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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

Big Pharma: Principles vs. Profit

21 Wednesday Oct 2015

Posted by Ann Napoletan in Advocacy and Awareness, Behaviors, Caregivers, Helpful Resources, Mom, Pharma, Ruminations, Treatments and Therapies

≈ 4 Comments

Tags

alzheimers, dementia, dementia big pharma, off label anti-psychotics and dementia, pharma, psychotropic drugs and dementia, risperdal

“Med changes are always a coin toss. Sometimes they really upset the apple cart.  In fact, the [house] doc had increased one dosage from 0.5 mg to 1.0 mg a couple of weeks ago and it wreaked absolute havoc on her.  She did nothing but sit and stare into space during waking hours, wasn’t eating, had no reaction when Jess or I walked in, and was completely non-verbal…”

The above snippet is from a post I wrote in 2011, and the drug mentioned was risperdal.

I’ll forever wonder how much more harm than good was done by the various and assorted medications Mom was given over the course of her battle with Alzheimer’s. Once it was clear that Aricept was no longer doing a damn thing, prescribing medications to control worsening symptoms was nothing more than a crap shoot.

Warning: Steep Drop Ahead

Psychotropic drugs are a slippery slope. Anti-psychotics, anti-depressants, anti-anxiety, mood stabilizers. Can you imagine what the various and assorted combinations, not to mention constant changes, are doing to our loved ones?

Depakote, Risperdal, Ativan, Lexapro, Buspar, Celexa, Zyprexa, trazodone, and the most dreaded Haldol. Just a sampling of the psych drugs mom was on at one time or another.

It’s the classic chicken and egg; the symptoms and behaviors worsen and a drug is prescribed. It works for awhile, then seems to lose its effect so they try something else. The cycle continues. At what point do the drugs become a major part of the problem instead of part of the solution?

All in the Name of Profit

One of the most disturbing notions is the increasingly “acceptable” off-label use of these drugs.

Susan Macaulay recently wrote several articles on this very topic. The information shared is absolutely appalling, and underscores the reason our drug companies are often looked upon with such mistrust and even disgust. Sadly, as illustrated by the 2008 UK report Susan references, this is also nothing new.

At a minimum, we owe it to ourselves and our loved ones to be informed – thank you, Susan, for compiling this important material.

The truth and lies about risperdal and greed have begun to unfold and it’s not a pretty picture (9/17/15)

10 things Johnson & Johnson probably wishes the world didn’t now know about the way it marketed risperdal (9/18/15)

Find the lady in the lies: a shell game of side effects and suffering for the sake of antipsychotic sales (9/20/15)

7 things you should know about how and why antipsychotics are inappropriately prescribed to people living with dementia in care facilities (9/26/15)

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Susan Macaulay cares for her mother who is living with Alzheimer’s and is a recognized dementia care expert. Macaulay is creator and curator of SheQuotes, My Alzheimer’s Story,  Amazing Women Rock, AmazingSusan.com, and Succeed With Susan. She is a feminist, global citizen, lifelong learner and the author of Everyday Feminine Wisdom and soon-to-be-published “the dogs’ breakfast.”

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Presidential Candidates Carly Fiorina & Ben Carson on Alzheimer’s

17 Saturday Oct 2015

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Face of Alzheimer's, Washington

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Tags

alzheimers, alzheimers caregivers, alzheimers funding, alzheimers research, ben carson, brenda bouchard, candidates on alzheimers, carly fiorina, dementia, honoring ken

New Hampshire resident, Brenda Bouchard, has a full plate and then some! She cares for her husband who is living with younger onset Alzheimer’s, as well as her 89-year-old-mother who also has Alzheimer’s.

All of this, yet she’s managing to find time to attend town halls in her state – and she isn’t just there to observe! To date, Brenda has been called on to ask 11 candidates about their plans regarding the Alzheimer’s crisis.

If you’ve missed the previous posts, click here to see all of them. Brenda has asked her question of Clinton, Kasich, Santorum, Bush, Sanders, Trump, Paul, Walker, and Rubio. In this post, you’ll see and hear her address Carly Fiorina and Ben Carson.

Take a look and draw your own conclusions.


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Happy Birthday, Mom…

12 Monday Oct 2015

Posted by Ann Napoletan in Advocacy and Awareness, Grieving, Inspiration, Life After Caregiving, Mom, Ruminations, Smiles

≈ 4 Comments

Tags

#endalz, alzheimers, Alzheimers advocacy, alzheimers awareness, dementia, missing mom, moms birthday, non-profit announcement, remembering mom

October 12, 2015…your 79th birthday!

We will be celebrating you today… all day, from sun up to sun down.

Not a moment passes that I don’t miss you with all my heart. Still, it’s a relief to know you’re once again happy and whole – no longer in the cruel clutches of Alzheimer’s.

Today seems like the perfect day to announce that your legacy will continue to live on through a non-profit I’ll be launching soon. It’s an idea that has been rolling around in my head for too long, and it’s time to make it a reality.

There is much work to be done, but I know you’ll be with me every step of the way. Your presence will help guide the project as I begin to define our mission, develop strategies for fundraising, and determine where to direct those funds for maximum impact.

Until I draw my last breath, I’ll continue this fight.

Happy Birthday.

With all my love,
Ann

#EndAlz

 

 

 

 

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Marilyn, BA (before Alzheimer's)

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