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The Gateway
In This Issue
What's New
Caregivers' Corner
The AFTD-Team
Words of enCOURAGEment

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Issue: # 5
June 2012
What's New

FTD in the News: Two big stories about FTD made headlines recently in the LA Times and the New York Times. The story of Moe and Stuart Bryant ran in the LA Times in February. The New York Times told of the Frenches' journey with FTD in a May 6 front-page story.

 

AFTD Celebrates 10 Years:  Please join us on October 19 at the Pyramid Club in the heart of Philadelphia for AFTD's 10th Anniversary "Care and Cure" Event! The evening will include: cocktails, specialty food stations, silent auction and entertainment. Local restauranteur Susanna Foo will showcase her fine Chinese cuisine and other prominent restaurateurs will also take part. Guests will enjoy wine, beer, and a selection of signature drinks. More details will be available on AFTD's website soon.

 

FTD Conference in North Carolina: Alzheimer's North Carolina will host its 2nd Annual FTD Conferece on Wednesday, July 25, 2012 at the NC State University Campus - Raleigh. Click here for the Save the Date flyer with preliminary information.


Two New FTD Caregiver Support Groupshave recently been formed in Toronto, Canada and Burlington, NC. Follow these links to AFTD's map of the United States and Canada and click on your region to find clinical centers, support groups and FTD-related events in your area. Know of a resource that is not listed there? Please let us know, so we can share the information with others in your community.

Caregivers' Corner 

The Blank Stare: It Doesn't Always Mean What You Think It Does


Many people with FTD will gradually stop expressing emotions either verbally or through gestures or facial expressions. This symptom is technically called "blunted" or "flat" affect.  As a caregiver, you may be familiar with this symptom and recognize it as "the look."  It is often an emotionless blank stare, but can also be a scowl, a glare or some other idiosyncratic facial expression. It may also be the usual response you get to questions, instructions or whenever you talk to your loved one. It is easily interpreted as a lack of comprehension and responsiveness but can also be taken as a sign of frustration or anger. When language impairments are also involved and it is hard for your loved one to express his or her wants and needs, misreading "the look" and reacting accordingly can lead to more miscommunications and frustration for everyone.


Several things may contribute to the frequency of this in FTD. There may be an inability to read social cues and follow the expected etiquette. Perseveration or "getting stuck" on a word, issue or thought can result in a fixed facial expression or stare. The ability to understand language and respond with appropriate speech may be a contributing factor. Think of when you are asked to solve a difficult problem or you cannot understand what someone is asking you--no output is produced.


Understanding "the look" as a symptom is an important step in learning to react appropriately and maintaining clear communications with your loved one. Don't scowl back! Stay positive and maintain a friendly, calm approach. Use familiar terms and visual cues. Give the person time to respond and redirect the person to another activity to get them "unstuck!"

Medical Momentum

Dr. William Hu: Defing FTD Syndromes


At the recent AFTD Education Conference and Annual Meeting in Atlanta, clinical address speaker Dr. William Hu of Emory University tried to make sense of the many different syndromes with different symptoms that are encompassed by the term "frontotemporal degeneration." He used the analogy of a car--you have to know both the make and the model to fully describe a vehicle. In the case of FTD, although everyone with the diagnosis shares changes in the frontal and temporal lobes of the brain, the outward symptoms and the underlying pathology (the cellular changes in the brain that cause the symptoms) together provide the most complete diagnosis.

 

Dr. William Hu speaking at AFTD's Education Conference in Atlanta, April 2012

For example, a person with behavioral variant FTD (bvFTD) will ypically have the outward signs of difficulty with social interactions, decision making and impulse control (among others), but these symptoms may be due to different protein malfunctions in the brain. Because brain biopsies are very uncommon, the type of protein pathology that underlies a person's symptoms is often not known until after death. The autopsy report can lead to surprises--a person may have been diagnosed with bvFTD based on symptoms and brain imaging only to be re-categorized as having Alzheimer's disease (AD) after the pathology report comes back posthumously. Dr. Hu stressed that this doesn't mean that a person was "misdiagnosed" necessarily, but rather that the person's FTD symptoms were due to the same pathology that causes AD.


One question that you may ask is: "Why should we care about the underlying pathology if it doesn't change my loved one's care plan?" Although it's true that we do not have treatments available now that target the underlying pathology of FTD, clinical trials for these new types of drugs are underway, particularly to target changes in a protein called "tau," which is also altered in AD. That's why AFTD currently funds three investigators through its collaboration with the AD Drug Discovery Foundation to develop reliable ways to predict a person's underlying pathology by studying samples of cerebrospinal fluid or through advanced imaging techniques. These tools will eventually allow us to know both the "make" and "model" of a living person's FTD so that therapeutic interventions can be targeted correctly.

The AFTD-Team

Deanna Angello, a pharmaceutical business professional in New York City, became an AFTD-Team member this year. Near the end of February, Deanna set an ambitious goal: to raise awareness of FTD as well as $50,000 for care and a cure for FTD through a series of endurance events. And she was going to work--and work HARD--to make it happen. 

 

Deanna - Everest
Deanna Angello at Base Camp on
Mt. Everest - April 2012

In honor of her Dad, Michael Angello, who is affected with FTD, Deanna ran the NYC Marathon in March and trekked to Mt. Everest Base Camp (17,500 feet!) in April. But she's not finished: in July, she will participate in the NYC Triathlon and will run in the NYC Marathon in November. So far, her efforts have raised over $11,000. Here's what Deanna has to say about her AFTD-Team fundraising goal:


"When my father was first diagnosed with FTD, I had a difficult time processing and dealing with what was happening to him and what it meant for our family and future. It was so hard to talk about it, even as a family and with my closest friends, but eventually I gained strength and realized that I could turn something very negative into positive and honor my Dad in the process.  My mission became clear--channel my energy and grief into ensuring that everyone that I know or meet knows what FTD is, and ask for their financial support in raising funds for care and a cure. Through my efforts, I've realized by opening up and sharing my personal story that people genuinely want to support me in whatever way is possible for them.  People are interested in learning more about FTD, and in a short time, I know that I not only raised important dollars, but exponentially increased awareness of this horrific disease in my personal and professional communities.  A big win on both parts! 

 

"Join me in fighting this disease by committing to raise funds and awareness however you can--hosting a bake sale, participating in a walk or run, creating an online fundraiser through AFTD in honor of your birthday (or your loved one's birthday) in lieu of gifts--to get us closer to a cure. Every day counts...every dollar does a world of good.  Increasing awareness is key to achieving any fundraising goal. I'm honoring my dad in the best way possible, and making a meaningful difference that I hope will help many people.  This disease needs each and every one of us out there raising awareness and doing our part to fundraise so that effective treatments, and ultimately a cure, will be found."
 

More information on grassroots fundraising can be found on our website...simply click here.

Words of enCOURAGEment

From Bonnie Shepherd

 

You Are Not Alone

  

My message of encouragement is this: you are not alone, and you can walk thru this journey with dignity. Others have been on this journey before you, and they can help and guide you; others will be behind you, and you can help and guide them.


I vividly remember the day our family received my husband's diagnosis of frontotemporal degeneration--we were like "deer in the headlights."  We heard the words from the doctor: no cure, no research, no medications, 6-8 years to live. We felt varied emotions, fear, confusion, anxiety, hopelessness, anger, sadness...


As I look back at that time, I think my answer was to take action by gaining knowledge of dementia, understanding and identifying needed resources, becoming involved with a support group and accepting help and care.


I encourage you to take advantage of resources that are available in your community and seek out a support group.  If the first one does not meet your needs, try another or start your own support group with the help of AFTD.  In a support group, you can find other people who understand how you are feeling and what your struggles are.  Each person with FTD is unique and each caregiver is unique, but WE ARE NOT ALONE, and we can support each other as we move through this journey. 

 

If you have Words of enCOURAGEment that you would like to share in upcoming issues of The Gateway, please email them to [email protected] with "words of encouragement" in the subject line.

 

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