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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Helpful Resources

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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A New Film About Alzheimer’s: His Neighbor Phil

26 Saturday Sep 2015

Posted by Ann Napoletan in Advocacy and Awareness, Caregivers, Face of Alzheimer's, Films, Helpful Resources, Inspiration, Smiles

≈ 2 Comments

Tags

alzheimers, alzheimers awareness, alzheimers movie, dementia, his neighbor phil, zumbrota minnesota

His Neighbor Phil is a work of fiction, but one that very realistically chronicles the life of a family facing younger onset Alzheimer’s. The movie aptly demonstrates the ups and downs millions of families face every single day. From the first frame, it gently draws its viewers in with a heartfelt story that could just as easily be yours or mine.

Scott Thompson, who wrote and directed the film, skillfully peels back the many layers of this difficult subject matter in a brief ninety minutes. Thompson takes us through the full spectrum of emotions from moments of joy and unapologetic laughter through profound sadness – very true to life.

Image Source https://vimeo.com/103831298

Stephanie Zimbalist offers a brilliant performance as Mary, a witty, engaging wife and mother in her late 50’s. As Mary goes about her daily routine, we see poignant moments of clarity that mirror what many of us have witnessed in our own loved ones. At one point, she apologizes for “being so much trouble,” and as viewers, our hearts just sink.

Mary’s gentle, loving husband Harvey is played by Daniel Roebuck. The patience and tenderness he shows as he cares for his wife are exceptionally touching. Harvey exudes a quiet strength and devotion as her partner and protector, and his commitment is unwavering. When he takes Mary back to the local theater they once managed together, he discovers that music triggers something in her. While the music plays, he has his Mary back; this becomes a key element in the story.

Image Source http://www.ci.zumbrota.mn.us

As an adult daughter who watched my mother’s heartbreaking decline at the hand of Alzheimer’s, I found Kristi Knudson’s stinging portrayal of daughter Isabel to be spot on. Though difficult to watch at times, Knudson hit the mark with regard to the frustration, denial, and anger that comes with reluctantly assuming the role as your own mother’s caregiver. By the end of the film, she softens, accepting Mary for who she is now; the viewer is left with a sense that they are finally in a good place.

Supporting roles were brilliantly cast to highlight the depth and complexity of both the storyline and the characters themselves. In particular, Ellen Dolan’s quirky, free-spirited “Charlie” (Mary’s sister) provides bits of clever comic relief as well as some of the most moving moments in the film.

Likewise, Sally Kellerman’s depiction of Mary’s mother, Bernadette, was flawless. While we initially see this character as rather stoic and emotionless, we quickly watch that façade melt away. Although Kellerman’s screen time is minimal, her performance packed a powerful punch.

Image Source http://www.ci.zumbrota.mn.us

His Neighbor Phil proves it doesn’t take a huge budget or the magic of Hollywood to create a beautiful film that inspires hearts and minds. It was shot in Zumbrota, Minnesota, population 3,300, and the citizens of that town provided the majority of the film’s funding along with meals and lodging for the cast and crew.

Apparently this off the beaten path little town in Minnesota is also home to quite a bit of acting talent! A total of 18 local residents appeared in the film, including Kristi Knudson who had never acted before jumping into the role of Isabel! You can read more about the making of the movie in an article from SouthernMinn.com.

I truly loved the film and hope you’ll have an opportunity to see it. For more information about bringing His Neighbor Phil to your area, contact Lori LaBey, founder of Alzheimer’s Speaks at Lori@AlzheimersSpeaks.com.

 

 

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World Alzheimer’s Day: How Can You Make a Difference?

17 Thursday Sep 2015

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, Caregivers, Fundraising, Helpful Resources, Life After Caregiving, Prevention, Quotes, Ruminations, Tips, USAgainstAlzheimer's, Volunteering, Walk to End ALZ, Washington, World ALZ Month

≈ 1 Comment

Tags

alzheimers, Alzheimers advocacy, alzheimers awareness, alzheimers caregivers, alzheimers prevention, alzheimers volunteerism, dementia, world alzheimers day

According to the World Alzheimer Report 2015: The Global Impact of Dementia, published by Alzheimer’s Disease International (ADI), there are 46 million people living with dementia globally. Without a medical breakthrough, that number will rise to 131.5 million by 2050. Worldwide, in 2015 alone, there will be 9.9 million new cases of dementia; that’s a new case every THREE seconds.

World Alzheimer’s Day is September 21, 2015, and it’s a great time to pause and think about what you can do to make a difference. You don’t have to be a brilliant scientist or a millionaire to make a significant impact.

Here are a few ideas to consider. If you have others, please share them by posting a comment below!

Take Care of a Caregiver

  • Deliver lunch, dinner, or a plate of homemade cookies. Send a restaurant gift card, or put together a group of folks willing to take turns cooking a couple of meals each week.
  • Mow the lawn, rake leaves, or offer to help with another household task.
  • Put together a spa basket! Think bath salts, lotion, candles, lavender essential oil, comfy slippers, et cetera.
  • Offer to hold down the fort for a couple of hours to give a caregiver a much-needed break. Perhaps they’d like to go shopping, see a movie, read a book, or just relax!
  • Simply send a card to say you care and offer your support.

Volunteer Your Time and Talent

  • Spend time visiting with memory care residents.
  • Volunteer at an Alzheimer’s Association event, join a committee, help with a special project, or offer to make phone calls.
  • Form a volunteer group to make fidget quilts or comfy blankets for people living with Alzheimer’s.
  • Volunteer to provide respite care during a caregiver support group meeting.
  • Become a support group leader.

Donate or Fundraise

  • Make a monetary donation to your favorite Alzheimer’s organization.
  • Sign up for Walk to End Alzheimer’s or The Longest Day and set a fundraising goal.
  • Donate puzzles, picture books, dolls, art supplies, or CDs to a nearby memory care unit or adult day care.
  • Sign up for AmazonSmile and designate your favorite Alzheimer’s organization as your charity.

Be an Advocate

  • Write or call your representatives in Washington and ask for their support on Alzheimer’s issues.
  • Commit to sharing an Alzheimer’s-related fact or statistic with three friends.
  • Use social media to help raise awareness.
  • Join the Alzheimer’s Prevention Registry!
  • Sign a petition.
  • Share your story!
  • Check out the Action Center at UsAgainstAlzheimer’s for more ideas!

Focus on Prevention

  • Commit to walking for 30 minutes at least 3x per week.
  • Each day, replace one unhealthy item in your diet with a healthier choice.
  • Make a monthly date to get together with friends!
  • Take the stairs instead of the elevator.

As Margaret Mead said, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

I’ve been told plenty of times that I’m wasting my energy. After all, I’m just one person can’t change the world My response to that is simple. I may not be able to change the world, but I can certainly make a positive difference – and you can too!

Here’s to World Alzheimer’s Day. May it be more than just another Monday – let’s all do a little something to further the #ENDALZ movement!

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Marilyn, BA (before Alzheimer's)

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