Posted by Ann Napoletan in Advocacy and Awareness, Alzheimers.net

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Today, I received a very poignant comment on Alzheimers.net – here is a snippet of what the reader said, along with a link to an astoundingly moving video. Bakhus reminds us that each one of them has a story. Tissues recommended…. ♥

“Song is called Still a Child, written after placing my mom in long term care after taking care of her for 7 yrs at home. It was written with John and Michele Law and John is singing This is a special video with very personal stories. Alzheimer’s/Dementia has no borders and we must always remember with every person living with dementia there is a story, there is a life full of families, friends, work, careers, activities, hobbies, social engagement, emotions and memories – an individual – a person.” ~Bakhus Saba

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Marilyn, BA (before Alzheimer's)

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