LONG ISLAND ALZHEIMER’S FOUNDATION
Putting up a fight Alzheimer’s patients unite to battle for their minds Video Interactive: Exercise your brain Story on page 4
Andrew Sturgill / msnbc.com
LIAF Early Stage Programs Nationally Recognized
FALL 2007 NEWSLETTER
Hello Friends! LESLIE GONZALEZ EDITOR & GRAPHIC DESIGN LIAFline is the newsletter of the Long Island Alzheimer’s Foundation, Inc. (LIAF) and is supported entirely by contributions. © 2007 Long Island Alzheimer’s Foundation, Inc. Articles, news items, correspondence or other materials of interest are welcomed for publication consideration. Material in LIAFline may be reproduced with permission and proper reference to source. Any statements of fact and opinion are the responsibility of the authors herein and do not imply an opinion or endorsement on the part of LIAF.
5 Channel Drive Port Washington, NY 11050 516.767.6856 Toll Free: 866.789.LIAF Fax: 516.767.6864 www.liaf.org email: info@liaf.org Executive Director: Patricia M. Gallatin Board of Trustees: Linda Cronin* Barbara Donno Bonnie Doran Madelyn Dubiner Paul Eibeler Sydney Jacoff Thomas J. Killeen, Esq.* Thomas B. McGeary Albert J. Meyer Catherine Nelkin Miller Edmund T. Pratt, Jr.** Michael Puntillo, Jr. Paul J. Salerno, CPA* Josephine Schiff** Peter Scotese Janet B. Walsh* Stephen Walsh
You will note that LIAFline has a new look with this issue, kicking off the celebration of our 20th Anniversary this fall. Coincident with our 20th, we are reinventing our newsletter, our web site, and much more. You will also see our 20th Anniversary emblem and tag line “Lighting the Way, Lightening the Burden” debut with this newsletter. To commence our 20th Anniversary observance, our Founder, Janet B. Walsh, this month details the reasons she and four other women caregivers created LIAF 20 years ago. With each issue, we will contribute articles and photographs to commemorate LIAF’s history of service. Also new in this issue are our “Ask LIAF” and “Caregiver’s Circle” sections. LIAFline will continue to provide the latest news in the treatment of Alzheimer’s disease and how our programs serve clients and caregivers. We hope you like the new LIAFline format and welcome your thoughts and feedback. In addition to planning for our 20th Anniversary, LIAF continued to host its summer events and plan for the Fall and Winter months. June saw another very successful Golf Classic, honoring Tom, Kevin and Bob Murphy, whose father had Alzheimer’s disease. Also in June, LIAF hosted its 4th Annual Regatta to Remember, at Manhasset Bay Yacht Club, for junior sailors aged 9-17 years old. Over 40 sailors participated, and Patty Hoban deserves special thanks for raising over $1,600 for LIAF! In August, LIAF and Janet Walsh were honored at a fundraiser by the N.Y. Liberty Women’s Basketball Team at Madison Square Garden, and LIAF hosted its 3rd Annual Summer BBQ for our clients and caregivers. Hot dogs and hamburgers were roasted on the grill by volunteers, and our LIAF family brought salads, side dishes, and desserts, with our friends from Eisai Inc. again volunteering as staff for this event. A good time was had by all! In a new venture, LIAF clients and caregivers are recording their stories with StoryCorps®, who will house these recordings at the Library of Congress in Washington D.C. as well as provide copies to our families, preserving their special memories for generations to come. In the Fall, as a highlight of our 20th Anniversary activities, we will partner with Cold Spring Harbor Laboratory and Eisai Inc. to host a free lecture at the Lab’s Grace Auditorium, “Understanding Alzheimer’s Disease,” given by Dr. Roberto Malinow, Professor of Neuroscience. In November, we will commemorate National Alzheimer’s Disease Awareness Month by hosting our Remembrance Ball, this year honoring LIAF Trustee Peter Scotese, and hold our Candlelighting, in honor and in memory of our loved ones. Stay tuned for more 20th Anniversary festivities as we move through the balance of 2007 and into 2008. Best regards,
*Officers **In Memoriam
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Pattie Gallatin
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LIAF Turns 20
Beginnings... by Janet B. Walsh Founder and Chairman Emeritus, LIAF
I have been involved with raising aware-
ness for Alzheimer’s disease since 1985. It’s not that I chose to be an advocate -- I really had no choice. Twenty-two years ago very few people had as much experience with Alzheimer’s as I did, that were in a position to “get the word out.” My grandparents came to live with us when I was 5 years old. Soon afterward, it became apparent that Sarah (my grandmother) wasn’t herself. Back then we referred to this type of dementia as “senility.” In my neighborhood of Queens, it seemed like everyone at one time had a grandparent who had lost their memory. My grandmother was cared for by my parents and sisters, and not one of us thought this was an unrealistic task until she became bedridden. I did what I could to help, and increased my reading skills as I sat by grandma’s hospital bed -- which now occupied our small dining room. I think it was the love I experienced for my grandmother that endeared me to the elderly. Uncles and aunts would come to visit her; after all, Sarah raised nine children while working as a superintendent of the brownstone where they lived in Yorkville, Manhattan. The stories about “Mum” were enthralling. My Parents, 1975
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Sarah passed away in our home in 1967. I was Daddy’s little girl. He was my hero. He would take our family on these massive road trips to Florida, California, Canada and even Mexico. He loved the outdoors and was an avid sportsman. After four girls, I was his last hope to be a fishing and hunting companion. I pretended to like fishing but really enjoyed sorting out his lures in the fishing box. Most of all, just being with him was fun and always educational. Hunting is just not my thing. In 1970, at age 58, my Dad started to change. I was 14 years old. At first, I feared my parents were headed for a divorce, as the arguments increased. Then, he lost his job. No physician would give us a name for what was happening to my father, and his business union wouldn’t give him disability without a diagnosis. We lost everything. Our house became a prison, as we tried to keep my father safe at home. The road to diagnosis took four years, and ended with my Dad’s placement in the psychiatric unit of Northport Veterans Hospital, where he remained for seven years. My Dad’s final diagnosis, at age 62, was “Alzheimer’s disease, a rare brain disorder.” I remember running home from the doctor’s office to look up this strange name in my encyclopedia, and finding a short paragraph describing Alzheimer’s as a “disease of the young.” It wasn’t until the late 1970’s that senile dementia was discovered to be an actual disease -- not a product of aging -- and the same thing as Alzheimer’s. My father died on February 22, 1981, but I had really lost him 12 years earlier. It was four years after my Dad’s death that I decided I needed to do something about what my family and I had lived through. I wanted to make a difference for other families caught in the maze of this illness. My first steps took
Janet Walsh me to the Alzheimer’s Association and Stony Brook University, where I realized that there were people raising money for research. But I noticed how the families continued to struggle alone. During my search to find a way to help others, I met four outstanding women -- all of whom had a parent or grandparent with Alzheimer’s disease. We shared our stories and raised awareness of these research projects, but still needed in some way to reach the families. The Long Island Alzheimer’s Foundation was created in January, 1988 to help “lighten the burden.” This year, as LIAF embarks on its 20th year of fine service, I want to say thank you to my fellow Founders: Felicia Pasculli, Susan Raven, Brenda Crom and Phyllis Corio. (continued on page 8)
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News
LIAF Gets National Attention Long Island Alzheimer’s Foundation
licensed social worker Alana Rosenstein didn’t know what to expect when she picked up a phone call from MSNBC. com, one of the most prestigious news organizations online. But on May 25, 2007, photojournalist Andrew Sturgill and MSNBC.com freelance writer Linda Carroll visited LIAF headquarters in Port Washington to report on its participants in early stage programs. The two journalists profiled clients Phyllis Blais, 79, and Gertrude Rothenberg, 84, as well as LIAF’s “Al’z Club” mental stimulation program, in an article and an accompanying video package told solely by the voices of Phyllis and her daughter, caregiver Susan Cuoccio. “What I like most is that I’m very comfortable at LIAF. There’s no one that isn’t like me. They’re all in the same boat, and we all have the same feelings about it,” Phyllis told MSNBC.com. “I’m not completely gone. I’m gonna fight it and make sure I don’t get that bad.” “I’m doing whatever I can do, medication-wise, doctor-wise, healthwise,” Gertrude said. “I walk because I know it’s good for you. I do my exercises in the morning. I try to stay fit.” Staying mentally fit is just what Alana Rosenstein LMSW, Director of Early Stage Programs at LIAF, intends when she creates brainteasers such as “Buster ____ and ____ v. the Board of Education” and asks how many words can be made from the letters in “conglomerate.” Susan told MSNBC.com how much her mother enjoys Al’z Club. She
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Andrew Sturgill / msnbc.com
described how Phyllis brings home word puzzles and remembers particularly engaging speakers. “On the days that she goes there, she is much more relaxed. She is happier; she has her companionship,” Susan said. “That gives her an outlet two days a week where I know she’s happy. She’s taken care of. She’s got something to look forward to. I’ll ask her about it to see how much she retains. I’m often surprised. She remembers a lot.” The article, streaming video and interactive features were the lead story on MSNBC.com on Thursday, July 26,
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2007, reaching more people than any of the national daily newspapers. To view the full article, video and accompanying material, please visit the MSNBC website or click the direct link at http://www. msnbc.msn.com/id/19920330/. On the cover: LIAF clients Phyllis Blais, seated left, and Margaret Matthews, seated right, participate in a mental stimulation activity lead by Alana Rosenstein LMSW. Above, Phyllis is pictured with client Anthony Pasquale. Images reprinted with
permission.
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Services Spotlight g
From Isolation to Community by Alana Rosenstein, LMSW
When LIAF licensed social worker
Lori Goodcuff first visited the Forest Hills home of Bob and Marjorie S. in autumn 2005, she found two childhood sweethearts married for nearly 70 years. Their affection was clear, even as Marge’s advancing dementia had stripped away much of her memory and abilities. Lori was there to make an intake assessment for the LIAF Alzheimer’s Companions in-home respite program. It was clear she would need to build a relationship of mutual trust if she was to enter the couple’s world and assist them on their challenging journey with Marge’s Alzheimer’s disease. At the time, Bob was overtaxed by the 24/7 challenges of being Marge’s sole caregiver. He desperately needed assistance, but felt unable to leave Marge with another person. Marge, in turn, would become extremely agitated when Bob left her sight. She would not let a doctor examine her, and resisted any assistance with daily hygiene. For nearly three hours, Lori learned about the couple behind the disease. Bob recounted the couple’s romance, as Marge held his hand and showered him with kisses. By the end of Lori’s consultation, Bob and Marge were comfortable enough to agree with her recommendation for bi-monthly visits from Fran Griah, LIAF Respite Companion. During her first few visits, Fran established a trusting relationship with Bob and Marge. Initially, Bob was always present, but within several months Marge grew comfortable enough to stay with Fran alone. This granted Bob the freedom to schedule his own medical care and errands, knowing Marge was safe, well-supervised, and involved in stimulating activities that engaged her remaining abilities. Lori and Fran persuaded Bob and Marge to come visit LIAF headquarters in Port Washington.
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Respite Companion Fran Griah at the home of Bob and Marge S., with Lori Goodcuff, LMSW, LIAF social worker.
“The first day I walked in, I was shaking. I asked myself, ‘What am I doing here?’” Bob said, recalling his nervousness. Marge was introduced to participants in The Memory Lane Club, a social model adult day program designed to maintain cognitive levels and physical functioning, and Bob was encouraged to join a weekly caregiver support group. “I was reluctant at first. It’s hard to pour your heart out to strangers,” he said. “But after a while they’re not strangers anymore. You listen and it’s like, ‘My God, that’s the same thing that’s happening to me.’ Each one of them is a mirror of me.” At first, Marge repeatedly asked for Bob and needed constant reassurance from program staff, but slowly she familiarized with the welcome setting, Director of Day Programs Stephanie DePalma and the caring staff. Marge’s participation was increased from one hour to four hours, while Bob built relationships with other caregivers and LIAF staff. Barbara Vogel, LIAF Director of Social Work, encouraged Bob to bring Marge to Dr. Gisele Wolf-Klein of the North Shore-LIJ Health System. A member of the LIAF Medical Advisory Board, Dr. Wolf-Klein addressed Marge’s untreated medical conditions. LIAF
staff introduced Bob to Paul Rosen, Director of Community Relations at Harbor House of Oyster Bay, who arranged a respite stay for Marge so that Bob could travel to visit family. Now comfortable with this option, due to Marge’s success separating from Bob at the Memory Lane Club, Bob was given this much-needed break. Marge again stayed at Harbor House for several days in June 2007, which allowed Bob to welcome his newborn great-grandson. “The Memory Lane Club keeps Marge occupied with people on her same level. I don’t see how they can improve on it, because it’s just wonderful the way it is. And the release I get in bringing her here -- I can go shopping and run errands. These things are difficult being the only caregiver at home. So it’s been very helpful… nice, warm, accepting and receptive, like a second home.” For more information about Alzheimer’s Companions, The Memory Lane Club, caregiver support groups, other LIAF services and how you can help, please call 1-866-789-LIAF.
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Your Financial Health
Who Is Giving and Who is Receiving? by Jeff Steele
With a well-planned charitable gift, sometimes it’s hard to tell who benefits more the donor or the charity
Would you like to have more spend-
able income, avoid all capital gains taxes on your investments, reduce your income tax bill, provide for a loved one’s special health or education needs, generate income from idle assets, put more away for retirement than your pension plan allows, protect a family business from burdensome estate taxes, or substantially increase your children’s inheritance? All this is possible, under federal laws that Congress has passed in order to encourage charitable giving. Since the demise of traditional tax shelters in 1986, tax experts have increasingly turned to so-called “planned giving” strategies to solve everyday economic problems for their clients. Here are a few recent examples: ♦ A young neurologist whose retirement income projections were drastically reduced as a result of tax law changes, established a charitable trust to supplement his regular pension plan, and restore his anticipated retirement income to the level he desired. ♦ A semi-retired couple who had intended to leave their home to charity in their will arranged a charitable transfer that enables them to remain in the house for life, while receiving substantial immediate income tax write-offs. The reduction in their current taxes gives them enough extra spendable
cash that they’ve already taken a Caribbean cruise and are planning twice-yearly visits to their grandchildren in California. ♦ A divorced firefighter with substantial capital gains in an investment portfolio that generated only $16,000 in annual dividends used a charitable trust to sell and reinvest the shares. He avoided all capital gains tax, and increased his annual income by almost $90,000, enabling him to pay his daughter’s college tuition and keep his support payments up to date without a second job. ♦ A 91-year old widow learned about charitable gift annuities at age 86, and hasn’t purchased a Certificate of Deposit since then. She now invests in gift annuities, earns considerably more income than the bank will pay her – two-thirds of it tax-free – receives substantial tax deductions, and is delighted to be supporting a worthy cause at the same time. ♦ A gay attorney with a small home, pension plan, and some savings and investments used a life insurance policy held within a charitable trust in order to provide financial security for his life partner of 28 years, upon his death. Being ineligible for the unlimited marital deduction, he was concerned that taxes would erode the value of his estate, and drastically im-
Caring Begins Young
pact his partner’s standard of living. ♦ A shop owner whose neighborhood business has grown in value over the years has been making very generous annual donations. By restructuring his gifts to reduce future estate tax liabilities rather than to obtain a current income tax deduction, his accountant projects savings of several million dollars when the business eventually passes to his children. As you can see, tax-planned charitable giving isn’t just for the rich and famous. It’s being used to solve everyday problems for ordinary people, and it’s one of the many services available, without obligation, at the Long Island Alzheimer’s Foundation. If LIAF’s service to Alzheimer’s patients, their caregivers and their families is something you might like to support with a tax-wise gift, please call or stop by the Development Office for a confidential conversation. We can provide you – and your professional advisors – with valuable information and resources. You may be surprised to learn how a well-planned charitable gift can often increase a family’s financial security. For confidential information about tax-wise charitable gifts, call Jeff Steele, Senior Vice President of Development, at 516.767.6856 ext. 28, or e-mail jsteele@liaf.org.
► The 4th Annual “Regatta to Remember” was held June 30 at the Manhasset Bay Yacht Club in Port Washington. About 40 young sailors raised more than $7,000 for LIAF programs and services, with lots of fun raffle prizes generously donated by Manhasset and Port Washington businesses. Patricia Hoban of Port Washington, who raised over $1,600 in sponsorships, won top prize -- a Nintendo Wii Gaming System.
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? ? Question: “I suspect that someone I care about Ask LIAF
may have a problem, but that person refuses to be taken to a doctor. What can I do?” Answer: There are many reasons sition and dig in their heels further. A gentle
why a person who is showing signs of dementia may resist going to the doctor, so it is difficult to give an informed answer without knowing the particulars. The appropriate response will vary based on a whole host of factors, including the degree of cognitive impairment, whether the person is aware of any changes in his or her functional abilities, and his or her past experiences with and attitudes towards the medical profession. That being said, here are some general rules of thumb to guide your efforts: ■ Avoid language or tone that may make the person feel criticized or attacked. When people feel that they are being criticized or attacked, it is common to become defensive. We want to avoid inadvertently encouraging the person to defend their po-
expression of concern may go a lot farther than a laundry list of missteps that reads like a ten-count indictment. ■ Beware of giving too much advanced notice of an upcoming medical appointment. The person may obsess about the appointment weeks in advance, allowing anxiety and resistance to mount. ■ Normalize the experience as much as possible. Consider telling the person that you have scheduled annual physicals for the entire family, and have arranged a check-up for them as well. They may be more likely to respond positively if they don’t feel singled out. ■ Don’t Give Up! There are many conditions (some reversible) that can cause cognitive impairment. Proper medical evaluation is necessary to determine what is causing the symptoms, and how best to
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treat it. A proper diagnosis involves ruling out a host of possible causes, some of which can be reversed if treated in a timely fashion. These include thyroid imbalance, vitamin deficiency, brain tumor, and hydrocephalus, among others. Even if the diagnosis ends up being Alzheimer’s disease or another progressive dementia, medication may help slow the progression and social services can help ease the burden of your family’s journey with the disease. ■ Talk to a LIAF social worker or other dementia care professional for guidance about your particular situation. You will have the best chance of being successful if you personalize your approach to the individual’s personality, history, and level of cognitive impairment. A LIAF social worker can help you talk through your situation and tailor your approach to your family’s dynamics.
Got a question for LIAF? Call 516-767-6856, email info@liaf.org or write to us.
Caregiver’s Circle by Leslie Gonzalez Emergency planning includes making double copies of identification, medical and contact information – one for you and one for a caring individual outside the area. Make sure your loved one is wearing medical ID jewelry. Carry a photo of the person with dementia in case he or she gets lost. Keep important documents in a waterproof, portable container that you can easily take with you. Develop a disaster plan. Do not depend on one person for help. Establish a network with family or caring individuals who can check on you. Make sure they know your emergency meeting spots, and designate one set of your important keys. Also designate someone out-of-state to touch base with. If you have in-home help, include them in your plan and familiarize yourself with their agency’s emergency policies. Assemble an emergency supply kit of first aid, a flashlight, batteries, crank radio, nonperishable food, a manual can opener, a whistle, and iodine tablets should you need to purify water. Include health, doctor and
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Emergency Preparedness pharmacy information, and serial numbers with instructions for any medical devices. Have a “Go bag” of toiletries, two changes of comfortable, protective clothing; several changes of underwear, raingear, a travel pillow, mylar blanket, bottled water, energy bars, meal shakes, snacks and your medication. Include a list of medications taken, why they are taken, and their dosages; a pen and paper, a small regional map and contact info for your emergency network. Weather emergencies can keep people homebound or without power. If a storm is headed your way, plan to be self-sufficient for several days without help or emergency services. Have plenty of medication, food, water (2 gallons per person) and supplies on hand. Alert your local fire department in advance if someone is bedridden or dependent on life-sustaining equipment. In winter emergencies, do not use the stove to heat your home. This can cause fire or a gas leak. Never run a generator inside your home. If an emergency happens, remain calm.
Do not call 911 regarding power outages unless you see a life-threatening situation. Stay tuned to your local emergency station and follow the advice of trained professionals. If you are home, stay home unless told to evacuate or you are in immediate danger. Be prepared to evacuate. Create an escape plan, and practice different circumstances to identify complications. Determine in advance if you need assistance, how you will get to your safe location and have alternate transportation plans ready. If you must leave home, tell someone where you are going. A shelter is a last resort for the dementia client. Call ahead to emergency managers so that you will be directed to a special needs shelter. Any change of routine for the dementia client can be upsetting. Make him or her feel as comfortable as possible: Use pillows, blankets, snacks, and bring something familiar and calming. Games or activities can keep your loved one occupied and distracted.
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LIAF Turns 20
LIAF’s Five Founders: Susan Raven, Felicia Pasculli, Janet Walsh, Phyllis Corio and Brenda Johnson.
Over the last two decades, LIAF has surpassed all of my dreams and desires to become the organization it is today. I am a very, very proud parent. Other than my most important job as Mom to Sarah and Andrew, LIAF is my greatest achievement. I have met the most wonderful individuals through my work. UnfortuJanet with children Sarah and Andrew
nately, many have passed on, and others can no longer remember my name. I could fill a book with what I’ve learned at LIAF and the stories would curl your toes. Some are happy, some really sad, and others quite scary. We have so much more work to do. At first, LIAF was formed to raise awareness and money for community-based programs to help those diagnosed and their families. It soon became apparent to our newly-formed Board of Trustees that there were very few programs for people with Alzheimer’s. The ones that did exist were combined with elderly people with other difficulties,
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aptly named “frail elderly.” I was learning quickly, and realized these programs needed to be more than just a baby-sitting situation. Caregivers need people to lean on. The birth of LIAF’s groups was painful for me -- I am a “fix it” person, and recognized the need for a professional to lead these groups. And so, I fired myself as support group leader. With the support of the Brookdale Center on Aging, I helped found the Memory Lane Club (MLC), our day services program. It was the only way caregivers could have time away to attend support groups. Linda Cronin and I were the first volunteers to run MLC. Boy, did we learn a lot. My MLC stories are precious. Then, our clients seemed to be getting younger, with a need for more stimulation, so Al’z Club was formed. I am exhausted just reliving
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what we did back then to make LIAF the resource it is today. Conferences, International Research Symposia, trips to Albany and Washington, and sharing what we were doing on Long Island with people in Alabama, California, Georgia, Florida, etc. A most worthwhile project was our “Alzheimer’s Disease Directory of Services,” which has been released semi-annually since 1996. In 1993, a trilogy of videos titled “Living with Alzheimer’s” was produced to help educate families. I raised the $140,000 needed to do this project, and yes, there are some stories there also (including a Bartender’s Ball and a former Ziegfeld Folly). I wrote the script, conducted the interviews and helped edit this series. In the end, we received a Telly Award, one of the most prestigious honors in video and film production. This
Early LIAF on News 12
Pictured are Carol Silva, Janet Walsh and John McWeeney, Trustee.
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The First LIAF Board
Pictured in front row are: Janet Walsh, Norma Brown Hill, Susan Raven, Phyllis Corio and Vivian Lemelman. In back row are: Joseph Schramm, Brenda Johnson, Felicia Pasculli and Roberta Kuehl.
video trilogy is still in use today. In 1996, I participated in the Human Genome Project, and was tested for the ApoE gene for Alzheimer’s disease. Noel Schwerin, a noted Nova documentary producer, followed me through the testing process, and the result was 28 minutes of a documentary called “A Question of Genes: Inherited Risk,” which aired on PBS. Test results found that I had inherited the risk gene, ApoE 4, from both my mother and father. Statistics vary, but, in essence, I have a very great risk of getting Alzheimer’s disease. Not one to sit back and take this news lying down, I enrolled in a research project at New York University in 1996. Every other year, I have an MRI, a PET scan, spinal tap, three days of cognitive
testing, and a physical and mental examination. I still participate, and now my children do also. I have had the privilege of lecturing on Alzheimer’s, memory loss and prevention throughout the U.S. I was also able to present in Denmark, as a guest of Pfizer, to representatives from 18 countries around the world. Personally, I take warding off Alzheimer’s as a primary project in my life. I exercise, eat right, laugh out loud, surround myself with good, kind people and work hard to keep my brain stimulated with puzzles, exercises and just plain life. Today, I remain active as a Trustee, donor and advisor to LIAF. Not a day goes by that I do not communicate with the office, a family caregiver, a person diagnosed, or my fellow Trustees. LIAF will always be my baby.
“I would like to say Thank You to LIAF for helping me through the journey that was Alzheimer’s.” - Patricia Judge, LIAF Caregiver’s Council “Congratulations to LIAF for 20 years of amazing caring and support. You have created a family for us -your clients and caregivers. Each day LIAF helps us to face daunting challenges and nourishes our strength to battle the darkness.” - Matthew Dubiner, Chair, LIAF Client’s Council “I’m a pioneer, one of the first to enter my wife into the LIAF caregiver’s class. I remember being lectured by an attractive instructor -- none other than my pal Janet Walsh. She had a pair of Levi’s on...” - Anthony Lampasona, LIAF Caregiver’s Council “LIAF helped us create friendships, kinships, and gives us a forum for our voice to be heard. How fortunate we are to be able to share, care and ‘laugh’ with each other.” - Madelyn Dubiner, Chair, LIAF Caregiver’s Council “Laughter is among the many benefits to mind and spirit available at LIAF. Laughter with new friends -- it softens the sting of the friends who fade away from fear that dementia is contagious.” - Leslie Burke, LIAF Caregiver’s Council
LIAF family at Holiday Time
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Doctor’s Discussion
Frontotemporal
The Forgotten Dementia
by Caregiver Lucy Pontrelli, MD
Today, the signs and symptoms of de-
mentia are well recognized by the medical community and the general public. The past two decades have witnessed an explosion in scientific data in the area of the most common cause of dementia, Alzheimer’s disease. This has led to a better understanding of the disease, development of therapeutic agents and improvement of the diagnostic criteria, as well as overall resources. Despite being a Pediatrician, I too was aware of these developments in the area of dementia, since they were constantly reported in the medical literature and the media. I am also familiar with the second most common type of dementia, Lewy Body Dementia. Recently, I learned that there is actually a third most common type of dementia, which is actually not a single disease, but a group of illnesses referred to as “Frontotemporal Dementias,” or FTDs. About three years ago, my then 63-year old mother was undergoing a work up for what appeared to be an isolated speech disturbance. Much to my surprise, two years and five neurologists later, my mother was diagnosed with this rare form of dementia. In medicine, most patients and their families experience a sense of relief in finally attaining the diagnosis of prolonged and complex symptoms. This was not the case for my family. Understanding and managing this illness remains, to this day, a far greater challenge. Being a physician, I naturally turned to medical literature, since it always served me well in my professional career. I was disappointed to discover limited information, both confusing and conflicting. I learned that this “dementia” was actually a diverse group of neurodegenerative diseases, some of which were associated with more familiar diseases such as Amyo-
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► Bill Atkins is a LIAF client diagnosed with a frontotemporal dementia. Bill is pictured with his wife, Maxine Atkins, who attends a caregiver support group.
trophic Lateral Sclerosis (ALS) and even Parkinson’s disease. The clinical and diagnostic criteria remain controversial, and there is no treatment or available resources. I had discussions with many of my physician acquaintances, and soon realized that I was not alone in my ignorance regarding this disease. I assumed that FTD must be a newly-described disease. But, as I continued searching medical literature, I discovered that FTD was not a new disease, but an old one long forgotten. In fact, most physicians likely learned about it in medical school, when it was referred to as “Pick’s disease,” first described in 1892, prior to the discovery of Alzheimer’s disease. Unlike more familiar types of dementia, frontotemporal dementia is not initially associated with memory loss. In fact, the symptoms are quite variable, depending upon the type of FTD as well as the specific regions of the frontal and temporal lobes most affected in the brain. My family and I are confronted with a wide range of problems with my mother on a daily basis, including problems with communication due to a significant speech and language disturbance, numerous difficult behavioral issues, such as obsessive and compulsive tendencies and impulsivity, and even gait abnormalities that have lead to several significant falls over the years. Ironically, the ability to recall information -- the hallmark feature, as well as the major deficit of most forms of dementia -- actually remains
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one of my mother’s strengths and is not a daily problem for my family. We quickly discovered that the numerous dementia caregiver guides and resource information were not applicable to our situation, and we continue to create our own strategies by trial and error. My mother requires speech and physical therapy. However, there are no protocols suited to her needs. Researchers at the University of Pennsylvania School of Medicine recently identified the major disease protein responsible for the subtype of frontotemporal dementia associated with Amyotrophic Lateral Sclerosis (ALS). This finding was published in the October 2006 issue of the prestigious scientific journal, Science. This new discovery has generated increased research interest in FTD, which may provide insight into the underlying mechanism of this disease and possibly lead to the development of therapies in the near future. Now is the time to remember the forgotten dementia -- frontotemporal dementia -- since it is the second most common cause of early onset dementia, the first, of course, being early onset Alzheimer’s disease. Both affect individuals in the prime of their lives. Lucy Pontrelli, MD is the Assistant Director of Pediatrics and the Director, Division of Pediatric Infectious Disease at Maimonides Infant and Children’s Hospital of Brooklyn.
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Events
Long Island Alzheimer’s Foundation 20th Annual
Remembrance Ball Honoring Peter G. Scotese Retired Chairman, Springs Industries, Inc. Fashion Institute of Technology and Board of Managers, Girard College
Saturday, November 17, 2007 at The Garden City Hotel Cocktail Hour at 7:00 PM Dinner and Dancing in the Grand Ballroom at 8:00 PM Reservation Form
Yes, I wish to place a Journal ad.
Please indicate your level of support
□ Yes, I wish to attend the Ball. □ Please reserve _____ seats at $600 per person. □ Please reserve _____ tables of 10 at $6000 per table. □ I am unable to attend, but please accept my donation of $ __________ Name _____________________________________________________ Company __________________________________________________ Address ___________________________________________________ __________________________________________________________ City/State/Zip _______________________________________________ Phone _____________________________________ □ Home □ Office Fax ______________________________________________________ Total Amount Enclosed $ _______________ Enclosed is my check for $ _______________ Charge my:
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Card # ____________________________________________________ Exp. Date _________________________________________________ Signature __________________________________________________ Please mail completed form and ad, along with payment, to: LIAF, 5 Channel Drive, Port Washington, NY 11050. Checks should be made payable to: L.I. Alzheimer’s Foundation.
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□ Front or back inside cover (subject to availability). (7 3/16” W x 9 1/2” H .......................................................... $ 10,000 □ Gold Page (7 3/16” W x 9 1/2“ H) ..................................... $ 3,000 □ Silver Page (7 3/16” W x 9 1/2“ H) ................................... $ 2,000 □ Full Page (7 3/16” W x 9 1/2“ H) ...................................... $ 1,500 □ Half Page (7 3/16” W x 4 3/4“ H) ......................................... $ 750 □ Quarter Page (3 5/8” W x 4 3/4“ H) ..................................... $ 400 □ Supporter Recognition ........................................................ $ 150 Journal ad instructions: □ Please reuse or update last year’s ad if possible; enclosed is the ad with the revisions. □ Enclosed is the text for my ad; please design the copy for me. (I have included a company logo if needed). □ Enclosed is my camera ready ad (perfect copy, ready for print). Camera ready ads must be submitted as velox film, a clean computer printout, on disk, or sent via email. Please attach your camera ready ad. All artwork must be 300 dpi. NO BORDERS PLEASE. Journal had predesigned borders. All ads must be received by Wednesday, October 31, 2007.
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Notables ▼ On August 19, the New York Liberty Women’s Basketball Team recognized the 20th Anniversary of the Long Island Alzheimer’s Foundation and its founder, Janet B. Walsh, at Madison Square Garden. A portion of the proceeds from the WNBA Liberty vs. Chicago Sky game will benefit LIAF services and programs for its families. The final score was 58-52, which secured New York its playoff spot in the Eastern Conference. Janet is pictured with Kym Hampton, top former WNBA player, NY Liberty.
▲ The 14th Annual Golf Classic was held June 18 at the Sands Point Country Club in Sands Point, NY. More than $225,000 was raised for LIAF programs and services. Pictured left to right are honorees Tom, Kevin and Bob Murphy, three brothers with firsthand experience caring for a family member with Alzheimer’s disease.
▼ “Understanding Alzheimer’s Disease,” a free informational lecture by Roberto Malinow, MD, Professor of Neuroscience at Cold Spring Harbor Laboratory, will be held October 23 at 7:00 PM at the Lab’s Grace Auditorium, Route 25A, Cold Spring Harbor. Dr. Malinow will discuss the latest approaches to understanding the brain, what goes wrong in a variety of diseases, including Alzheimer’s and Parkinson’s, and how researchers are working to improve the treatment of these and other brain disorders. This event is sponsored by LIAF and Eisai Inc. To make a reservation, please call 516.367.5016. Dr. Malinow holds a bachelor’s degree in mathematics from Reed College, his medical degree from New York University School of Medicine, and his doctorate in neurobiology from the University of California at Berkeley. He has authored and co-authored a number of research papers, and is the recipient of numerous honors and awards including the LIAF “Excellence in Alzheimer’s Research Award” in 2004.
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▲ Barbara Vogel, LMSW, Director of Social Services Staff at the Long Island Alzheimer’s Foundation, has accepted the position of Social Work Program Coordinator of the Geriatric Psychiatric Division at Zucker Hillside Hospital, a member of the North Shore-LIJ Health System.
▲ Josh Levine of Laurel Hollow is a caring young man who, at age thirteen, is learning how wonderful it feels to give to those who are in need. Josh, pictured at right, chose to donate a percentage of his monetary gifts from his Bar Mitzvah to the Long Island Alzheimer’s Foundation in honor of Barbara Himler, his grandmother, who developed Alzheimer’s disease about eight years ago. Josh’s “Nana,” pictured at left, was unable to attend the festivities due to her condition.
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Events For more information on these and other happenings, call 516.767.6856.
Wednesday, November 7, 2007 7:00 PM to 9:00 PM Commemorative Candlelighting Ceremony The Bristal at North Hills 99 South Service Road, North Hills October 21, 2007 Metro Classic “Boroughs vs. Burbs” Christ the King Regional High School
November 17, 2007 20th Annual Remembrance Ball The Garden City Hotel
October 23, 2007 Understanding Alzheimer’s Disease Cold Spring Harbor Laboratory
December 15, 2007 Hoops to Remember Herricks High School
March 13, 2008 “Coping & Caring” Conference Crest Hollow Country Club
14th Annual
Outstanding Service Awards Luncheon
April 10, 2008 The Garden City Hotel, Garden City The Long Island Alzheimer’s Foundation wishes to honor volunteers or professionals who have gone that extra mile in bringing exceptional service, creativity and dedication to help individuals with Alzheimer’s disease and their caregivers. Please use the nomination form to send us information on your special organization or individual. Nominations must be submitted by Thursday, January 31, 2008.
Nomination Form Name of Individual or Organization Nominated: __________________________________________________________ Business Address ___________________________________________ __________________________________________________________ City/State/Zip _______________________________________________ Business Phone # ___________________________________________ Home Address of Nominee: __________________________________________________________ City/State/Zip _______________________________________________ Nominee Home # ___________________________________________ Name and Title of Person Submitting Nomination: __________________________________________________________ Organization of Person Submitting Nomination: __________________________________________________________ Nominator Phone # __________________________________________
Suggested Nominees An Individual Volunteer A Support Group Leader A Civic-Minded Youth A Community Service Group A Day Care Program A Hospital or Nursing Home A Community-Minded Public Official A Health Care Professional
Please summarize in 250 words or less the reason(s) why you are nominating this individual or organization. Please attach narrative.
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Loved Ones
In Honor of... In Recognition of LIAF’s Fine Work Jay’s 60th Birthday Ellen Blecher Katy Fede Jay Gaines
Benjamin Gardner’s 90th Birthday Blanche & Larry Hermele Terry Kamin Erica Kyriakopoulof Maya Levine Aunt Edna Lomagistro’s 80th Birthday Marie Lombardi
Erin Magee Alan Markowitz’ 45th Birthday Marilyn Miller’s Bat Mitzvah Lucy Presti Mrs. Estelle Schwartz’ Birthday Peter Scotese
Pedro & Milla Scotese Mr. & Mrs. Larry Skolnick’s 50th Anniversary Richard Steppe Muriel Streim Barbara Vogel Toba Weinstein, Happy Birthday
Abe Falk Frances Farese Eleanor Farkas Goldie Feldman Samuel Ferretti Walter A. Fi Ina Findling Doreen Finocchio Abraham Fischer Charles Fischer Carmella Fischetti Mildred Fischetti Lucy Fitzgerald John R. Follini Charles Frank Pauline Frankel Mr. Harold Froh Ellen M. Gallagher Elizabeth Geib Carol Geller Sol Gellman Carole Giambalvo’s Mother Roselle Giglio Mellor A. Gill Mary Giodano Josephine Gioia Sylvia Glazer Lillian & Herman Goldberg Mrs. Eva Goldberg Charles Goldstein Sue Goldstein Sara Gonzalez Edward Harse Marion Harvey Clifford F. Hawes, Sr. Barbara Himler Leon Horowitz Michael Ignatowitz Anthony Iovino Bernard Jaffe Richard Johnston Mrs. Beatrice Joseph Gertrude Josephson Jack Judge Helen Kaiser Martin Kaltman
Cal Kamin Bea Kaplan John E. Kase Goldie Katz Francis J. Kehrbaum Edward J. Kiefel Emily Ann Kinch Rudi Klein Catherine Kofler Olga Kuri Catherine Layden Nancy LeBlang Maria Lettieri Stanley Levine Nancy Lindenauer’s Mother Rita Sally LoPresti Mrs. Rose Macero Rose Macero Rosario Mancuso Lenore Marcus Joseph Mattera Mrs. Caressa McNease Carol Meinhold Anna Mettler Arthur Miller Donato Miranda Kay Monteforte William Munson John Murphy Christy Nair’s Parent Ingaborg Neumann Pat Nigro Helen Jean C. Noa Richard Nobile Ann Palatucci Warren Paley Jerry Panos Norman Pell Catherine Pepe Angelo Pugliese Lillian Raber Frank Racanelli Cira “Sally” Rahn Mary Lou Rath Herb Rein Natalie Rein Muriel & Sydney Resnick Harvey Robbins
Margaret Roberts Dolores Rogan Bobbie Rosenberg Phyllis Roth Phyllis & Monroe Roth Gaspare Rotolo Shoshanna Rubin John Sales, III Harold Satran Warren Sava Joan Schaeder Toby Scharfman Milton Schatten Lisa Scheer’s Father Elizabeth Schroeder Donald Schulman Ron Schulman Lillian Schwartz Nancy Scruggs Helen Shukofsky Herbert Siegel Hilda Siegel Ted Siegel Abe Siev Phyllis Sinatra Joseph Smirti Morris Smith Mrs. Marie Solomita Anna Solomon Florette Sonner’s Brother Madeline Spatafora Joseph Spindel Mrs. Marcia Starr Charlie Stegemann Grace Stein Kurt Herbert Stoffel Kenneth Stonheimer Herbert Stortz Max Strum Edith Sullivan Gilbert Teitelbaum Covadonga Toral Mike Vermut’s Grandfather Vernon C. Wagner George Walsh Larry Weiss Anna Ziegler Mrs. Helen Zweigel
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In Memory of... Robert Abrams Joseph Advey Eli Africk Lilly Agnello Carmela Agostinelli Digna Alarcon James Amico Rhoda Appel Irene Barber Sol Basi Giuseppantonio Bello Maurice Benalloul Roslyn Berger Margaret Bohner Joan F. Boldish Joseph Bonafede Margaret Bozza Myrtle Morgan Bradshaw Robert Brauer Mrs. Briner Janice L. Burns Robert Byrnes Emma Cambria Stella Campo Louise Capelli Carmella “Millie” Caruso Basdeo Chatarpal Catherine Coleman John Condia Dominick Costanza Raffaella Costello Theresa Curiale Mary Deliso Grace DeMartini Louise DeSantis Angela DiMartino M. DiPrima Marion Dismas Elinore Dubin Theresa Durante Muriel Eckman Carol Eisenkramer Alfred Ellison Caroline Engelman Alicia Escamilla
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Products Title
Cost Total
About Alzheimer’s Disease Booklet Caring for Someone w/AD Booklet About Choosing a Nursing Home Booklet About Entering a Nursing Home Booklet About Paying for Nursing Home Care Booklet About Hospice Booklet About Dementia Booklet Advance Medical Directives Booklet About DNR Orders Booklet
1.00 1.00 1.00 1.00 1.00 1.00 1.00 1.00 1.00
Life Sustaining Treatments Booklet Alzheimer’s Disease Directory of Services Front Row Seat: Sing Along w/Barbara Series: DVD Volume 1 Oldies DVD Volume 2 Songs of the Holidays DVD Volume 3 More Oldies
1.00 50.00
Caregiver Art by Miriam Cassel
20.00
LIAF Cookbook
20.00
Living w/Alzheimer’s Video Series
15.00
Meditations for Self-Healing CD by Judy Talit
15.00
Guidelines for Caregivers Audiotape
5.00
A Walk Down Memory Lane CD
15.00
The 36-Hour Day Caregivers’ Guide
15.00
When Meme Came to Live at My House Childrens’ Book
5.00
Legal Briefs Latest in Elder Law
20.00
24.00 24.00 24.00
Grand Total, All Items (Shipping & handling are included)
Help us help others... I Wish to Make a Donation to LIAF. Please Circle One: $10
$20
$50
$100
$250
Directory of Services
Other ___________
Contributor Name _________________________________ Address ___________________________________________ City/State/Zip _____________________________________ Phone ____________________________________________
for Nassau, Suffolk Brooklyn & Queens Name _____________________________ Address ___________________________ __________________________________ City ______________________________ State/Zip __________________________ Phone _____________________________ Suggestions ________________________ ___________________________________ ___________________________________ ___________________________________
Kindly send acknowledgement to: Name: _______________________________ Address: _____________________________ City/State/Zip: ________________________ (LIAF sends an acknowledgement to the contributor as well.)
Please Make checks payable to: Long Island Alzheimer’s Foundation, Inc. 5 Channel Drive, Port Washington, NY 11050
In Honor of ________________________________________ In Memory of ______________________________________ Contributions to LIAF are tax deductible to the full extent of the law. A copy of our most recent financial statement can be obtained from the NYS Office of the Attorney General, Charities Bureau, 120 Broadway, New York, NY 10271.
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Please designate LIAF as your United Way Charity
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