June is Alzheimer’s & Brain Awareness Month

01 Wednesday Jun 2016

Posted by Ann Napoletan in Advocacy and Awareness, ALZ Assn - National, alzheimer's & brain awareness month, Caregivers, Cure Alzheimer's Fund, Fundraising, Help Stamp Out Alzheimer's, Helpful Resources, Life After Caregiving, Support system, USAgainstAlzheimer's, Volunteering, Washington

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#endalz, alzheimer's & brain awareness month, alzheimers, Alzheimers advocacy, alzheimers awareness, dementia

June is upon us, and with the month of the summer solstice comes Alzheimer’s & Brain Awareness Month! It’s the perfect time to get involved in the fight to end this horrific disease, and here are a few ways to do just that.

Know the Facts

Learn about Alzheimer’s and then help educate others!

Dementia is an umbrella term for a variety of symptoms that may accompany or indicate certain diseases or conditions. Alzheimer’s is a type of dementia. Other types include Lewy body dementia, frontotemporal dementia, vascular dementia, and mixed dementia.

Memory loss is just one aspect of Alzheimer’s. The disease also results in problems with executive function, spacial relationships, communication, and judgment. Other symptoms include anxiety, withdrawal, apathy, depression, agitation, paranoia, hallucinations, and delusions.

Every 66 seconds, an American develops Alzheimer’s disease.

4 million Americans are living with Alzheimer’s. Of those, at least 200,000 are under age 65.

Alzheimer’s takes more lives than breast cancer and prostate cancer combined, yet research is still grossly underfunded.

Alzheimer’s is the 6^th leading cause of death in the U.S. and the only one that cannot be prevented, cured, or even slowed.

In 2015, 15.9 million family and friends provided an estimated 18.1 billion hours of unpaid care for those with Alzheimer’s and other dementias.

Volunteer Your Time

photo-63 Give of your time! Contact your local Alzheimer’s Association chapter to find out how you can get involved. If that isn’t in your wheelhouse, reach out to a nearby memory care community. I promise that what you give will come back to you tenfold (and then some!) every single time. No special talents needed. If you’re capable of sitting and holding someone’s hand, you’re qualified!!

Let Your Voice Be Heard

Add your voice to the growing movement calling for an Alzheimer’s semipostal (fundraising) stamp. Take just a moment to encourage the Postmaster General to move forward with a stamp that could raise millions of dollars for Alzheimer’s disease research. The breast cancer stamp has raised over $83 million since its inception! Click the following link to add your encouragement: https://www.uspsoig.gov/blog/putting-stamp-good-causes

You can also reach out to your elected officials, asking them to support increased funding for Alzheimer’s. Consider writing or calling to share your personal story; there’s no better way to underscore just how important an issue is than to put a human face on it. You have the power to do that. If you aren’t sure how to reach your officials, these sites will help:

Reach Out

Do you know someone caring for a loved one who has Alzheimer’s or another form of dementia? Bring them dinner or offer to provide a couple of hours of respite care so they can have a break to do something they enjoy. Drop off some fresh cut flowers or mow their yard. Small acts of kindness go a long way in letting someone know they aren’t alone.

Likewise, if you have a friend or family member living with dementia, please take time to visit them – no matter what stage they are in. Remember that these are living, breathing human beings who need human contact and love as much as you and I. Even if they can’t communicate, they will feel your energy; even if they don’t recognize you, they will relish the company.

Make a Monetary Contribution

250x126-white Marilyn’s Legacy: A World Without Alzheimer’s is a registered 501(c)(3) non-profit organization dedicated to ending Alzheimer’s and supporting and advocating for family caregivers. Marilyn’s Legacy was borne of a desire to honor my mom’s life and ensure that her battle with this disease was not in vain.

We are partnering with UsAgainstAlzheimer’s and the Cure Alzheimer’s Fund, two non-profits that are recognized leaders in this space. It is very important to us that every dollar raised goes directly to the mission rather than salaries and other operational expenses. The founders of UsAgainstAlzheimer’s and the board of directors of the Cure Alzheimer’s Fund cover every dime of overhead ensuring that 100% of your contribution furthers the fight to END ALZHEIMER’S! When you support Marilyn’s Legacy, you can feel confident that the funds donated are being spent wisely.

To make a tax-deductible contribution, visit our donation page.

Join the Brain Health Registry

The Brain Health Registry is an easy way to contribute to research from the comfort of your home. Participants sign up on a website and complete several questionnaires regarding medical history, lifestyle, and current health.

Once the questionnaires are finished, participants are invited to complete a series of tests that might be likened to brain games. Each activity takes just a few minutes. At 3-6 month intervals, registry members receive email reminders to come back and complete additional activities. The hope is that people will continue to be involved for many years, as the longevity of participation helps researchers understand how our brains change over time.

The researchers behind the Brain Health Registry aspire to use the program to build out a pool, or registry, of potential clinical trial enrollees. The hope is that by collecting data on participants in this fashion, the right people can be assigned to studies faster, ultimately accelerating trials.

To join the Brain Health Registry, visit: http://www.brainhealthregistry.org/

Share This Post

Last but not least, share this post. Shout your message from the rooftops! Encourage your personal network to help #endalz! Remember that our collective voice is bold, powerful, and impossible to ignore. Together we can move our agenda forward and realize a world without Alzheimer’s!

Update: Will Ferrell – Comedic Depiction of Reagan with Alzheimer’s in Poor Taste

29 Friday Apr 2016

Posted by Ann Napoletan in Advocacy and Awareness, Ruminations

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alzheimers, dementia, ronald reagan, will ferrell, will ferrell movie

-Reality

Update: One day after this news broke, amid outrage from the Reagan family and the Alzheimer’s community as a whole, Will Ferrell has pulled out of the film.

While I’m very thankful for this, the entire situation is indicative of a much larger issue. The events of the past two days illustrate there is a widespread misconception about exactly what Alzheimer’s is and what the disease does to everyone it touches. The fact that a comedic storyline of this nature was conceived of and a production company took on the project remains a travesty.

It’s a powerful reminder that we, as advocates, must remain tenacious as we go forward to educate the public about all forms of dementia. Perhaps Mr. Ferrell will now join us on that mission.

I am encouraged by the fact that over the past 24 hours, the outcry of thousands was heard loud and clear. It is my hope that at the end of the day, the media attention this yielded will help further our goal of bringing Alzheimer’s out of the shadows.

Patti Davis wrote an eloquent update to her earlier open letter, which you can find on her website, and my friend and fellow advocate, Mike Belleville, has started a petition calling for the script to be destroyed. As a 55-year-old living with younger onset Alzheimer’s disease, Mike has rather strong feelings on the matter. Please sign the petition and share widely on social media, asking others to do the same.

Fondly,
Ann

I haven’t been writing much due to lack of time and inspiration. However, upon reading about Will Ferrell’s upcoming film, Reagan, I find myself spurred by the asinine notion that Alzheimer’s disease provides an acceptable comedic storyline.

For those who haven’t heard, Ferrell will portray Ronald Reagan “in the throes of Alzheimer’s”[1] for a comedy feature he is also producing.

Clearly Mr. Ferrell has not watched helplessly as his mother literally lost her mind before his eyes over a long, slow, painful decade. He has not swapped roles with a strong, beautiful, independent woman in her mid-60’s, becoming her parent as she became a child again. He doesn’t know what it’s like to see the person who was always his rock suddenly need help with even the most intimate, personal activities of daily living.

I doubt Will Ferrell has had to take his mother’s car keys when it was no longer safe for her to drive or tell her she would have to leave her home because that, too, had become unsafe. He hasn’t received a phone call on a snowy, sub-zero winter night, and heard the voice on the other end of the phone tell him his mother has eloped and was found wandering up the middle of a busy street in the dark.

The actor hasn’t desperately tried to calm his mother when she screamed for hours on end, unable to explain what was wrong because she could no longer communicate verbally. Will Farrell has never stood by as his mother accused him of stealing from her because the paranoia that comes with Alzheimer’s had turned him into an enemy. Nor do I imagine he has watched as she was terrorized by the hallucinations that also accompany dementia.

Mr. Ferrell hasn’t fed his mother when she could no longer feed herself. He hasn’t seen the emptiness in her eyes as she blankly stares off into space, oblivious to her surroundings. He doesn’t have particularly poignant milestones indelibly etched in his mind – like the moment he realized his mother no longer remembered how to put on a pair of pants. And, he probably doesn’t know what it’s like when friends and family stop visiting because they “can’t handle seeing her like that.”

He hasn’t listened to his mother beg over and over again to “go home” or watched tears stream down her face when she’s having a moment of clarity and knows darn well something is terribly wrong. He hasn’t heard his otherwise non-verbal mother suddenly cry out, “HELP ME” or “I WANT TO DIE.”

God willing, Will Ferrell will never have to give his mother morphine to keep her calm and comfortable until the hospice nurse arrives in the middle of the night. And he won’t be forced to watch as Alzheimer’s ultimately kills her.

The experiences [2] I’ve mentioned in this piece provide a tiny glimpse into what it’s like to lose someone to this horrific disease. Believe me, what you’ve read is the sanitized version of reality. I saw a headline earlier this evening that asked, “Can Will Ferrell Make Alzheimer’s Funny?” I’ll let you be the judge.

Patti Davis, daughter of Ronald Reagan, has released an open letter to Will Ferrell. I hope you’ll take a moment to visit her website to read it. If you are as outraged as many of us, please share Ms. Davis’ letter widely.

[1] Patti Davis, An Open Letter to Will Ferrell, 04.28.16. http://booksbypattidavis.com/an-open-letter-to-will-ferrell/

[2] This is but a small sample of actual experiences I (and millions of other family caregivers ) have lived.

Join the Brain Health Registry NOW and Meet Linda Gray!

09 Saturday Apr 2016

Posted by Ann Napoletan in Advocacy and Awareness, Brain Health Registry, Research, USAgainstAlzheimer's

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alzheimers, alzheimers brain health registry, alzheimers clinical trials, alzheimers research, dementia

“Do at least one thing.”

~Dan Gasby, husband and care partner to Barbara “B” Smith.

*NOTE: The Linda Gray contest has ended, but we encourage you to join the Registry using the following link: https://my.brainhealthregistry.org/register

What is the Brain Health Registry?

Did you know that as many as 9 out of 10 people who sign up for a clinical trial don’t make it through the screening process? One of the greatest obstacles our researchers face is finding enough qualified subjects, and the cost of this – in both time and money – is astounding. This alone significantly impedes the process of research projects and, in fact, is the reason for failure in many cases.

The researchers behind the Brain Health Registry aspire to use the program to build out a pool, or registry, of potential clinical trial enrollees. The hope is that by collecting data on participants through online games and activities, the right people can be assigned to studies faster, ultimately accelerating trials.

Dr. Michael Weiner¹ directs the registry and is a professor of radiology and biomedical engineering, medicine, psychiatry and neurology at the University of California San Francisco. He describes the registry as “… a funnel where a lot of people come in and it leads to many smaller funnels, depending on the individual.” He believes this process should considerably reduce the number of “screen fails.”

The registry currently has 36,000 members, and the goal is to reach at least 40,000 by third quarter of this year.

How Does It Work?

Participants sign up on a website and complete several questionnaires regarding medical history, lifestyle, and current health. Users can complete the questions as they have time; if they don’t finishing in one sitting, they can come back and pick up right where they left off. The developers of this tool clearly designed it with usability and convenience in mind.

Once the questionnaires are finished, the next step is to complete some tests that might be likened to brain games. Each activity takes just a few minutes and can also be done at the participant’s convenience, not necessarily all in one session.

At 3-6 month intervals, registry members receive email reminders to come back and complete additional activities. The hope is that people will continue to be involved for many years, as the longevity of participation helps researchers understand how our brains change over time.

As data is collected and analyzed, some people will have an opportunity to increase their level of participation. This might include genetic screening, providing blood samples, sharing medical records, or even participating in a clinical trial. Keep in mind all of these additional activities are completely voluntary.

It should be noted that the BHR is committed to maintaining the privacy of members. The full privacy policy can be found on the website.

Why Should I Join?

While building a pool of potential study participants through the questionnaires and online tests, the BHR is also pre-screening those individuals. Just having this pre-screened pool could literally reduce shave years off of lengthy studies. Data collected can be used to match people with the clinical trial that suits their specific set of circumstances.

Researchers who are able to enroll study participants from the BHR pool will have access to valuable historical data – potentially collected over years – based on the periodic online activities. This is referred to as a longitudinal study; a research study that involves repeated observations of the same variables over extensive periods of time. For Alzheimer’s in particular, because brain changes are believed to begin a decade or more before symptoms present, this historical data could be game changing!

The registry provides all of us an opportunity to make a real impact in the fight to stop Alzheimer’s. It’s free to join, and an easy way to do your part! Your participation matters!!

Joining Together to Find a Cure

Respected leaders in Alzheimer’s research and advocacy from around the nation are partnering with UCSF to make this project a success. A few of those partners are the Cleveland Clinic’s Lou Ruvo Center for Brain Health, the Alzheimer’s Prevention Registry, Luminosity, the Alzheimer’s Drug Discovery Foundation, the Alzheimer’s Association TrialMatch Program, Brigham & Women’s Hospital, Massachusetts General Hospital, and the Global Alzheimer’s Platform Foundation! Now that’s a pretty impressive list!

Additionally, as part of her own Alzheimer’s advocacy efforts, actress Linda Gray is lending her support to the Brain Health Registry! Linda is well known for her role as Sue Ellen Ewing on the iconic television drama, Dallas. You might say Sue Ellen was the original desperate housewife!

Anyone who joins BHR between now and May 15,2016, will be entered in a drawing to win lunch with Linda! The winner will be selected at random, and the prize includes lunch, flights, and accommodations for two! Click HERE to JOIN NOW! It’s free, and you might just be the lucky winner!

Feel free to link to this article, but please do not reprint the article without the express consent of The Long and Winding Road.