Rally in Tally: How Everyone Can Help

Rally in Tally is Jan. 16 and 17! Florida has the second-highest incident rate of Alzheimer’s disease in the country. Your voice is critical to raising Alzheimer’s awareness and urgency.

WHAT YOU CAN DO

Join us in Tallahassee. Be our special guest as all four Alzheimer’s Association Chapters of Florida host “Rally in Tally” – a unique state advocacy experience where you will meet with state legislators, tell your story and explain why it is important for them to make Alzheimer’s issues a top priority! You can come for both events or just one.

Lighting the Florida Capitol in Purple for Alzheimer’s

January 16 – Tuesday Night at Sundown we will hold a “Purple Lighting Ceremony” on the steps of the historic, Old State Capitol with state legislators (approximately 30 minutes)

January 17 – State Advocacy Day on Wednesday when legislative meetings will take place in the new Capitol Building

If you do not live in Tallahassee, please see the contact information below and we’ll see if there are any services shuttling to the Capitol. Some areas have shuttles to the Capitol (on a first come, first serve basis) and some people are driving on their own.

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For more information please contact:

Cyrena Duncan or 727-259-2318 if you live in the Gulf Coast

Evan Holler or 904-472-6641 if you live in Central or North Florida

Jennifer Braisted or 561-967-0047 if you live in Southeast Florida

Can’t attend? That’s okay. There are other ways you can help. 

Show your support on social by sharing your Alz story or sharing posts from advocates at the event on January 16 & 17.

Follow Central and North Florida on FacebookTwitter, and Instagram.

Follow Southeast Florida on FacebookTwitter, and Instagram.

Follow Florida Gulf Coast on FacebookTwitter, and Instagram.

Call, tweet or email your state legislator and let them know we must make Alzheimer’s a priority in Florida.

Find your state senator here.

Find your state representative here.

FLORIDA IS UNITED. TOGETHER, WE WILL #ENDALZ.

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My “Rally In Tally” Experience: The Cyrena Duncan Story

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Cyrena Duncan, Public Policy Manager,
Alzheimer’s Association, Florida GulfCoast Chapter

Each year Rally in Tally reinforces the overwhelming passion and enthusiasm of Alzheimer’s advocates in the State of Florida. It is an opportunity to relentlessly convey the ultimate goal of making Alzheimer’s disease a top priority.  While I remain dedicated to the Alzheimer’s Association’s mission through my public policy efforts, being afforded the opportunity to travel to Tallahassee each year with a group of impassioned caregivers, persons with dementia and advocates truly creates a sense of solidarity and community. And reflects the commonality amid the diversity that exists among individuals affected by this disease.

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Rally in Tally allows those directly affected by Alzheimer’s disease to genuinely
connect with others based on their personal journey and collectively voice their experiences living with or caring for someone with the disease to ensure our state legislators fully appreciate the disease process. Last year, during each State meeting, what remained most significant was the courage each and every caregiver, family member and person with the disease presented. They never hesitated to enthusiastically use their personal experiences to create a vivid picture of the disease to help ensure future generations live in a world without Alzheimer’s.

Rally in Tally 2018

On January 16 and 17, 2018 all four Alzheimer’s Association Chapters of Florida host “Rally in Tally” – the primary advocacy event that offers opportunities to meet with State legislators.

We will light the Capitol Building purple the night before at dusk to shine a beacon of hope for all those impacted by Alzheimer’s disease and kick off Rally in Tally.

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Join Us!

If you live in Tallahassee, you can join us the morning of January 17th beginning at 9:00 a.m. at the Old Capitol Building in the old Senate Chambers. Below, and attached are some details. We will be validating parking in Kleman Plaza.

If you do not live in Tallahassee, please see the contact information below and we’ll see if there are any services shuttling to the Capitol. Some areas have shuttles to the Capitol (on a first come, first serve basis) and some people are driving on their own.

For more information please contact:

Cyrena Duncan or (800) 272-3900 if you live in the Gulf Coast

Evan Holler or (800) 272-3900 if you live in Central or North Florida

Jennifer Braisted or (800) 272-3900 if you live in Southeast Florida

Mom is different this holiday, now what?

The holidays are a time for family gatherings, traditions and sharing memories of a time gone by.  But what happens when the one who has always held it all together seems off for some reason?  The recipes she used to make are not quite the same, the name of her grandchildren seem hard to remember and she can’t remember she just saw you last week at Thanksgiving.

If you or a family member has seen some changes in a loved one that has caused concern, here are some valuable resources to help you navigate what could be a very sticky situation.

First, really understand if what you think you saw is really a sign of Alzheimer’s or related dementia.  The Alzheimer’s Association’s Know the 10 Signs will help you determine if there is a reason for concern.

WHAT IS THE DIFFERENCE BETWEEN ALZHEIMER’S AND TYPICAL AGE-RELATED CHANGES?

Signs of Alzheimer’s/dementia Typical age-related changes
Poor judgment and decision-making Making a bad decision once in a while
Inability to manage a budget Missing a monthly payment
Losing track of the date or the season Forgetting which day it is and remembering it later
Difficulty having a conversation Sometimes forgetting which word to use
Misplacing things and being unable to retrace steps to find them Losing things from time to time

 

Click here to find out more about the 10 Signs:  www.Alz.org/10signs

Now that you understand the differences between normal aging and the possibility of Alzheimer’s and you suspect it may be Alzheimer’s or a related dementia, it is important to be tactful in your approach.

  • Come from a place of caring: Ask them questions like: Have you noticed changes in yourself? Have you been stressed over day to day tasks or forgetful lately?  Missed Monthly payments or doctor’s appointments?  Coming out and directly saying you think they have Alzheimer’s or dementia is not advised.
  • Be proactive: Chances are that the answer to your questions may raise concern for them as well.  Stress the importance of getting diagnosed early so they can still be part of planning for their future as far legalities and how they want to be taken care of.
  • Offer to work together: Let them know they are not alone in this, that you are here for them and you will help them every step of the way. Offer to take them to the appointment and ask if they’d like you to be in the office with them when they see the doctor.
  • The Alzheimer’s Association can help: Our 24/7 Helpline is available to answer questions in over 200 languages at 272.3900.  Care and support services are available, making it easier for you and your family to live the best life possible should your suspicions be correct.

Once you have helped them make a doctor’s appointment, it may be helpful to complete the Doctor’s Checklist.  It is a quick checklist you can take with you to the doctor’s appointment and goes through some basic information about what has been happening and questions to ask the doctor.

One last note, be prepared that the conversation may not go the way you want it to.  It may be necessary for you to step back a little and let them come to the realization that they need help.  It may be necessary to speak to other family members so they can take note of changes and be there for them as well.

In any event, the Alzheimer’s Association can provide resources, advice and information to help you continue to be a support for those who need it.

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Be prepared for the changes Alzheimer’s brings. Sign up for our e-newsletter and receive tips to help you cope with these changes. http://www.alz.org/seflorida

Did Bill Gates say $50 Million?

Bill Gates has recently donated to the Dementia Discovery Fund with the intent of expanding research on the brain and Alzheimer’s disease to lead to a cure.

Presently, the disease affects 5 million Americans, for which the government invests $259 billion to cover health care for those affected per year.

A growing health crisis: The projected number of people with dementia from 2015 to 2050, millions

“I first became interested in Alzheimer’s because of its costs—both emotional and economic—to families and healthcare systems. The financial burden of the disease is much easier to quantify. A person with Alzheimer’s or another form of dementia spends five times more every year out-of-pocket on healthcare than a senior without a neurodegenerative condition. Unlike those with many chronic diseases, people with Alzheimer’s incur long-term care costs as well as direct medical expenses. If you get the disease in your 60s or 70s, you might require expensive care for decades.”

Moreover, following Gates’s donation, the NFLPA also made a bountiful contribution. Their goal is a further study on the brain since their sport has an infamous correlation with brain trauma and concussions. They want to address the health of their players by using a “whole player, whole life” approach; this means that they want to not only study the trauma and diseases they may encounter now, but some they may encounter in the future, a paragon being Alzheimer’s.

These costs represent one of the fastest growing burdens on healthcare systems in developed countries. According to the Alzheimer’s Association, Americans will spend $259 billion caring for those with Alzheimer’s and other dementias in 2017. Absent a major breakthrough, expenditures will continue to squeeze healthcare budgets in the years and decades to come. This is something that governments all over the world need to be thinking about, including in low- and middle-income countries where life expectancies are catching up to the global average and the number of people with dementia is on the rise.

What are Bill Gates steps?

  • We need to better understand how Alzheimer’s unfolds. The brain is a complicated organ. Because it’s so difficult to study while patients are alive, we know very little about how it ages normally and how Alzheimer’s disrupts that process. Our understanding of what happens in the brain is based largely on autopsies, which show only the late stages of the disease and don’t explain many of its lingering mysteries. For example, we don’t fully understand why you are more likely to get Alzheimer’s if you’re African American or Latino than if you’re white. If we’re going to make progress, we need a better grasp on its underlying causes and biology.
  • We need to detect and diagnose Alzheimer’s earlier. Since the only way to diagnose Alzheimer’s definitively is through an autopsy after death, it’s difficult to identify the disease definitively early in its progression. Cognitive tests exist but often have a high variance. If you didn’t sleep well the night before, that might skew your results. A more reliable, affordable, and accessible diagnostic—such as a blood test—would make it easier to see how Alzheimer’s progresses and track how effective new drugs are.
  • We need more approaches to stopping the disease. There are many ways an Alzheimer’s drug might help prevent or slow down the disease. Most drug trials to date have targeted amyloid and tau, two proteins that cause plaques and tangles in the brain. I hope those approaches succeed, but we need to back scientists with different, less mainstream ideas in case they don’t. A more diverse drug pipeline increases our odds of discovering a breakthrough.
  • We need to make it easier to get people enrolled in clinical trials. The pace of innovation is partly determined by how quickly we can do clinical trials. Since we don’t yet have a good understanding of the disease or a reliable diagnostic, it’s difficult to find qualified people early enough in the disease’s progression willing to participate. It can sometimes take years to enroll enough patients. If we could develop a process to pre-qualify participants and create efficient registries, we could start new trials more quickly.
  • We need to use data better. Every time a pharmaceutical company or a research lab does a study, they gather lots of information. We should compile this data in a common form, so that we get a better sense of how the disease progresses, how that progression is determined by gender and age, and how genetics determines your likelihood of getting Alzheimer’s. This would make it easier for researchers to look for patterns and identify new pathways for treatment.

Tips for Traveling w/ Alzheimer’s

5 Travel Tips for Alzheimer’s Caregivers

Traveling with your loved one stricken with Alzheimer’s disease doesn’t necessarily have to be a thing of the past after diagnosis. The key to ensuring more quality leisure time with your loved while creating precious memories along the way comes with simple preparation, planning and safety. Employing this following guide will ensure an enjoyable and relaxing trip for everybody.

1: Be Realistic

It is important to think about how far advanced in the disease your loved may be. Are they still able to travel far from home, or is a simple day trip to a closer destination more reasonable? To what degree of physical mobility do they still have? Whatever will bring about the most pleasure possible is the main point to consider by a caregiver.

2: Be Safe

An Alzheimer’s patient who may find themselves in unfamiliar surroundings has a higher risk of wandering and getting lost. It is always a good idea to make sure that your loved one is with yourself or someone whom they’re familiar with at all times

3: Be Strategic 

Consider the time of day in which your loved one is at their best, and schedule your time of departure (car ride, air travel) during those hours. This prevents confusion and agitation that can arise when leaving home or where you’re staying.

4: Be a Communicator 

Providing a detailed itinerary to emergency contacts is the best way for others to keep tabs on you and your loved one, especially if your loved one is traveling alone. Notifying hotel and airline staff that the person you’re traveling with has Alzheimer’s disease is another good idea to ensure any helpful or necessary accommodation during your trip.

5: Be Prepared 

Aside from the necessities of remembering to bring along your loved one’s medications, it is also important to keep comfort items on-hand such as blankets, pillows, or their favorite coat in case he or she becomes anxious at some point while traveling. Keeping to a schedule and leaving for your destination within a reasonable amount of time reduces the stress experienced by your loved one that may come around in a case of rushing to catch your flight or dinner reservation.

 

Sponsor Spotlight: Premiere Research Institute

The founders of Premiere Research Institute have been conducting clinical research since 1983.  Premiere Research Institute has long been recognized as one of the leading clinical research institutions in the world.

Carl Sadowsky M.D., Paul Winner D.O. and Walter Martinez M.D. are dedicated to providing innovative solutions for patients with neurological disorders.  They have authored numerous articles in prestigious medical journals and have been recognized as “Best Doctors in America”.

As Principal Investigators they have over 75 years of combined clinical experience, and are on the cutting edge of new and exciting research programs.

Website: http://www.premiereresearchinstitute.com

Facebook: Premiere Research Institute

YouTube: https://www.youtube.com/user/PremiereResearchInst?feature=guide

Twitter: PalmBeachNeuro

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Millennials And Caregiving: The New Era Part 2

By: Jehan Wilson

For the past few years, some have viewed millennials as an impulsive group of individuals that choose to chase after the trills of life by themselves rather than adopting a “family first” mentality like their Baby Booming predecessors. As a result, it has been implied as common knowledge that millennials first seek pursuing their own professional goals or personal dreams before they even consider starting a family of their own. Contributor Neil Howe of Forbes Magazine took an interesting approach on this topic, expressing that “millennials are unfamiliar with a broad range of life skills. They are less likely than older generations to know how to sew, make basic home repairs, or drive manual-transmission cars.” In his article entitled Millennials struggles to pass Life Skills 101”, Howe is critiquing the millennial’s ability to develop basic life skills because of their dependence to develop academic skills. Although, I believe it is safe to suggest that life skills can range from knowing how to simply sew or do care repairs to cook, clean, and care for family or friends that may be unable to.

The Alzheimer’s Media Insider (ALZ) conducted a very unique study on Caregiving in May of this year which results showcase Millennials in a new light that may cause Howe to second guess his notice that generation Y is lacking the skills for life. For instance, findings from the Alzheimer’s Association express that 85% of Millennials said being a primary caregiver for someone has positively changed their family relationship. Specifically, when it comes to caregivers committing to value and care for individuals suffering from Alzheimer’s disease, Millennials are 35% more likely to feel this way than the average caregiver, 37% more likely than Generation Xers, and 64% more likely than Baby Boomers.  In addition, the findings during this ALZ study expressed that 47% of caregivers expressed developing a stronger relationship with the individual under their care”.

The experience of caring for an individual with Alzheimer’s disease is so rewarding for the millennial because the moments shared with that other person are one’s that only the millennial will remember. The value of these fleeting moments between an Alzheimer patient and their caregiver have the ability to shape a millennials future; Just take the testimony of 24 year old Brittany Williams for instance. On Blackdoctor.org, Williams shared her story of becoming the primary caregiver to her mother (who was diagnosed with early-onset Alzheimer) and her four siblings. Expressing herself as “a woefully unprepared 24 year old tasked with organizing a cross-country move, providing full-time care to my mother, and toeing the line between big sister and parent her siblings”; Williams does her best to care for her family until her mother’s passing two years later. After the passing of her mother, Williams expressed “I deeply miss my mother but I have peace because I cared for her in the way that she cared for me. Worldwide, millennials are faced with the numerous challenges of being caregivers to those with Alzheimer’s disease and others alike. But even with those differences, one thing remains constant:  What we do with our time now contributes to who we will be in the future.

** For more Stats of the ALZ study on Millennials and Caregiving, review the findings at : http://preview.alz.org/media_105280.asp#millenials

** To Read about Brittany Williams and her process of caring for her mother, check out her story at: https://blackdoctor.org/514837/my-story-alzheimers-and-a-mothers-unforgettable-love/

Millennials And Caregiving: The New Era Part 1

By: Jehan Wilson

Millennials, often times referred to “as Generation Y or the Net Generation, are the demographic cohort that directly follows Generation X,” serve as the vocal point for the Summer 201 edition of the ALZ Media Insider.

Being a caregiver is a tremulous task that many people have to encounter throughout their lifetime. When it pertains to the world of Alzheimer’s, in which, there is currently no cure available; caregiving becomes the only alternative. One aspect that has changed over the years when it relates to caregiving is the age of the caregiver. Studies show that 85 percent of millennials said that being the primary caregiver to someone with Alzheimer’s or dementia has positively changed their relations in their family.

While almost another half of millennials, approximately 47 percent believe that they developed a stronger relationship with the person they were caring for as well as gained a better understanding regarding how Alzheimer’s truly effects each individual differently.

Overall, to the millions of people suffering from Alzheimer’s across the country, caregivers serve as their “superheros” that allow them to continue their fight against Alzheimer’s until a cure is made.

 

 

 

 

Sandy’s Story: A Tribute to My Father

By Sandy Fleming

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A young Sandy with his father.

My most influential early memory of my father is of the day he gave the eulogy at his own father’s funeral. Even though I was only 10, I remember being rapt with admiration at the awesome composure and eloquence with which he delivered what must have been the most difficult address of his prolific public speaking career. That moment held particular meaning for me because it was the first time I had ever heard anyone adequately express the combination of affection and veneration for their father that I felt for him. I was listening to my hero describe his hero in a way that validated my own filial pride as his son.

My Dad is the middle of three sons born to a World War II Army Intelligence Officer turned political science professor and the Parisian hat seamstress he fell in love with while deployed during the Nazi occupation of France. He was so proud to be his parents’ son, and he worked tirelessly to live up to their example of intellectualism, patriotism, and compassionate civic duty. He somehow managed to be the smartest person in most rooms without betraying a hint of superiority or pretention. I loved to do crossword puzzles with him, but I always walked away with the sneaking suspicion that while he’d let me work out a couple of the clues so I could feel like I’d contributed, he probably could have done it faster without me.

He was fiercely passionate about his moral and political beliefs, but he never let his passion supersede his courtesy and composure. He practiced a nostalgic style of etiquette and chivalry, to the point that the only times I remember him losing his temper were when I talked back or lied to my Mom. While honesty and respect were nonnegotiable, his love for me was unconditional.

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(From right) Sandy, his mother, and his father

I never really thought of my dad as old, though I suppose in retrospect he was on the older side relative to my friends’ parents. When I left for college in 2007, he was 58 and had retired from his career as a litigator and public servant. When you’re away from someone for extended periods of time, the gradual changes in their behavior are a little easier to spot because you witness their cumulative effect all at once, instead of constant, desensitizing exposure to the slow, subtle deterioration. Every time I came home from school, the frequency of little uncharacteristic and absentminded mistakes began to steadily grow. Reluctant to inflict the devastation she expected from me, my mom waited until I had graduated in 2011 to tell me that my dad had been diagnosed with early-onset Alzheimer’s disease earlier that year. She was astonished at my lack of surprise. He was 62.

By now I’m sure you’ve realized how fortunate I feel to have been born to my parents. Trust me, I could write just as long and heartfelt a tribute to my mom, particularly in light of her heroism since my dad’s diagnosis, but for your sake I’ll save that for another piece. It is a cruel affliction to lose a parent you worship just at the age that you finally grow up enough to appreciate the titanic generosity of parenting and start to look forward to an adult relationship with them. It is something worse to watch their eyes slowly cloud with fear and confusion as their mind, their most reliable asset, begins to betray them with accelerating frequency. There is no better moniker than “The Long Goodbye.”

Since his diagnosis, one of the only comforts for my family has been the support of the Alzheimer’s Association. Not only do they raise desperately needed funds for cure seeking research, but they also provided my mom with reassuring but candid information about the realities of caretaking for loved ones with Alzheimer’s. I could always hear relief in her voice when we would talk after a meeting with their support group, a community of patients and caretakers that helped to mitigate the isolation and stigma of an early onset diagnosis.

Last fall my fiancée, Brianne, recommended that we volunteer to participate and help fundraise for The Palm Beach Walk to End Alzheimer’s. I immediately called my mom to verify her experience with the Association because I knew she would give me her candid opinion of the organization’s services. She unequivocally told me that the Alzheimer’s Association had been an invaluable resource to her, particularly during the early stages when she was seeking information about treatment, expectations for the disease’s progression, and future external care options. Her resounding endorsement sprung us into action and we began soliciting our personal and professional networks for walkers and donations.

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Sandy and Brianne at the 2016 Walk to End Alzheimer’s

At 28 years old, I should not have to refer to my living father in the past tense. Alzheimer’s disease is not reserved for elderly people who have lived full lives and had a chance to know their grandchildren or remember their son’s wedding. Today, I try to be worthy of sharing his name, my most prized possession, and I hope that I find a way to emulate his parenting when I have kids, even though I won’t get to ask him for advice. Our donations of time and money are the lifeblood of organizations like the Alzheimer’s Association who provide comfort to patients and loved ones through support and community, and fight every day to help find a cure.