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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: familial alzheimers

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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