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

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“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…

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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

Special Holiday Tip from Carol Poole – a Floridian living with Alzheimer’s…

A Special Holiday Tip from Carol Poole, a Floridian Living with Alzheimer’s: 

“Let your pals help you during the holidays. They want to do something helpful; but they aren’t sure what you really need. It truly reduced my anxiety to make a list of things to accomplish over the holidays, and have friends and family help me with that list.

I told them their help is a great Christmas gift to me. They also gave made me a memory book  – from Shutterfly – with pictures of our fun times over the years. It sparked my memories. What a treasure.

This applies not only to people with the disease, but their caregivers too, like my darling husband, Ken”.

We NEED a First Survivor for Alzheimer’s – a Memorial Essay…

By Amanda Rittenberry – November 2016

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I’ve had a lot of people ask me lately how I’m doing. My standard response is “fine, thank you for asking”. I haven’t shown much emotion since my father passed away a mere month ago. Some may find it weird, some may think I’m on my way to a major breakdown (maybe I am) and some may think I simply don’t care. What most don’t realize is that the disease took him from me years ago. It has been at least 4 years since the last time we held a real conversation, 3 years from the first time he asked me my name, 2 years since I’ve heard his voice coherently and then this past year – nothing but pain and suffering for my family.

On October 18th, 2016 Alzheimer’s finally took my Daddy. It’s an odd feeling – I am selfish and want him here with me but no body deserves to live in the condition that Alzheimer’s left him in.

My Stepmom (who is a super hero in my opinion) was by his side as he left us. Moments before he passed I was able to tell him over the phone that I loved him and it was OK for him to go, and he did.

The minutes, hours and days to follow were a whirlwind. Between calls to the family, arrangements and traveling there wasn’t much time for my own emotions. The love and support from everyone was overwhelming. For me personally, it seemed like his death had already happened so long ago. At this point I was just putting into place all the things I had been preparing for since his diagnosis in 2009.

I have missed my dad for years even though he was still here. I mourned his death before he physically died and learned how to live without him before I really had to. I think that’s what the disease does to those around the person suffering. You go numb because it’s the only way to get through it, there is no hope, there is no survivor, there is only the love you have for them and the peace you wish them.

We still need our first survivor and sadly my Dad wasn’t him. I’m pleading with everyone to get involved – I’m 32 years old and my dad is gone and has been (mentally) since I was 28. That’s too young to lose a parent. Help put an end to Alzheimer’s!

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Actor and comedian Seth Rogen and his wife, Lauren Miller Rogen, have found a unique way to fight Alzheimer’s – a condition that isn’t usually a laughing matter…

Actor and comedian Seth Rogen and his wife, Lauren Miller Rogen, have found a unique way to fight Alzheimer’s — a condition that isn’t usually a laughing matter.

The couple know its effects firsthand: Lauren’s mother, Adele, was diagnosed with early-onset Alzheimer’s at 55. The actress and comedienne also lost two grandparents to the disease.Seth and Lauren Miller Rogen

As a way to raise awareness among millennials — along with money for research and care — the pair decided to do what they do best: Make people laugh. The result was Hilarity for Charity. The variety show, now an annual fundraiser held in Los Angeles, has drawn support from the likes of Paul Rudd, Bruno Mars, The Backstreet Boys, and Samuel L. Jackson, among others.

Since the organization’s founding in 2012, the events have raised more than $5 million. In 2014, the Rogens launched HFC U to encourage college groups to host their own versions.

“I want young people to know that Alzheimer’s isn’t something to worry about just when you get old,” Rogen says in his Hilarity for Charity bio. “And that we can tell a few jokes along the way to finding a cure.” The duo are also Celebrity Champions for the Alzheimer’s Association.

Click on this link to see the whole video! http://www.webmd.com/healthheroes/video-seth-lauren-rogen

Holiday Tips – How to Manage the Holidays when your loved one has dementia or Alzheimer’s disease

The holidays are  full of emotions, so it can help to let guests know what to expect before they arrive.

If the person is in the early stages of Alzheimer’s, relatives and friends might not notice any changes. But the person with dementia may have trouble following conversation or tend to repeat him- or herself.  Family can help with communication by being patient, not interrupting or correcting, and giving the person time to finish his or her thoughts.

If the person is in the middle or late stages of Alzheimer’s, there may be significant changes in cognitive abilities since the last time an out-of-town friend or relative has visited.  These changes can be hard to accept. Make sure visitors understand that changes in behavior and memory are caused by the disease and not the person.   

You may find this easier to share changes in a letter or email that can be sent to multiple recipients. Here are some examples:

  • “I’m writing to let you know how things are going at our house. While we’re looking forward to your visit, we thought it might be helpful if you understood our current situation before you arrive.
  •  “You may notice that ___ has changed since you last saw him/her. Among the changes you may notice are ___.
  •  “Because ___ sometimes has problems remembering and thinking clearly, his/her behavior is a little unpredictable.
  • “Please understand that ___ may not remember who you are and may confuse you with someone else. Please don’t feel offended by this. He/she appreciates your being with us and so do I.”

TO SEE OUR ENTIRE HOLIDAY TIP GUIDE, VISIT THIS LINK!

https://www.alz.org/care/alzheimers-dementia-holidays.asp

For more ideas on how to let others know about changes in your loved one, join ALZConnected, our online support community where caregivers like you share tips on what has worked for them.