Kentucky Derby Viewing Party hosted at the Mezz in Orlando – a Great Success!

horsesHats, Horses and Hope! Thank you to everyone for helping us put together our First Annual Derby Viewing Party: Hats, Horses & Hope; what a beautiful evening it was!

No matter which horse was crowned the champion on Derby Day (“Always Dreaming” for all you Derby enthusiasts); the Alzheimer’s Association took the ultimate prize!

The Hats, Horses & Hope party was a festive and exciting occasion where participants enjoyed watching the Kentucky Derby and did a little friendly betting for prizes, while raising funds and awareness for Alzheimer’s programs and support services in our area.

We are so grateful for all the support and time our local volunteers and partners have given to make this important event possible!

Special Thanks to:

Our Community Partners:

Sawyer & Saywer PA

Huffman Wealth Advisory of Raymond James

Jockey Level Sponsors:

Brookdale of Lake Orienta, Neha Doshi, MD, and Mercury Plumbing

And…

3.6.9 Chinese Restaurant

4 Rivers Smokehouse

Air Tech of Central Florida

Amie Stafford, Portraitist

All In! Casino Events

Apple Blossom Florist and Gifts

Be On Park Fine Jewelry

Blown Away Winter Park

Boston’s Fish House

Brazas Chicken

Briarpatch Restaurant & Ice Cream Parlor

Brookdale of Lake Orienta

Bryan Johnson

Charmine Frase Hair Design

Chi Pan Asian

City Oasis

Cooper’s Hawk Winery and Restaurant

Cottonways

Darlene Fritsma

Dr. Jennifer Ortega, DMD

Durian Durian

Edible Arrangements Winter Park

Emily Stouffer

Eye Physicians of Central Florida

Hand & Stone

Hawks Landing Golf Club

Huffman Wealth Advisory of Raymond James

Laughing Monkey Pottery

Longwood Veterinary Clinic

Luma on Park Avenue

M.A. Porter, Artist

Ma’s Art and Stuff

M&M Nail Salon

MacDoctor

Macy’s

Maitland Avenue Dental

Margaret Kinsey

Mercury Plumbing

Neha Doshi, MD

Orlando Art Museum

Orlando Shakespeare Theater

Neha Doshi, MD

Paddleboard Orlando

Panera

Pizzeria Valdiano

Robert Kinsey

Rock and Brews Oviedo

Romano’s Macaroni Grill

Sawyer & Saywer PA

Seasons 52

Siegel’s Clothing Company for Women and Men

St. Johns Rivership Company

TerraMia Wine Bar and Trattoria

The Great Escape Room

The Parkview

Tim’s Wine Market

Trader Joe’s

Truffles and Trifles

Tuni Trendy + Chic

Viet Garden Restaurant

Vinzo’s Italian Grill and Pizzeria

Visa

Youfit Health Clubs 

Orlando Science Center

Salsa Heat Dance Studio

Saylor Physical Therapy

Winter Park Distilling Company

Taking Care of You – When a loved one has Alzheimer’s

Taking care of you: When a loved one has Alzheimer’s — The Interview

By Michael Joe Murphy

Nearly 25 percent of Florida’s population is age 60 years and older, and more than half a million of these seniors are living with Alzheimer’s. To learn more about the prevalence and treatment of Alzheimer’s, the Orlando Sentinel Editorial Board tapped the expertise of Rosemary Laird, M.D., a geriatrician at Florida Hospital’s Centre for Senior Health. As a backdrop, Florida’s Legislature is considering a $20 million budget cut that would affect seven memory disorder clinics in the state, even as Sen. David Simmons, R-Altamonte Springs, sponsors a bill to designate a memory disorder clinic at Florida Hospital in Orlando.

Q: What does treatment for Alzheimer’s involve?

A: Ideally, treatment for Alzheimer’s disease involves a team of professionals trained in the disease and experienced with the course of the illness assisting patients and their families through the course of this chronic illness. I say “ideally” because that type of team-based care is not readily available everywhere. Often it is found in academic medical centers and some community-based health systems. To address the range of needs an ideal care team includes a medical doctor, an advance-practice registered nurse, and a licensed clinical social worker, and perhaps even a pharmacist. Florida Hopsital’s Centre for Senior Health is an example of a team-based clinic providing full range of diagnosis and care support.

There are traditional, FDA-approved medications that have shown benefit in about 40 percent to 50 percent of the patients who take them. Benefits can include slowing the decline of cognitive ability or memory loss, and slowing the loss of function.

There is a misconception that because there is no “cure” for Alzheimer’s, there is no “treatment.” That cannot be further from the truth. There are many strategies we can take to assist the patient and family in coping with the changes of the illness, adapting their day-to-day routines, as well as the need to address symptoms that are common accompaniments of Alzheimer’s disease such as depression, anxiety, sleep disturbance, weight changes, etc.

Sadly, even among physicians sometimes there is a pessimistic outlook communicated that there is “nothing to be done,” so we try to make people aware of the availability of support.

Q: How prevalent are Alzheimer’s and other diseases that affect memory?

A: According to the Alzheimer’s Association, more than 5 million Americans are living with the disease. There are 480,000 people with Alzheimer’s disease or related disorders in the state of Florida. Here in Central Florida, we believe there are about 30,000 patients with Alzheimer’s living in Orange, Osceola and Seminole counties.

Q: Are certain populations more at risk?

A: Almost two-thirds of Americans with Alzheimer’s are women, and there are differences among different ethnic groups as well. African-Americans are about twice as likely to have Alzheimer’s or other dementias as older whites. And Hispanics are about one and one-half times as likely to have Alzheimer’s or other dementias as older whites. Studies have found that diabetes and cardiovascular risk factors — such as high levels of blood pressure, blood sugar and cholesterol — increase the risk of dementia.

Q: What are the trends in how many people will be diagnosed?

A: This is an interesting question. There was a study that found dementia rates are actually declining. The decline may be due to an increase in medications to treat risk factors such as cholesterol and high blood pressure, and to improved awareness of the need for brain health and wellness among many seniors. But simply being 85 years old and older is a risk factor, so as the population ages in the coming decades, we will still see many, many patients.

Q: Are there any improved treatments or breakthroughs on the horizon by drug makers on Alzheimer’s?

A: The short answer, unfortunately, is no. There are many, many issues with clinical trials involving Alzheimer’s. Since the diagnosis is so difficult, it is hard to know you are testing effectiveness against Alzheimer’s when you test a drug. Some scientists believe that by the time the brain shows signs of the disease, it may already be too late to treat the damage with drugs. People should know that it’s unlikely that there will be a cure in the next 20 to 30 years. Those of us with aging parents should be prepared for the possibility that we will need to act as caregivers.

Q: What advice do you have for caregivers to help handle the burden of caring for a loved one with the disease?

A: I co-wrote “Take Your Oxygen First: Protecting Your Health and Happiness While Caring for a Loved One with Memory Loss” about this issue. And that’s a main point I would stress to caregivers. This is a long illness, involving the slow loss of ability and the increased need for care support over time, so the impacts are enormous not only on the patient but on the caregiver. You have to take care of yourself first, or the chronic stress of caregiving over such a long time horizon will add illness to your life, in addition to your loved one’s illness.

Q: What is the importance of pending legislation establishing a memory disorder clinic at Florida Hospital?

A: Since 2012, Florida Hospital has operated its self-funded memory disorder program, the Florida Hospital Maturing Minds Clinic. FHMMP provides early screening and diagnosis; helps patients manage their symptoms; provides education and training for caregivers; and conducts research. FHMMP currently conducts more than 360 new patient memory loss evaluations each year and provides services and referrals to other local organizations to additional patients and caregiver clients.

The pending legislation would add our clinic to the list of state-recognized memory disorder clinics. This change will give us a competitive advantage when we apply for state and national grants, potentially bringing federal funding home to Florida. It will also help us continue to grow our programs offering state-of-the-art diagnosis and care for patients with Alzheimer’s and related dementias and support for their caregivers here in Central Florida.

As appeared here in Orlando Sentinel
Copyright © 2017, Orlando Sentinel

New COUPLES group at Camellia

The first “Coping as Couples” Early Stage Support Group will be meeting on May 9th.  The community is continuing to host a traditional caregiver support group at 5:30 PM.  The couples group will meet in a separate room an hour later at 6:30pm.
Camellia at Deerwood – Coping as Couples
Early Stage Support Group for Couples
10061 Sweetwater Parkway, Jacksonville, FL 32233
2nd Tuesday of Every Month 6:30 PM2016_CareAndSupportShoot_Chicago_DayTwo_187
Facilitators:
Carla and Liz
Refreshments served.
RSVPs are required, call our Helpline at 1-800-272-3900

Contact: Helpline
Email: infocnfl@alz.org
Phone: 800-272-3900

2016_CareAndSupportShoot_Chicago_DayTwo_198Support groups create a safe, confidential, supportive environment or community and a
chance for participants to develop informal mutual support and social relationships. They also educate and inform participants about dementia and help participants develop methods and skills to solve problems.

The groups encourage caregivers to maintain theirown personal, physical and emotional health as well as optimally care for the person with dementia. In addition, they may provide a needed break from caregiving responsibilities.

We Need You to Call Today and Monday – Don’t Let Lawmakers Cut Alzheimer’s Budget in Florida

Fellow Floridians – There is a proposal promo-older-adult-800x468before the Florida Senate to CUT 14 Florida  Memory Disorder Clinics, the Florida Memory Mobile and many other Alzheimer’s Initiatives across the state. We need to ask Senator Flores, Chairwoman, NOT TO CUT THESE IMPERATIVE PROGRAMS in Florida! We can’t afford to cut Alzheimer’s initiatives in our state!

Call Chairwoman, Senator Flores: (850) 487-5039 today and Monday! #NO2BudgetCuts4ALZ.

Florida’s network of 14 regional Memory Disorder Clinics (MDCs) provide:

  • cappprojectComprehensive me
    mory assessments
  • Diagnostic services
  • Treatment to individuals with symptoms of Alzheimer’s disease and related dementias
  • development of training programs
  • Education on how to provide care for those living with Alzheimer’s to family, direct service caregivers, respite care providers, health care professionals and the general public

They also participate in research toward effective treatments and cure for Alzheimer’s disease.

Other Alzheimer’s services are being threatened as well including the Memory Mobile that services the Florida Gulf Coast area. It is the only mobile support, prevention and education service delivery
vehicle in the country. The Memory Mobile provides many of the same services as the Memory Disorder Clinics and it able to go out into the community for outreach education, care consultations, memory education and caregiver education targeting low income, rural, and/or isolated people living with Alzheimer’s disease and their caregivers.

Two more things you can do after you have called Sen. Flores:

Call your Florida state senator.  Find them here and call Friday and Monday!

Call any or all of the senators on the committee: Screen Shot 2017-03-14 at 12.52.35 PM

Don’t Let our State Cut Memory Disorder Clinics from the Budget; Call, Tweet, or Email Your Legislator NOW! We Need Your Voice TODAY!

JUST CLICK THIS TEXT TO FIND YOUR LEGISLATOR HERE AND CONTACT THEM TODAY!

March 10, 2017

Dear State Legislators,

On behalf of the Florida Chapters of the Alzheimer’s Association, I write to garner your support to halt the reduction of funds in the DOEA budget supporting the statewide Memory Disorder Clinics.promo-older-adult-800x468.jpg One of the foundational components of Florida’s Alzheimer’s Disease Initiative, this network of 15 regional Memory Disorder Clinics (MDCs) provide comprehensive assessments, diagnostic services, and treatment to individuals who exhibit symptoms of Alzheimer’s disease and related dementias. The clinics develop training programs and provide education on understanding and providing care to address the challenges of Alzheimer’s and dementia for family and direct service caregivers, respite care providers, and health care professionals in the care of persons with the diseases and the general public. The MDCs also participate in research toward effective treatments and an ultimate cure for Alzheimer’s disease. Included in these proposed cuts is the Alzheimer’s Association Memory Mobile offering services in the Florida Gulf Coast Area.

Much as the Alzheimer’s Association does as a non-profit entity, these facilities are vital to the well-being of the nearly 500,000 persons with Alzheimer’s disease in the state of Florida, which has the second highest incidence of the disease in the US. And according to the most recent report 2017 Fact and Figures, issued this week by the Alzheimer’s Association, that number is expected to increase significantly.cappproject.jpg

From July 1, 2015, to June 30, 2016, the Memory Disorder Clinics across the state completed 9,810 medical memory evaluations; saw 4,745 new patients, with 16,569 office visits made by patients and their caregivers. They provided 1,529 free memory screenings and 26,739 referrals were made to the medical or community services for patients and families who visited.

In the face of the Alzheimer’s public health crisis, we simply cannot do without the work of the Memory Disorder Clinics. We respectfully urge you to continue funding this vital health resource.

Sincerely,

Kathryn E. Redington, CEO

for: Alzheimer’s Association

Central & North Florida Chapter //  Florida Gulf Coast Chapter // Southeast Florida Chapter

FullSizeRender-8

“Although purple is the color of Alzheimer’s
Awareness, it is also the color that is
created when Red and Blue are together. As Republicans and Democrats, we must all unite to fight this devastating disease.”

Rep. Scott Plakon and Rep. Matt Willhite

These senators are on the committee that will vote on the proposed budget cuts. Contact them to let them know the importance of these facilities and services in your community.Screen Shot 2017-03-14 at 12.52.35 PM

FIND YOUR LEGISLATOR HERE AND CONTACT THEM TODAY!

How does a “Whisper” Turn into a Cure? How does a “Stigma” become a Treatment? When Will We Meet the First Survivor of Alzheimer’s?

How does a “Whisper” Turn into a Cure? How does a “Stigma” become a Treatment? When Will We Meet the First Survivor of Alzheimer’s?

Nobody survives Alzheimer’s. No one walks away from the disease having beaten anything. There are no winners; no one to claim victory. That’s the stark reality of today, and the harsh certainty for families given the diagnosis of Alzheimer’s or another form of dementia.  We don’t have to imagine a healthcare epidemic that has no known cure. We are facing it now, amidst a flurry of anxious thoughts that come when mom can’t remember how to make that chicken soup she’s made for over 30 years. We face the depth and breadth of it in the sinking moment our sister tells us she got lost going to her daughter’s house that’s been just down the street for a long, long time. We are “slapped’ with it the day our husband can’t think of his secretary’s name – the one that’s worked with him for over ten years…  maxresdefault-1

Today, the “A” word accounts for the same terrible whispers the “C” word had when we were younger – the days when our parents, friends and neighbors couldn’t even say the actual word, “cancer” at the dinner table. Now, like it was then, there are murmurs in the church pews; there are knowing, sympathetic glances from others when our loved ones forget who they are talking to, or where they are. There are nights when we finally recognize we’ve been so overcome by Alzheimer’s disease, for so long that people have stopped asking if they can help. There’s no need to imagine what Alzheimer’s and its affects looks like…we can see it in our loved ones’ faces. It’s there, insidiously weaving plaques and tangles through memories we’ve taken a lifetime to make.

But, that is our present; and tomorrow’s prospect is where we cast our hope. The first person to survive Alzheimer’s is out there. They’re going to hold onto everything the disease steals away. That smile they can’t hide – that dance class they love… every single piece of them is going to make it through because research and science is beginning to catch up to the disease. Our government is starting to listen. Our communities, and our families, aren’t whispering the “A” word any more.  We are living painful moments without a cure; now… But, what if we could imagine a future that survived Alzheimer’s?

maxresdefault.jpgHow does a “whisper” turn into a cure? How does a “stigma” become a treatment? It happens when our neighborhoods, our schools, our government, our families, our caregivers start beating the drum – the reverberation of voices multiplied, “Enough. We’ve had enough”. The present tells us that Alzheimer’s disease is the only top-ten leading cause of death in our country that has no prevention, treatment or cure. Currently, science can’t even slow it down.

Our future tells us that by funding research, advancing public policy and spurring scientific breakthroughs…and by providing local support to those living with the disease and their caregivers – the Alzheimer’s Association will continue to ease the burden for all those facing it until we accomplish our collective goal. The goal we share with every family who has to hear the word “Alzheimer’s” delivered in a diagnosis. And, this goal we share isn’t elaborate. We just want what every family who faces Alzheimer’s wants – a survivor – a glimmer of hope. But, we won’t know any kind of victory without challenging our awareness and our actions as a collective community of hopefuls. We need to start considering participation in clinical trials, so we have more research and data in the pipeline. We need to ask questions and start exacting answers from our elected officials when it comes to funding important research and support services in our country and our state. Florida has the 2nd highest prevalence in the country. And, we don’t want to be a state known for this kind of human casualty. Alzheimer’s disease has devastated millions of lives; half-a-million of them here, in the Sunshine State. But that can and will change when we reach the first survivor. Don’t just hope for a cure, help find one.

Trial Match Clinical Trials: trialmatch.alz.org // Alzheimer’s Advocacy: alz.org/advocacy // Education Services and Support: alz.org/care // 24.7 Helpline: 1.800.272.3900

 

Virtual Dementia Tour Was a Small Taste of the Misery that is Alzheimer’s…

By Hannah Volz, Assistant Director of Community Outreach/ Alzheimer’s Association

Today, like most days, was crazy… I know many of my friends and coworkers understand what it’s like to go nonstop into back-to-back meetings and never really have a moment to pause and breathe. At the end of this particularly crazy-busy day, I scheduled myself to participate in a virtual dementia training experience.

Not really knowing what to expect, I rushed into the assisted living facility hosting the virtual dementia training, with just a couple of minutes to spare. I found my seat, and took  the first moment I had all day to catch a deep, even breath.

AND THEN SOMETHING VERY UNEXPECTED HAPPENED…

I don’t think I was fully prepared mentally or physically for what happened over the next two hours… While I had the general knowledge that the virtual dementia training was difficult, I could never have made myself ready for what transpired…And even though I know the tour can in no way give me a full experience of what living with Alzheimer’s and dementia is like, I was terrified, confused, disturbed, anxiety-ridden, embarrassed and exhausted for a few hours. I can’t imagine this experience 24 hours a day, 7 days a week.

WELCOME TO THE TOUR…

Essentially what happens in a virtual dementia training is that you are provided with materials like sticky gloves that limit your dexterity. You also receive eye glasses that limit your vision, shoe inserts that make it uncomfortable to walk, and bulky headphones that play a very (VERY) noisy and disorienting soundtrack. Then an instructor very quietly gives you a set of tasks to accomplish in five minutes and leads you into a room to do the tasks she asked you to do. I was already unnerved. I couldn’t hear a word the instructor told me, and stood in the middle of the room bewildhannah-picered and confused until she pointed at something to lead me in the right direction. P.S. She didn’t.

To be candid, I was bordering on a panic attack – fumbling around confused, frustrated, and embarrassed as the instructor watched me muddle through folding the pile of clothes on the chair and attempt to set a dinner table. I’m still not entirely sure if that was what I was supposed to be doing in the first place. The simple tasks were extremely hard, and it was only a small taste of life with dementia.

ALZHEIMER’S SUCKS 

ALZHEIMER’S SUCKS! This is an extreme understatement. In my weary and somewhat now-fragile mental state, I have no other way to describe it. But I’m so proud of the work the Alzheimer’s Association is doing to care and support those facing the disease today and the goals they have for the future. I wouldn’t be anywhere else than here. #ENDALZ

Alzheimer’s Sucker-Punched Me…

evans-photo

Evan at Work…

Like most college students, Alzheimer’s wasn’t something I thought about. In fact, I knew little about the disease – other than it robbed people of their memories . Then, I started talking to a friend of mine who works for the Alzheimer’s Association and thought maybe interning could be my chance to gain experience and do something for people who needed my help. It felt invigorating and empowering to think of beginning a career this way. That was when I didn’t really know Alzheimer’s intimately.

I called my family to share the news of the internship and in that conversation, they unfortunately told me about my grandfather’s recent diagnosis. BAM! Alzheimer’s sucker-punched me. The day I took the internship, I simultaneously gained a clear sense of purpose for my career while coming face-to-face with Alzheimer’s. This was the day I began to lose someone I love to this insidious disease. I discovered a new form of heartbreak that millions have experienced before me – millions of people I would hope to serve.

My grandfather, a person who has helped shape my world, can no longer remember his favorite moments  – like the fact that he was the first human being ever to hold me as a baby. Soon, he will not recognize my face.  And I’ve learned, that Alzheimer’s affects more than just the individual living with the disease. It is a devastating force-multiplied; affecting everyone caring for, or about, the person with the disease  And, everyone, including the person with Alzheimer’s, will hold on to memories that are constantly slipping away into a dark and viscous abyss of amyloid plaques and tangles.  The loving moments we share as humans are the moments I fight for every day. What are we if not the love and life we have together as people?

I work harder and with newfound passion, so others won’t experience the despair I now know when my beloved grandfather forgets my name. I fight to protect families like mine, watching loved ones’ minds and memories disappear under the crumbling weight of stress a family must endure when they watch the person they love disappear without actually dying. I fight for the precious memories we have that take a lifetime to collect, and then painfully and nightmarishly vanish. I fight because the day I joined the Alzheimer’s Association was also the day my grandfather didn’t know he was talking to me. He will forget, but I will fight for a generation of young people who always remember. Our generation must make Alzheimer’s disease a priority or we are doomed to inherit this disease in exponential proportions.

Evan Holler, University of North Florida Student

Dealing with Stress…

By David Huckabee

Wouldn’t it be nice if once we were dealing with one large stress in life, all the other stressors simply disappeared or at least waited their turn? Unfortunately, this isn’t the case. For caregivers, the stresses associated with caring for a loved one who is dealing with any serious illness does not happen in a vacuum. The stress associated with work, finances, family relationships, traffic, and life in general keep coming. Not only that, but they can often seem magnified in the face of our already david huckabee profile picdifficult caregiving responsibilities.

While I do not know of any magic spell that can eliminate the stress from a caregiver’s life, we at the Alzheimer’s Association do offer some tips that have been shown to work at making the stress level manageable. Here are a few tips for your consideration.

1.  Ask for help. It sounds so simple and yet it is often one of the most difficult things for adults to do. Pride, fear, and a host of other factors keep us from asking for help when we need it. The result of this is that we wait until we are so overburdened that help becomes much more difficult to give.

2. Get organized and stay organized. If we don’t know exactly what needs to be done, then the smallest tasks can feel overwhelming. Make to-do lists. Check off tasks as they are complete. What tasks can someone else do for you to lessen your own stress? Your neighbor keeps asking what she can do to help. Give her something concrete to do. She will feel better and you will have one fewer thing to do before you can rest.

3. Take care of yourself. Too many of us (I count myself among the guilty) put off our own needs while we are engaged as caregivers. We skip our own doctor’s appointments, we eat on the run, and we go without quality sleep. Unfortunately, what seems like a noble use of our time and resources can have serious consequences. Ask yourself the hard question. Who could (or would) step in if I got so sick that I could no longer function as a caregiver? Then do whatever you can to prevent that from happening.

4. Taking care of you also means taking time for you. Try to carve at least a few minutes out of each day to do something you know relaxes you. Yoga, tai chi, listening to music, going for a walk… the list of possibilities goes on and on. The important thing is to make sure it happens.

5. Watch for signs that your stress level is getting too high. Being a caregiver is stressful. As already mentioned, there is no way to eliminate that reality. However, managing your stress is crucial for your own well-being and that of your care partner. I often find that having someone else you trust is important. We often do not recognize the signs of stress in ourselves. A trusted friend or family member can let us know that we appear to be reaching the breaking point. If you would like more information about the work of the Alzheimer’s Association Central and North Florida, please call (800) 272-3900 or contact David Huckabee at dhuckabee@alz.org.

Alzheimer’s Falls More Heavily on Women Than on Men – an article published in Scientific American – 12/16

Distinct biological and genetic factors may shape how it progresses in women—and understanding them could be crucial to prevention, diagnosis and treatment

By Heather M. Snyder on December 28, 2016

This woman, Auguste Deter, was the first to be described by Alois Alzheimer with the disease that would one day bear his name. Credit: Public Domain

Dr. Heather Snyder works for the Alzheimer’s Association and appeared as a Guest Blogger on Scientific American’s Blog. See full article link below:

 https://blogs.scientificamerican.com/mind-guest-blog/alzheimers-falls-more-heavily-on-women-than-on-men/?WT.mc_id=enews2017_01_04&utm_source=enews-aff-37&utm_medium=email&utm_campaign=enews-2017-01-04