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New Volunteer Page on AFTD's Website!
The volunteer program has a new page on the AFTD website...
Learn about current volunteer opportunities,
read about some of our standout volunteers and locate our volunteer information form!
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Volunteer Program Logo Contest
Are you creative? Are you a graphic designer? Do you recognize the importance of volunteers and the impact they can make? If so, then why not put your skills and passion to the test and enter AFTD's Logo Contest. We are looking for an inventive logo that captures the essence of the volunteer program. To learn more, go to the contest page of AFTD's website. The deadline is July 1st.
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What's New |
University of Penn FTD Caregiver Conference: The University of Pennsylvania is hosting its Frontotemporal Degeneration Caregiver Conference on Friday, June 7, 2013. The conference is open to anyone with an interest in FTD and will cover topics including the genetics of FTD, drug development and caregiver resources. The keynote address will be given by AFTD's founder, Helen-Ann Comstock. For more information and to register to attend, please see the UPenn Conference Flyer.
AFTD Welcomes New Regional Coordinators: AFTD welcomes Lorene Schlie and Charlene Martin-Lillie as regional coordinator volunteers for the Midwest region. As ambassadors for AFTD and the principle coordinators of volunteer activities within the region, they bring experience and passion to support AFTD's mission. If you live in the Midwest and would like to learn more about AFTD's volunteer opportunities, please contact the coordinator overseeing your state.
Lorene: loreneschlie@comcast.net
(Indiana, Illinois, Ohio, Michigan, Wisconsin)
Charlene: cmartinlillie306@gmail.com
(North Dakota, South Dakota, Nebraska, Minnesota, Iowa)
New Support Groups: A new FTD support group has begun in Albany, NY. 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 via info@theaftd.org, so we can share the information with others in your community. |
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Caregivers' Corner | |
Reaching Out in Creative Ways
Lee Danis shared his letter to the Dallas Morning News Business Section on May 14, 2013. He tapped a creative way to reach men interested in support and raise awareness of FTD. The letter resulted in three new group members in the first few days it ran.
Dealing with dementia
Re: "As old as you think" by Pamela Yip, April 13 Business section
I loved today's article on feeling younger though aging. My wife was diagnosed with a rare form of dementia 3½ years ago. After about four months of depression, I started a support group for men whose wives have dementia. Your article quoted Sanford Alberts as saying: "When you serve others, you serve yourself, and you get back more than you give." The support group has been a great help to me, and I enjoy doing it.
The men in our support group learn more about caring for their wives than they could anywhere else. I remember a comment by one of the men at his first meeting: "This is the first time I have walked into a room and everyone knows what I am experiencing daily without my having to explain it to them." They are a special group of men who dearly love their wives, and they are trying to cope with something they never expected to face.
We meet the second Wednesday of each month in my home. The men brown bag it, and I provide the drinks. From time to time, we
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Lee Danis' support group |
have a speaker, but most of the time we just share anecdotal information about caring for our wives, including medicines, legal issues, doctors, various types of caregiving, cost of assisted care facilities and how to maintain our
own sanity.
Any man who is caring for a wife who has any form of dementia is welcome to attend and can reach me by email at leedanis@att.net.
We have eight to 10 men who attend regularly. About half of the wives have frontotemporal dementia, and the others have Alzheimer's. Our group is also listed on the AFTD website at www.theaftd.org.
Despite caring for our wives, we have discovered we also have to find a life for ourselves, and it makes us better caregivers.
Caregiving is a difficult calling, and most men handle it poorly; it has a steep learning curve.
--Lee Danis, Dallas
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Medical Momentum |
Setting National Priorities for FTD Research
In early May, AFTD co-sponsored a meeting hosted by the National Institutes of Health (NIH) to craft a plan that will guide national research efforts on non-Alzheimer's dementias (FTD, Lewy Body dementia and vascular dementia) over the next 12 years. Five AFTD board members, four staff and more than two dozen FTD experts were among those who developed the recommendations and were present to comment upon priorities for research.
A half-day was devoted exclusively to FTD, and the set of recommendations that emerged ranged from the need to educate physicians for better diagnosis, to identify specific holes in our current knowledge about the disease process, and to create the tools necessary for efficient and effective clinical trials.
Once the recommendations are finalized, they will be submitted to the Advisory Council of the National Alzheimer's Project, the mechanism through which funding requests will be made to Congress.
"With the creation of this agenda, our work is just beginning," noted AFTD Executive Director Susan Dickinson. "Given the current difficult funding environment, our role will be to advocate loud, long and with one voice for the funding to turn this plan into action." |
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The AFTD-Team | |
Food for Thought: Join the Movement!
In the last issue of the Gateway, we introduced Food for Thought, a grassroots fundraising and awareness-raising campaign designed to rally as many supporters of AFTD as possible during the first week of October across the U.S. and Canada. In this issue, we invite you to consider hosting a Food for Thought event. 
This campaign seeks to make a few more people aware of FTD while involving some food/drink and a little education. It can as simple as a bake/cider sale or dinner in one's home. Love wine? Consider hosting a wine and cheese party while talking to friends and guests about FTD. The idea is to have as many events as possible to raise awareness and garner some press coverage on FTD through major media outlets. Together, our voices will be heard!
Check out the Food for Thought page on AFTD's website, complete with a 13-page toolkit for your planning ease. If you would like to sign up to host an event, please fill out our online form to register your event with AFTD. We look forward to partnerting with you on this campaign!
More information on grassroots fundraising can be found on our website...simply click here. |
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Words of enCOURAGEment | |
Pick Your Battles
by Susan Eissler
I was in an MRI waiting room in San Francisco and noticed a couple across the way. I said to myself: "That man has FTD!" I couldn't tell by looking at the man, but I noticed by the way the wife was behaving. Her body language showed her to be "mother" rather than "spouse," even though they were the same age. She was alert, on duty: he was totally relaxed. I saw myself in her.
Gradually, we caregivers take charge. Part of the stress is that all our waking hours are spent guiding and protecting. But one of the many lessons I learned was to "pick my battles."
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Susan Eissler |
My husband Bill had a focus in life: to help others...to reach out and uplift people. His mantra was: "It's not a problem, it's an opportunity." His favorite activity, from the onset of FTD symptoms, was to hand out amusing and inspiring stories he had copied from the Internet or from the small magazine called Bits and Pieces. In itself, that was a good activity. But the aggravating part was that he handed these out EVERYWHERE we went to EVERYONE we met. In the beginning, I was embarrassed and sought to thwart him at every turn. At one point, we were going to a fancy cocktail party, and he wanted to carry his briefcase around so he would have plenty of copies! But gradually I backed off because I realized that this activity brought him much satisfaction and that no one was offended or embarrassed except me.
I learned to relax and let him "do his thing," unless it would have been disruptive. "Disruptive" was wanting to hand the priest a story as we entered church at the last minute and the procession was beginning down the aisle. "Disruptive" was walking the third time around a high school track and wanting to stop the SAME person again for an encouraging word. "Questionable" was handing the security agents at the airport a photo of a large very orange orangutan instead of a photo ID, when the sign clearly said "No jokes please!" (I was positively mellowing at this point.)
Every day, Bill went to the grocery store and every day he brought his latest story to present to Frank the butcher. It didn't matter if Frank was up to his elbows in fat and gristle, Bill would have gone right in through the employee only doors. But the staff knew his routine, so they would alert Frank that Bill had arrived. Frank would come out, patiently listen to the story and take the time to enjoy it with Bill. On Memorial Day, Frank gave Bill a card with a note that read: "Dear Bill--It's a rare privilege when two people with different backgrounds can find and enjoy similar passions. Thanks for your trivia. Good luck and God speed. --Frank"
Another time, we were in a restaurant for breakfast. The place was packed. The waitresses were stressed. Finally, a waitress came over to take our order. (I tensed up--busy waitress--Bill will want to share his story...) Bill handed her the story and explained that it was hers to keep. She thanked him and took our order. Later, while we were eating, she came out and threw her arms around him. She said she had been having the worst day ever and that he had made her day with his wonderful story.
We say that FTD takes away the humanity from a person in many ways. But Bill struggled to make the world a better place until the very end. I just had to learn to let go and pick my battles. In the end, that blessed us both.
If you have words of enCOURAGEment that you would like to share in an upcoming issue of the Gateway, please email them to amaher@theaftd.org. |
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