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

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Issue: # 19
December 2014
What's New

Become a Monthly Donor:

Keep the Momentum Going for Care and a Cure

(Elizabeth Daniels photography)  
Ryan Windhorst and his wife Stephanie and their two sons, Jackson and Maddox
"My mother was diagnosed with FTD in 2007, and as a result my family has been donating monthly to AFTD for several years.  It's a win-win situation: Easy for us and a source of predictable income for AFTD."
Ryan Windhorst


Become a Monthly Donor
Click the linkMonthly Giving


Your monthly donation will help establish a sustained source of income for AFTD.  Reoccurring donations allow AFTD to stimulate research and fund services for those affected by FTD.  It's the easiest way to give and to ensure that AFTD moves toward a world where FTD is understood, effectively diagnosed, treated, cured, and ultimately prevented. 

Your monthly donation will mean so much
to someone fighting this disease! 
Become a Sustainer of Hope today.
Caregivers' Corner 

Understanding Changes in Sexual Behavior


When a person develops FTD, especially behavioral variant FTD (bvFTD), the disease can cause changes in sexual behavior that are especially challenging for spouses/partners and other family members. FTD alters specific areas of the brain that may lead to three types of changes in sexual behavior: decreased sexual desire, disinhibited acts, and increased sexual desire. Loss of sexual interest seems to be most prevalent and impacts life at home. Disinhibited sexual behavior may include making suggestive statements or touching others in inappropriate ways. Hypersexual behaviors are seen in a minority of FTD cases where individuals seek an increase in sexual stimulation over pre-disease levels.


When apathy decreases sexual desire 
The person does not mean to hurt your feelings or discount the relationship you once shared. This is a symptom of the disease. The loss of physical and emotional intimacy may cause partners to feel angry and alone. These feelings are understandable, but may be difficult to express. It is often helpful to discuss these private issues with trusted friends, counselors, support groups, religious groups and health care providers.  


When disinhibited behaviors are present
These behaviors are not deliberate. The parts of the brain enabling self-control are damaged,which prevents the person from adjusting their actions to fit the setting. Identify and avoid possible triggers.  Disinhibited sexual remarks and actions generally occur in response to visual and environmental cues: e.g. touching a woman's breasts on the beach. Try to arrange a different activity for the person with FTD if a situation is a trigger and will cause embarrassment. Ask a friend, relative or paid caregiver to help so the main caregiver gets a break.  


For more suggestions on managing changes in sexual behavior read the Partners in FTD Care handouts What to Do About Sexual Behavior in the Home/Community and What to Do About Sexual Behaviors in Facility Care



AFTD Launches Facebook Group for Young Adults


AFTD has launched a new "secret" young adult Facebook group, specifically for people in their 20s and 30s who have a family member or friend with FTD. It is a gathering place to share information, ask questions and get support from peers. If you would like to join the group, please email and include your email address used to set up your Facebook account. After sending the email, you will be invited to join via Facebook.

Medical Momentum
We Need Your Help:

FDA Calls for Nominations for Diseases to
Spotlight in 2016-2017


Please respond by Friday, December 5th.


The FDA has issued a call for nominations of the diseases to be included in a series of public meetings they will sponsor in 2016-17, as required under the Prescription Drug User Fee Act (PDUFA). 

One factor that will determine which diseases are covered will be the number of emails and letters the FDA receives advocating for each disease.

We need YOUR help in ensuring that FTD is included. It's easy! Submit a letter with your name, city and state of residence, by copying and pasting the text from your word document, such as the AFTD sample letter, into the comments field on the webpage the FDA has set up for this purpose.

These public meetings are an opportunity for patients, caregivers and other stakeholders to tell the FDA about the impact of disease symptoms so that FDA reviewers may be better informed during the regulatory review process for new treatments and therapies.


Remember to indicate whether you are an FTD patient, caregiver, advocate, medical expert, etc. 


*Please note that the comments must contain the FDA docket number (FDA-2012-N-0967).

**Identify yourself as an "individual consumer" from the Category list at the above link when submitting comments.

The AFTD-Team

Campaign Invites Caregivers to Participate in FTD 'Kiss Off' 


FTD often takes away the affected person's ability to express the love they feel for those closest to them, but we know there are many stories of enduring and resilient love that exist throughout the FTD community. AFTD's With Love campaign seeks to tell those stories.

his year, AFTD is telling FTD to kiss-off! We invite any caregivers who create a fundraiser or make a donation to submit a picture of themselves and their loved one to our kiss-off slideshow. The slide show will be a show of force - the force of love - against FTD!


Click here to share your story and start your fundraiser, or contact Liz at for more information. 

Words of enCOURAGEment
Caregiver Shares 'Top 10 List' for Coming to Peace 
with Oneself in the Face of FTD

These comments are excerpted from Matthew Dineen's talk during the Caregiver Panel at the 9th International FTD Conference held in October in Vancouver, British Columbia, Canada.
  1. Be grateful that you have received a diagnosis of FTD. I am wholeheartedly convinced that there are many people who are living tumultuous lives, not knowing what is going on within their homes with their loved ones. In addition, and as many in this room can attest, there are often misdiagnosis along the way.
  2. Together with your family, make a conscious decision to embrace or to positively accept the diagnosis. This is not an automatic decision; it requires much introspection and strength. In short, be prepared to redefine your identity and attach new meaning and purpose to who you are and the person you will be for both your family and your loved one. And here, I can only say that educating oneself as much as possible in the world of FTD is absolutely essential.
  3. The diagnosis date is both a blessing and a curseTherefore, be sure to set your health priorities as follows:
    1. You as caregiver
    2. Your children
    3. Your spouse (and here I make the assumption they are getting some form of care as per the diagnosis)I used to think the correct order was children, spouse, then me. But I soon realized that if I'm not well, the house of cards crumble. In addition, be conscious of the fact that your loved one will show signs of anosognosia (lack of insight or awareness as to what is clinically going on as a result of the diagnosis).  In short, be prepared to practice "tough love" and adopt the mantra, "To do what is best for you and your family."
  4.  Perhaps the hardest lesson for me was the following - surround or immerse yourself in the realm of the positive. For me, this was a conscious decision made far into the journey. And it has paid dividends for my own mental health. As humans, we too often dwell and hold onto the negative in our lives. By focussing on the positive, we keep the main health player named above (i.e., the caregiver) in a sound state of mind.
  5.  Following on the heels of goal 4 is the 5th goal - learning to let go. By this I mean to forgive, to make peace, to be flexible and even expect the unexpected. It may even mean that we have to lower our expectations so that we won't be disappointed and thus turn negative. Here, I believe one has to foster an attitude of both humbleness and humility.  This also means saying yes to peoples' offer to help us out in our unique circumstances. Thus, "put pride aside." It may also mean learning to let go of priorities we once attached supreme importance to, things such as our jobs, household work, etc... Remember, our task is one of mere survival! Thus, learn to let things go that aren't essential to your overall well-being.
  6.  Be gentle with yourself. Be aware of pitfalls in your life that can and will take you down. Instead, turn the focus towards getting proper rest, improving your diet, more exercise, and even reading a book or two. Carrying the stress of being caregiver, parent and breadwinner never leaves enough time for self. Remember, if you're not well, the house of cards fall. Seeking professional help by way of a psychologist or support group (both for self and family members) can be of great assistance when trying to stay the course along this difficult journey.
  7. Following on the last step, we need to remind ourselves that we are human, not superheroes. Experiencing a wide range of emotions, both good and bad, is perfectly normal. I know there have been too many times (especially on account of a lack of sleep) where I have not acted in a manner I should have towards both Lisa and my children. Again, the practice of humility can go a long way when we are open and honest in our relationships. Being able to talk about our difficulties surrounding the disease is imperative if we are going to embrace it in its fullest sense.  This includes allowing ourselves to have moments of weakness. As an example - pilgrimage (older couples holding hands).
  8. Get in touch with your spiritual side, whatever form this may take. Let it guide you and strengthen you for the journey which lays ahead. For me, it has been my Roman Catholic faith. From it, I have come to "slowly" learn the meaning and value of redemptive suffering.
  9. Advocacy as a way of coping - as a family, consciously decide how you will "put on the boxing gloves" and face FTD head-on. Things like entering a team in the Alzheimer Society's annual "Walk for Memories" fundraiser or launching a "Food for Thought event" in your own community can quickly make a glass which appears half empty, half full.
  10. Finally, permit yourself to look into the future. By this I mean a time, down the road, where life will afford us a chance to see its fullness, where we won't be caught up in the daily world and struggles of FTD. Moments like these can offer us that renewed sense of hope that is so often lacking amidst the turbulent waters of a loved one's FTD diagnosis. They are also gentle reminders that we are called to act tenderly and love greatly those who are dearest to us in the here and now.

In summary, there are no easy solutions or textbook answers for how to navigate the immensely difficult world of FTD. However, what we do know is that we can make choices. By choosing to accept, even embrace, an FTD diagnosis, we will be showing the world that caregiving need not be viewed as a burden, but rather a journey borne out of love. And, within that journey, we ourselves might even come to find a deep sense of peace. 

These comments are excerpted from 
Finding Peace Amongst the Turmoil and Strife of an FTD Diagnosis - The lesson of Acceptance OR The Journey Forward, Not Downward, title of the talk caregiver Matthew Dineen gave as part of the Caregiver Panel at the 9th International Conference on FTD, held in October in Vancouver, British Columbia, Canada. To link to presentation decks from the Caregiver Program and comments from the Caregiver Panel, click here.


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