• Home
  • Helpful Resources
  • Reading List
  • Recommended Blogs
  • Marilyn’s Legacy: A World Without Alzheimer’s
  • About Me
  • Contact Me

The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Tag Archives: alzheimers advocate

Guest Post: Bonds, License Plates, & Semipostals

25 Thursday Feb 2016

Posted by Ann Napoletan in Advocacy and Awareness, Face of Alzheimer's, Guests, Help Stamp Out Alzheimer's, Inspiration, Life After Caregiving, USAgainstAlzheimer's, Washington

≈ 1 Comment

Tags

alzheimers, alzheimers advocate, alzheimers funding, alzheimers semipostal, dementia, help stamp out alzheimers

Image courtesy of Lynda Everman

I’ve often said that when your life is touched by Alzheimer’s or another form of dementia, you are automatically admitted to “the club.” It’s a club you never knew existed and a membership no one would ever seek out on their own. However, it doesn’t take long to realize your membership card came with guaranteed friendships with some of the most compassionate, inspiring people you’ve ever met.

For me, one of those people has been Lynda Everman, Founding Member of ActivistsAgainstAlzheimer’s, ClergyAgainstAlzheimer’s, WomenAgainstAlzheimer’s, and the Faith United Against Alzheimer’s Coalition. Lynda is like the energizer bunny; she never stops, and her determination to drive toward a world without Alzheimer’s is limitless.

Lynda also founded Help Stamp Out Alzheimer’s. She and Kathy Siggins have worked (and continue to work) tirelessly to urge lawmakers to pass the Alzheimer’s Disease Semipostal Stamp Act (H.R. 3092) that will require the issuance and sale of an Alzheimer’s semipostal (fundraising) stamp. Look for an upcoming post that will include more information on this project, including ways you can help.

I’d like to thank Lynda for allowing me to post this poignant essay. About the piece, Lynda says, “I’m moved to share with you this essay that I wrote some time ago as, more than anything, it sums up my philosophy on what we must do to end Alzheimer’s. . .and hopefully explains some of my tenacity for the semipostal.”

 

Bonds, License Plates, & Semipostals

Image courtesy of Lynda Everman

My husband was in the U.S. Marine Corps for only 4 years, but they were transformative years. The eldest son of a Conscientious Objector, he was 17 when he enlisted and was discharged 4 days short of his 21st birthday. He was a generous man, a man of principal, an innovator, a contributor, and very protective of all that he loved, especially his wife. One of his expressions was, “Nothing bad will ever happen to you on my watch.” Unfortunately, some things are beyond the control of even the best of men. For 15 years Alzheimer’s attacked the very fiber of our lives and claimed it’s prize at his death in March of 2012.

Richard was a Principal Systems Analyst for the University of California. A high school drop out and a voracious reader, he designed & set in place student information systems that were adopted nationwide and are still intact & vigorous today. In a bold and unconventional move in the 80s, he took the University of California, Irvine off the mainframe that was shared with the 5 southern campuses at UCLA and introduced personal computers to our campus. When his colleagues on the other campuses saw that it worked (and that he didn’t get fired!), they quickly followed.

Another of his favorite expressions was, “How you perceive a problem is how you solve it. Perception is reality.” It is this expression that brings me to this discussion of bonds, license plates, and semipostals.

I’ve asked my Senators and Congresswoman to support a minimum increase of $400 million in funding for Alzheimer’s research and patient & caregiver programs in FY 2017, as well as all aspects of the Alzheimer’s Action Now initiative. We’ve all read it: the federal government spends roughly $270 on Alzheimer’s care for every dollar it spends on Alzheimer’s research. So, unless and until we give our researchers the funds they need to achieve success at the bench and in our clinics, we will continue a downward spiral of needless suffering and loss.

Let me urge all who are reading this to move away from the philosophy of paucity and embrace the belief that we must use EVERY means available to defeat this formidable opponent. Of course we will continue with our individual and collective efforts; we will continue to walk, row, bike, hike, climb mountains, knit caps, bake brownies, have garage sells. . .and all manner of activities to raise awareness and funds. But Alzheimer’s is relentless and we, as advocates, must be as well. So we must identify and use any and all viable funding sources going forward: at the municipal level, at the state level, and at the federal level.

There are many in our community who believe that if we ask for one thing, we lessen our chances of asking for and receiving something else. I have to disagree. Of course, there is the risk that our requests will fall upon deaf ears; but there is also the hope that our message will get through. This is a huge and serious problem that requires our best efforts to protect the very essence of what makes us human: our memories. Anyone who has loved another, whether it be a spouse or partner, a child, a sibling, a parent, or a friend knows that we would stop at nothing to protect that individual. I know I would do that for those I love and that Richard would have done that for me. As advocates we must do no less. Let’s pull out ALL the stops and implement legislation and programs for bonds, license plates, semipostals and any and all initiatives that will decisively and quickly advance our goals and leave a legacy of a world WITHOUT Alzheimer’s!

Rest in peace, my beloved husband, and know that I will not rest until a cure is found! ‪#‎ENDAlz ‪#‎SemperFi

~ Lynda Everman

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to email a link to a friend (Opens in new window)

Like this:

Like Loading...

Honoring Ken: An Alzheimer’s Short Film

06 Sunday Sep 2015

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

≈ Leave a comment

Tags

alzheimers, alzheimers advocate, alzheimers caregivers, brenda bouchard, dementia, honoring ken

Ken Bouchard, photo courtesy of Brenda Bouchard

I met Brenda Bouchard online, like so many other advocates across the country – and the world – that I’ve had the pleasure and honor of crossing paths with. This lady is something special. Her fearless determination, poise, and grace are so inspiring.

She has directly addressed the topic of Alzheimer’s with Hillary Clinton, Marco Rubio, John Kasich, Bernie Sanders, Jeb Bush, Scott Walker, Rick Santorum, Rand Paul, and Donald Trump at town hall meetings in her home state of New Hampshire. And now, she has released this incredible short film.

The film is 20 minutes long, but I ask you to please take the time to watch it. Learn about her husband Ken and his incredible life, how Alzheimer’s has affected their marriage – and their entire world, and how Brenda has stepped out of her comfort zone to become a courageous advocate.

Please watch and then share with others to help further Brenda’s mission.

You can also find Brenda on Facebook on her Honoring Ken page and on Twitter at @HonoringKen.

To see the various town hall meetings where Brenda has addressed 2016 presidential candidates, click here. 

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to email a link to a friend (Opens in new window)

Like this:

Like Loading...

Two Alzheimer’s Caregivers: Straight from the Heart

25 Saturday Jul 2015

Posted by Ann Napoletan in Advocacy and Awareness, Blogging, Caregivers, Events, Face of Alzheimer's, Family, Inspiration, Music and Art, Ruminations, Smiles, Support system

≈ 2 Comments

Tags

alzheimers, alzheimers advocate, alzheimers caregivers, alzheimers music, alzheimers music festival, dementia

stained-glass-love-hands

Image Source: morguefile

I’ve seen a couple of posts this week that have really touched my heart. Allan Vann and Vince Zangaro are on very similar, yet different paths. One of the things they have in common is their willingness to share their stories to raise awareness and bring hope and comfort to other caregivers.

Allan Vann

Allan Vann is a talented blogger who has published hundreds of insightful, informative articles on his blog. He also recently began writing a column for the Huffington Post and was interviewed by CBS news last week.

Allan’s wife, Clare, was formally diagnosed with younger onset Alzheimer’s at age 63, but had been experiencing signs for several years before that. Allan cared his wife at home before making the difficult decision to place her in a care facility. However, he learned that doing so allowed him to be her husband again, rather than her 24×7 caregiver, which was a true gift to both of them.

allan

Image Source: CBS News

The CBS interview captures the pain of slowly losing a loved one to Alzheimer’s with a raw, emotional accuracy.

Although it was my mother rather than spouse that I lost to this horrid disease, so much of what Allan says rings true to me. The arguments were the most difficult – early on, we fought about everything, and that was so uncharacteristic of our relationship. So sad to think about it…

Read more and watch the Allan’s interview here.

Vince Zangaro

Vince Zangaro was just 29 when his father was diagnosed with Alzheimer’s ten years ago at age 62. He & his wife, Amy, are full-time caregivers and by sharing their journey, they help others to stay afloat.

Vince had a wonderful piece published on The Caregiver’s Voice this past week. One of the things that makes it unique is that Vince wrote it from his father’s perspective.

When I open my eyes in the morning, I feel scared. Where am I? Where have I been? Do I know this place? I look to the right, and the people there are sleeping soundly. I can’t remember who they are, but I know they love me and I love them; I feel safe.

Image Source: Facebook

Read the full piece here.

In some ways, Vince’s posts and his videos make me miss my mom even more, but mostly they remind me of all the happy times we shared even as she fell further into the clutches of Alzheimer’s. His words also illustrate how having a loved one with Alzheimer’s changes our lives, and how that often results in us becoming better human beings.

One of his recent Facebook posts provided a simple, yet invaluable tip, in such a heartwarming way.

“I have learned when giving dad a hug to have it last a minute or longer. After the 60 second mark you will start to see him grasp the moment. It doesn’t always take medicine to help someone you love.”

And then there’s this video that makes me smile and cry at the same time…  if it was possible to make a 3-minute video that defines love in its truest form, this is it.


Vince is also founder of the Alzheimer’s Music Fest which you can read more about on Facebook or at the event website. If you’re in the Duluth, GA, area, check it out!

Share this:

  • Click to share on Twitter (Opens in new window)
  • Click to share on Facebook (Opens in new window)
  • Click to share on Pinterest (Opens in new window)
  • Click to share on Reddit (Opens in new window)
  • Click to share on LinkedIn (Opens in new window)
  • Click to share on Tumblr (Opens in new window)
  • Click to email a link to a friend (Opens in new window)

Like this:

Like Loading...
© Copyright 2020
All Rights Reserved
The Long and Winding Road

Between 2009 and 2015, Marilyn’s Mighty Memory Makers have raised over $22,000 in the fight to #ENDALZ! To all who have supported us, THANK YOU!!

Marilyn, BA (before Alzheimer's)

Contributor

Contributor

Recent Posts

  • June 7, 2021: A Historic Day
  • UsAgainstAlzheimer’s National Alzheimer’s Summit: Don’t Miss It!
  • Happy 84th Birthday, Mom.
  • Mother’s Day in Heaven
  • World Alzheimer’s Month

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 1,324 other followers

Archives

Blog Directory & Business Pages at OnToplist.com

Blog Stats

  • 129,267 hits

Meta

  • Register
  • Log in
  • Entries feed
  • Comments feed
  • WordPress.com
stats for wordpress

Categories

Popular Posts

  • About Me
  • Thank you!
  • A Special Bond
  • Telling the Story
  • Monday ... on Caregivers
  • Caregiving: Imperfections, Weaknesses, Acceptance, and Forgiveness
  • Walking a mile in his shoes...
  • Look for me on VoiceQuilt!
  • CGSN: Focus on YOU!
  • Hiding In the Canned Goods Aisle...and Other Stuff

Recent Comments

  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Ann Napoletan on Caregiver PTSD: Fact or Fiction?
  • Tasha on Caregiver PTSD: Fact or Fiction?

Pages

  • 2013-2014 News Archive
  • Helpful Resources
  • Latest News & Events
  • Postmaster General Letter – Alzheimer’s Semipostal
  • Reading List
  • Recommended Blogs
  • About Me
  • Contact Me
Coming Soon!
Marilyn's Legacy: A World Without Alzheimer's, Inc.
Stay tuned!!

Blog at WordPress.com.

  • Follow Following
    • The Long and Winding Road...
    • Join 1,324 other followers
    • Already have a WordPress.com account? Log in now.
    • The Long and Winding Road...
    • Customize
    • Follow Following
    • Sign up
    • Log in
    • Report this content
    • View site in Reader
    • Manage subscriptions
    • Collapse this bar
 

Loading Comments...
 

    %d bloggers like this: