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The Long and Winding Road…

~ An Alzheimer's Journey and Beyond

The Long and Winding Road…

Category Archives: Support system

Magnify Your Voice: Join the A List 1000 Today!

20 Saturday Aug 2016

Posted by Ann Napoletan in Advocacy and Awareness, Call to Action, Caregivers, Galaxy A List, Helpful Resources, Life After Caregiving, Mom, Quotes, Research, Support system, USAgainstAlzheimer's

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a list 1000, alzheimers, Alzheimers advocacy, caregiving, dementia, galaxy brain trust, usagainstalzheimers

“Together we can magnify our voice. Validate our journey. Help others too.”   ~Meryl Comer, Caregiver, Advocate, and President, Geoffrey Beene Foundation Alzheimer’s Initiative

So often, we, as caregivers, feel isolated, alone, and misunderstood. We talk, but is anyone really listening? Does anyone even care what we have to say?

The last thing we want to believe is that our journey has been in vain. Whether you are living with dementia or are a care partner to someone with dementia, you know you have an abundance of experience and insight that can help others on this path. You know there is purpose in your story.

What if there was a free, easy way for caregivers and individuals who are living with dementia to share personal experiences and valuable information and insights with researchers? What if we could do something to strengthen the collective voice of people just like us? Well, for the first time ever, that opportunity exists!

Every AD support group should join the A List 1000. Think of the power when together we make our patient/caregiver preferences known. ~Meryl Comer

The A List 1000 is a free, anonymous, online community of self-identified, diverse participants who meet any of the following criteria.

  • Have been diagnosed with MCI, Alzheimer’s, or another form of dementia
  • Believe you are at risk for Alzheimer’s or another form of dementia
  • Is or have been a caregiver to someone living with Alzheimer’s or another dementia

A List members will use their collective voice to accelerate research and bring a new level of understanding and value to self-reported patient and caregiver information. Simply put, we want researchers, lawmakers, advocacy groups, the medical community, and other important agents of change to HEAR US and put our valuable input to work!!

We will:

  • Help federal and state governments understand how they can provide financial support to families through grants and other means.
  • Help researchers understand how doctors, patients, and families can work together to improve the treatment approach and experience.
  • Help lawmakers better understand what patients and caregivers need right now and what is most important to them.
  • Help advocacy groups to better serve those they support.
  • Help test technological devices aimed at making life easier for caregivers and people living with dementia.
  • Help further research by participating in clinical trials.

Members of the A List will be offered various opportunities based upon their specific situation. However, it is completely up to each individual to decide which to participate in, and your information is always anonymous! It may be something as quick and easy as an online survey, but it will be highly impactful!

As someone whose life has been changed by Alzheimer’s disease, I’m extremely excited about this first of its kind initiative! This is a unique chance for caregivers and people living with dementia to be heard and to have our opinions and experiences considered and validated. It isn’t often that we get an opportunity to put our hard earned knowledge to work for the greater good – but the A List is making that possible!

I joined the A List to honor my beautiful mother, Marilyn, who left me almost four years ago. I hope you’ll honor someone important to you by registering today! Click here to join the A List 1000 today and give VOICE to your story! 

 

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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 6th 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-63Give 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:

  • United States House of Representatives
  • United States Senate

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-whiteMarilyn’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!

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36-Hour Live Chat: Christmas Eve & Christmas Day

18 Friday Dec 2015

Posted by Ann Napoletan in Caregivers, Events, Helpful Resources, Holidays, Support system

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alzheimers holiday support, caregiver holiday support, caregiver resources, caregiving, caregiving.com

Purple AngelWe all know the holidays can be exceedingly difficult and often lonely for families dealing with dementia. When I saw this 36-hour live chat announcement on Facebook, it caught my eye because I think it’s something so many caregivers might benefit from.

There’s an indescribable sense of comfort that comes from simply knowing you aren’t alone. Thank you to Caregiving.com for putting this together!

“From 5 p.m. ET on Christmas Eve until 5 a.m. ET on December 26, we’ll keep our chat room open. To join the chat on Christmas Eve or Christmas Day, simply click the orange “chat” button and then head into our Caregiving Chatroom. Typically, you need to be a CareGiving.com member to join our chat. For 36 hours, any visitor can join the chat without having to register a CareGiving.com account.”

To see the full announcement and all pertinent information, click here!

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The Long and Winding Road

Marilyn, BA (before Alzheimer's)

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