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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Round Up

In Alzheimer’s News: Weekly Roundup

17 Friday Jul 2015

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Early Onset, Face of Alzheimer's, Family, Genetic Testing, Pharma, Round Up, Sandwich Generation

≈ 3 Comments

Tags

alzheimers, alzheimers caregivers, alzheimers drugs, dementia, familial alzheimers, namenda, younger onset

Familial Alzheimer’s at Age 34

Image Source: Montgomery Advertiser

Carrie Richardson – Advocate Extraordinaire Heads to DC. (7/16)

“She’s a 34-year-old single mom of three from Montgomery, who was diagnosed more than two years ago with Early Onset Familial Alzheimer’s, plans to head to Washington, D.C., on Friday to bring awareness to a disease that has taken the life of her grandmother, father, uncles and cousins. All were diagnosed in their 30s.”  ~Kym Klass, Montgomery Advertiser

To read the full article, visit –> http://www.montgomeryadvertiser.com/story/news/2015/07/15/mom-alzheimers-treks-dc-bring-awareness/30207805/

Coming to a Pharmacy Near You: Namenda Generic!

Stock Photo http://www.morguefile.com

At last, a generic form of Namenda (aka Memantine) is finally on the market. This means significant cost savings for families who have had no choice but to pay the exorbitant price for the brand name drug! Bob DeMarco of the Alzheimer’s Reading Room shared more in his July 15 post.

“When Aricept (Donepezil) went generic the price immediately fell from $280 for a 30 day supply to $153. Six months later when other generic drug makers were permitted to offer the drug the price fell to less than $10 for a 30 day supply.” ~Bob DeMarco

To read the full post –> http://www.alzheimersreadingroom.com/2015/07/generic-namenda-is-now-available-for.html

Lost and Found in the Land of Dementia

Image Source: http://www.knopps.com

This is an excellent opinion piece from the NY Times (7/11). I can relate to so much of what the author describes. Once we learn to drop expectations, we begin to see through the Alzheimer’s fog, realizing how much of our loved one is still there. Different, yes, but very much still there. Lost ..and then found. A good characterization.

“I stopped concentrating on the content of her words and, instead, went along with every twist. Once she said she wanted to go somewhere for a picnic. ‘Why, Mom?’ I asked. She said: ‘So we can boil the chicken.’ Rather than grilling her about what she meant, I asked what kind of chicken we should boil and where we should hold this picnic.” ~Steve Knopper

To read the full article, visit–> http://www.nytimes.com/2015/07/12/opinion/sunday/my-mother-lost-and-found.html?smid=fb-share

Missing Jim: The Reality of Alzheimer’s

Image Source: http://www.missingjim.com

If you aren’t a follower of Karen Garner’s blog, Missing Jim, I highly recommend it. Jim Garner was diagnosed with younger onset Alzheimer’s in 2011. He wasn’t even 50 years old. Karen had noticed changes when Jim was 45 and she was just 37; at the time, their children were 3 and 6. Difficult to even fathom, isn’t it?

Now as Jim’s declines, Karen juggles the roles of full-time caregiver to her husband and mother of two young kids still at home. Earlier this week on her blog, Karen shared an update on the frightening turn of events that occurred when Jim recently visited his parents in another state.

As I read her last two posts (7/8 and 7/16), I found myself wondering how I would have handled the situation – I fear it would not have been pretty. Reading about their experience is a stark reminder of just how cruel and unpredictable Alzheimer’s can be.

“Jim had difficulty on the way while riding in the car at one point getting aggressive with my parents. Then he had several severe psychotic breaks during his first full day away, culminating with police, an ambulance ride to the ER and now a stay in a locked psychiatric unit. In Connecticut. While I am in Virginia. And he is confused. And scared. And alone. And a lost soul. I can only understand about every 3 words he says on the phone.” ~Karen Garner

To read the full post –> http://missingjim.com/2015/07/08/elusive-answers/#sthash.v3On5nB0.dpbs

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Did you know….

18 Wednesday Mar 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Cure Alzheimer's Fund, Facts & Figures, Helpful Resources, Round Up, Tips, USAgainstAlzheimer's

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Tags

alzheimers, Alzheimers advocacy, alzheimers awareness, dementia

 
 
 
 
 
 

  • An estimated 200,000 of the 5 million Americans living with Alzheimer’s are under the age of 65. Many are in their 40s and 50s.
  • When you donate to the Cure Alzheimer’s Fund, 100 percent of funds of your gift goes directly to research. The organization’s founders cover all overhead expenses.
  • Women are at the epicenter of the Alzheimer’s epidemic, which is why Maria Shriver recently announced her new initiative, Wipe Out Alzheimer’s (in partnership with the Alzheimer’s Association).
  • The Longest Day is June 21st and it’s not too early to start planning a dawn to dusk activity to honor your loved one and raise Alzheimer’s awareness!
  • A comprehensive list of helpful resources is just a click away!  -> Resources
  • USAgainstAlzheimer’s makes being an advocate a piece of cake by providing EASY actions you can take to make a real difference. Sign up at http://www.usagainstalzheimers.org
  • The Alzheimer’s Association publishes a comprehensive Facts & Figures Report annually. Check it out to learn more.
  • You can call the U.S. Capitol switchboard to make your voice heard! Simply dial 202-224-3121 and ask for your member of Congress and/or Senators. For each office, give your name, explain that you’re a constituent and an Alzheimer’s advocate, and ask to speak with the Health Legislative Assistant. If that person is not available, ask to leave a message. Share your personal story and explain why you feel it’s critical that they support increased funding for Alzheimer’s.
  • The Long and Winding Road is also on Facebook! Stop by our page for your daily dose of inspiration and information!

 

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Round Up: The Latest From Around the Web

26 Tuesday Aug 2014

Posted by Ann Napoletan in Advocacy and Awareness, Books, Caregiver Burnout, Caregivers, Early Onset, Face of Alzheimer's, Helpful Resources, Music and Art, Round Up, Safety, Sandwich Generation, Silver Alert, Technology, Tips, Wandering, Washington

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Tags

alzheimers, alzheimers art, caregivers, caregiving, dementia, sandwich generation, wandering

lasso.gifCheck out these tidbits gathered from around the web over the past week….

Listen to this edition of the Diane Rehm radio show as Emmy award winning journalist, Meryl Comer, talks about her new book, Slow Dancing with a Stranger. Meryl’s husband was diagnosed with early onset Alzheimer’s at age 58, and she cared for him at home for two decades. Dr. Harvey Gralnick led hematology and oncology research at the National Institutes of Health; a brilliant man and a sobering reminder that Alzheimer’s does not discriminate. Don’t miss this poignant and enlightening conversation.

Kudos to U.S. Senator Bob Casey who announced his plans to introduce the Caregiver Corps bill. This legislation is intended to empower community agencies to build and train a pool of volunteer caregivers to provide assistance to families in need. Read more about Casey’s proposed bill in this article from LancasterOnline.

With the percentage of the U.S. population age 65 and older exploding in coming years, what exactly are we doing to prepare? As Anne Hays Egan suggests in this piece for NonProfits Online, communities should be addressing plans for the “Silver Wave” now. Time is of the essence – we can’t afford to wait.

Alzlive shares an interesting article about Evermind, a small device that plugs into wall outlets and connects to various household appliances (e.g. coffee maker, television, bedside lamp). The gadget monitors when each appliance is turned off or on and sends notifications via text message or email. A change in routine serves as an alert to distant caregivers that they should check in to ensure their loved one is okay.

This fascinating piece from The Atlantic explores the emergence of artistic talents after a dementia diagnosis. How is it that someone with severe dementia can sometimes communicate beautifully through music or art? The key is in understanding that while dementia doesn’t impact the entire brain. Undamaged areas may actually “wake up” to reveal these artistic abilities that had been previously suppressed by healthy parts of the brain.

Learn more about Project Lifesaver, a program aimed at finding missing persons and returning them safely to their homes.  Over 1,300 first responder agencies in 47 states participate, and PLI states their recovery times average 30 minutes – 95% less than standard search operations. Members wear a small GPS device that tracks their whereabouts, and rescuers are trained in how to approach and communicate with individuals suffering from cognitive impairment.

In her recent article for MariaShriver.com, Ellen Woodward Potts focuses on the sandwich generation, offering coping tips for caregivers who are stretched too thin. More and more Americans find themselves caring for aging parents while still raising children, and the associated stress can be overwhelming at best and a serious health risk at worst.

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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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