From the Executive Director Letter Writing: a lost Art As Therapy
Download 410.63 Kb. Pdf ko'rish
|
|
Participate?
There is no single reason to make this choice. And while most are satisfied with it, we should all consider such a deci- sion very carefully. There are a number of benefits. Some people with dementia and their families feel that by participating now, they will improve the chances for others later. Others believe that a particular research study may lessen their symptoms or slow the disease process. Research centers have the most advanced diagnos- tic methods avail- able for analyzing the degree and type of dementia. Most will provide the testing and evaluation free of cost. While research staff cannot replace the personal or family physician, research patients can receive more medical and other kinds of attention than people seen routinely for Alzheimer’s disease or other dementing illnesses. And research staff has more experience with the complications which accompany these illnesses. There are also some risks to patients, and bur- dens on caregivers. Some studies require frequent visits and many tests, and often require the close involvement of a caregiver. Some treatments have uncomfortable side effects, other procedures and drugs may have even more potentially serious complications. And some clinical trials require that a percentage of participants take a placebo rather than the drug being studied. Another consideration is that some studies may require that you not be taking prescribed drugs for Alzheimer’s, such as Aricept or Cognex, or certain other medications. What Else Should You Know? By law, research of any kind involving human subjects must be approved by an independent committee made up of physi- cians, lay persons and others. Among other things, they must agree: Ⅲ the study will contribute new information to the field Ⅲ the benefits outweigh the risks Ⅲ participation is entirely voluntary Ⅲ participants can drop out of any study at any point without penalty
Ⅲ Informed Consent forms are understandable and fully describe the risks and benefits. What Is Informed Consent? It is a process which insures that you-or your representative- completely understand the intent, procedures, risks and benefits of a study, and includes signing a written agreement indicating your willingness to participate. Extra protections apply to vul- nerable populations, such as people with memory impair- ments. The Informed Consent form holds the research physi- cian, the treatment’s manufacturer and the medical institution conducting the research to the normal standard of care for your well-being. People with Alzheimer’s disease and their families are major contributors to new research. The only way to improve treat- ment and decrease the burdens and cost of this disease is to study people who have it, and those who help care for them. The research community depends on volunteers to give new treatments a carefully monitored trial. For a summary of ongoing dementia research studies or for more information about participating in a study, drug trial or control group, please call or write the Alzheimer’s Association, Massachusetts Chapter, or visit our Web site at www.alzmass.org. Alzheimer’s Association, Massachusetts Chapter Page 15 Copyright © 2000 Alzheimer’s Disease and Related Disorders Asso- ciation, Massachusetts Chapter (4th edition). Any reproduction of this material should contain the following credit: This material provided cour- tesy of the Alzheimer’s Association, Mass- achusetts Chapter. “We were determined to participate in something that might help us take some control over this disease.” —The Noonan Family Safe Return “It’s a great collaboration. It’s going to have a great impact.” —Norfolk County Sheriff Michael Bellotti Important Note: State Agencies Now Cover Safe Return Fee Advocates succeeded in gaining coverage of the one-time $40 cost of Safe Return registration for eli- gible individuals through the state’s ASAP/Homecare agencies. Safe Return is now an approved Pur- chased Service for home care program clients. To further facilitate registra- tions in Safe Return for people with memory im- pairments, the Massa- chusetts Chapter will allow ASAP/Homecare agencies that wish to do so to sub- mit registration applica- tions directly to the chap- ter, which will bill them on a monthly basis. Special thanks to Dan O'Leary, for- mer Massachusetts Chap- ter Executive Director and current ED at Mystic Valley Elder Services, state Elder Affairs Secretary Lillian Glickman and the Gov- ernor’s Advisory Council on Alzheimer’s Disease for their attention to this life- saving effort. b
Alzheimer’s Association, Massachusetts Chapter F or an older person with Alzheimer’s disease, wandering from home or from a care facility and becoming lost is not only a high probability, it is an emergency situation which police and fire departments are increasingly being called on to resolve. To address this problem, the Alzheimer’s Association’s Massachusetts Chapter and the Norfolk County Sheriff’s TRIAD program conducted a unique and highly practical training June 15 for police and fire department personnel in the 28 cities and towns comprising Norfolk County.
An estimated 130,000 people across Massachusetts suffer from Alzheimer’s dis- ease or a related dementia. Most will wander and get lost at some point in their illness. Nationally, 35,000 such cases are reported to police each year. Many more go unreported. The special skills the training builds will help to resolve wanderer cases quickly and safely. “It’s a great collaboration. It’s going to have a great impact,” Norfolk County Sheriff Michael Bellotti said in an interview with Regina Montague of the Boston Globe, who covered the full day training. Reviews from the 40 participants were excellent. The TRIAD pro- grams, coordinated by Sheriff’s Departments in each county, connect elders, elder service providers and law enforcement through outreach and education. The June 15 training was held at St. Anthony’s Church hall in Cohasset and was the second in a series planned for each county through the TRIAD programs. In addition to Norfolk County Sheriff Michael Bellotti, co-sponsors of the June training included Norfolk County District Attorney William Keating, Sunrise assisted Living in Cohasset and the Cohasset Police Department. The centerpiece of the training was police search and rescue operations, taught by Curt Rudge, regional chief park ranger for the state’s Department of Environmental Management and authority in search management. Gerald Flaherty of the Massachusetts Chapter staff, who has been involved in over 700 lost elder cases, offered a short introductory overview of the Alzheimer’s Association’s national Safe Return program, a 24-hour service funded through the U.S. Justice Department. A fur- ther practical benefit of the training was a wrap-up section on interpreting laws which have a special bearing on memory- impaired elders, taught by author and attorney John Scheft, former director of the state Attorney General’s Elder Protection Unit. The series’ first training was sponsored by the Association’s Cape and Islands Chapter April 24 in Centerville for police and fire departments in Barnstable County, in cooperation with our chapter and the Barnstable County Sheriff’s and District Attorney’s Offices. Many thanks to Cape Chapter executive direc- tor Kathy Pastva for her hard work in making that kick-off training a success. Additional thanks for the Cohasset training go to Mary Penny and Christine Haden of Sun- rise Assisted Living, who not only provided for the food and site, but also raffled off copies of Atty. Scheft’s three books on the law for police; and to Special Deputy Sheriff Courtney Cahill. A spe- cial thank-you goes to family caregiver Laura Sprague, who shared her father’s wandering expe- rience with Boston Globe readers. b
Program registration information, call Bea Goldberg at 1-800- 548-2111 or visit the Massachusetts Chapter’s Web site at www.alzmass.org. District Attorneys Also Join Statewide Effort County Sheriffs Sponsor Safe Return Training Unsung Heroes: Search and Rescue Volunteers T he Alzheimer’s Association’s Massachusetts Chapter wishes to express its most heartfelt appreciation to members of the all- volunteer Central Massachusetts Search and Rescue Team (CMSART) for their assistance to the Safe Return Program. Under the leadership of president Ron Bruchmann, the team recently went above and beyond their usual good work. Answering a request for assistance from colleagues at the Northern Connecticut Chapter, our chapter’s Safe Return coordinator contacted CMSART, which had previously responded to several requests from our chapter for local searches. Ten members of the CMSART team made the long drive to central Connecticut on June 10 to search for a man who had wandered from an assisted living facility 12 months ago and has never been found. Working with the Northern Conn. Chapter, the missing patient’s family, local law enforcement and Conn. State Police, team members spent the day slogging through swamps and thickets, and will be returning again for a second search of the area. Recently, the CMSART team was instrumental in another Safe Return case, aiding in the successful recovery of a missing Alzheimer patient from Fitchburg, Mass. Curt Rudge, chief of Ranger Services for the state Department of Environmental Management, also lent his invaluable expertise in that case. On behalf of the thousands of people with Alzheimer’s disease and their families who rely on Safe Return, thank you once again to these unsung heroes. b
Alzheimer’s Association, Massachusetts Chapter Page 17 Community Partnerships In each Newsletter, space permitting, we highlight the good work of some of our 11 Alzheimer Community Partnerships. For more information about these energetic collaborations of local family and pro- fessional caregivers, call the Alzheimer’s Association, Massachusetts Chapter, at 617/868-6718 and ask for the Partnership contact number for your community, or visit the chapter’s web page at www.alzmass.org and click on “Partnerships.” Photos on this page by Paulette Masse Baypath Kristen Goldner of the Baypath Alzheimer’s Partnership tells us the Partnership is sponsoring a conference for elders titled “Everything You Always Wanted to Know about Memory Loss but Forgot To Ask” on Friday, October 20 from 8:30 to 11:00 a.m. at BayPath Home and Community Services in Framingham. For information, call Kristen at 508/879-1771.
Partnership co-chair Gwen Kopka of North Shore Elder Services reports that there are now ten family caregiver support groups operating in the North Shore Alzheimer Partnership area, up from only five when the Partnership formed four years ago, including a support group for people with early stage Alzheimer’s. The Partnership meets monthly. It has organized a training seminar for over 100 Certified Nurse Assistants, Home Health Aides and other paid caregivers, and also held its third annual Alzheimer’s Caregiver Conference. More than 100 fami- ly and professional caregivers turned out at the Community Life Center in Peabody to hear Dr. Paul Raia (of the Massa- chusetts Chapter staff) speak on habilitation therapy; Marilyn Stesonis of Benchmark Assisted Living present on the effect of a family member’s Alzheimer’s disease on young children and grandchildren; and Alzheimer consultant and author Joanne Koenig-Coste share her knowledge of early stage issues. The Partnership also received a grant of $4,000 from the John Henry Carr Alzheimer’s and Aging Foundation to provide subsidized respite care in assisted living programs in the area. Partnership member agencies are working to expand the avail- ability on the North Shore of quality assisted living facilities with dementia special care units, and to have the active partici- pation of those facilities in the Partnership. Families that could not otherwise afford this resource are encouraged to consider a planned respite break. Southeastern Mass. Partnership co-chair Paulette Masse of Country Gardens Nursing and Rehabilitation Center in Swansea reports on the Legislative Breakfast spon- sored in June by the Alzheimer’s Partnership of Southeastern Mass. Participants gathered at White’s of Westport to hear firsthand the importance of legislative advocacy from a impressive panel including: (from left) state Senator Joan Menard of Somerset; Susan Kelly-Grasso of the Massachusetts Chapter staff; Alzheimer family member Jeannine Ruggeiro; and geriatric nurse practitioner Ameia Yen-Patton of Southcoast Hospitals Group. Panelists offered different perspectives on the needs of people with Alzheimer’s and their caregivers, but all urged active advocacy in support of Alzheimer related items in the state’s FY01 budget. Many thanks to Beth-Ann McCrae, whose chairmanship of the Partnership’s advocacy committee helped make the day such a success. (For more on the state budget, see pages 2 and 8.) Another innovative segment at the Southeastern Mass. Family Conference included lively skits from the play “Opening Minds” by Sharon Jenson of Nichols House in Fairhaven. The skits portrayed typical caregiving scenarios and dramatized their successful resolution. Shown here in one such skit are Sharon Jenson, Partnership co- chair Paulette Masse (in rocking chair) and Tadd Clelland of Marriott Mapleridge in Dartmouth. White’s of Westport was also the scene of the Partnership’s annual Caregiver Conference on May 20. Dr. Neal G. Ranen, asso- ciate professor of psychiatry at Pennsylvania State College of Medicine, delivered the keynote address on “When, Where and How Medications Should Be Used To Manage Behaviors in Alzheimer’s Disease.” The confer- ence also featured an issue-spe- cific poster session. Shown here are Beth-Ann McCrae of the Village at Willow Crossings in Mansfield, and furry friend, demonstrating the value of pet therapy.
Susan Garland reports on an exciting new program offered by West Suburban Elder Services, one of the member agencies of the West Suburban Alzheimer Partnership. Through the Alzheimer’s Caregiver’s Coach Program, with Susan as “coach,” family caregivers can get over- the-phone or in-home support to:1) understand and resolve crises; 2) learn about Alzheimer’s disease and related disorders; 3) manage difficult behaviors step-by-step; and 4) connect to available services such as respite, home care, day programs, legal assistance and support groups in the West Suburban area. Susan, a clinical social worker who also volunteers on our Helpline, has advised us that foundation support for the Coach Program allows her services to be offered without a fee at this time. Caregivers can contact her directly at 1-617-972-5692. b Community Partnership News Development Page 18 Alzheimer’s Association, Massachusetts Chapter Thank You to Our 1999 Memory Walkers, Sponsors and Volunteers Thanks go also to:
Genesis Eldercare Patrons Blaire House Healthcare Centers Progress Software Sunrise Assisted Living Friends Boston Alzheimer’s Center The Boston Globe The Cambridge Tab Cambridge Trust Company Lifecare Centers of America McLean Hospital Novartis
Secure Horizons/Tufts Health Plan for Seniors
Welch Healthcare and Retirement Group Other Sponsors Arcadian Farms; At Home Care; Au Bon Pain; Bear Hill Rehab & Nursing Center; Belmont Manor Nursing Home; Bob’s Stores; Briarwood Healthcare; Brigham’s, Inc.; Brighton Garden of Danvers; Cadbury Commons; Cambridgeside Galleria Mall; The Community Family, Inc.; Converse, Inc.; Covenant Health Systems; Coyote Impressions of Arlington; Dunkin Donuts/Watermark Donut Co.; Elihu White Alzheimer’s Center; Epoch; Esai; Evanswood Center for Older Adults; Glen Ridge; Hart Supply; Hearthstone Alzheimer Care; Independent Living; Jewish Healthcare Center; Maplewood Place; Marathon Healthcare Group; Marland Place; Masonic Home; Memory Ride, Inc.; Necco/New England Confection Company; Olympus Health Care; Organization for Enhanced Capability; Park Avenue Nursing & Rehab; Peggy Lawton Cookies; Pfizer; Royal Sonesta Hotel; Sprint; St. Mary Health Care Center; Standish Vllage; Sunbridge; Veryfine Products; Wachusett Mountain; Whitney Place; Wilson Farms In Western Mass: Platinum Sisters of Providence Health Systems Gold Chancellor Gardens of East Longmeadow Health New England Harvard Pilgrim Healthcare Sweet Brook Care Centers, Inc.
The Arbors at Amherst The Atrium Berkshire Healthcare Systems Charlene Manor East Longmeadow Skilled Nursing Center Fairview Manor Kimball Farm Linda Manor Mount Greylock Skilled Nursing Unit at Berkshire Medical Center
Willowood of Pittsfield Hearthstone Alzheimer Care at Laurel Lake Little’s Pharmacy & Surgimed Melbourne Place Assisted Living Community Northern Berkshire Healthcare System Quabbin Valley Health Care Renaissance Holyoke/Westfield+Home Health
Berkshire Bank Easthampton Savings Bank Eisai Pfizer Jewish Geriatric Services The Memory Clinic Reeds Landing Westmass Eldercare Williamstown Savings Bank
Bacon & Wilson Balise Motor Sales Bank of Western Massachusetts Berkshire Life Insurance Co. Coakley, Pierpan,Dolan & Collins Congressman Edward Markey (far left) leads Memory Walkers. Photo by Ellen Shub A s we prepare for Memory Walk 2000, we would once again like to thank the more than 3,000 walkers, along with our generous corporate sponsors and a marvelous group of volunteers, who made 1999 our most successful Memory Walk to date. Including the impressive results from the former Western Massachusetts chapter, proceeds exceeded $300,000. A special thanks to our satellite Walk site coordi- nators: in Fall River at Heritage Park at Battleship Cove, Paulette Masse and Terrie Arruda; in Haverhill at Glynn Memorial Nursing Home, Nancy Savarese; in Lowell at the Sampas Pavilion on the Merrimack River, Harriet Udoff, Joan Johnson and Susan Antkowiac; in Walpole at the Bird Middle School, Bill McGrory; and in Worcester at the Blair House, Angela Monahan. Kathryn Hedgepeth did a fabulous job coordinating the Western Massachusetts sites, at the Apple Squeeze Festival in Lenox and at Stanley Park in Westfield. Hoodsie’s Gang, walking in memory of Hoodsie Maureen Wade, who passed away last July, raised over $10,000 and for the fourth year in a row was the top family team. Sherrill House in Jamaica Plain, repeating as top corporate team in Eastern Massachusetts, raised over $5,000, while the Winchester Alzheimer Caregiver Support Group took top honors in the support group team category, also raising in excess of $5,000. In Western Massachusetts, the top corporate team, with 68 members from the Sweet Brook Care Centers in Williamstown, raised $6,000. Our top individual walker was Marilyn Hayes, who alone raised over $8,000. For our music, thanks to Linee. The National Anthem was sung by Siddhartha Misra. Alzheimer’s Association, Massachusetts Chapter Page 19 Country Curtains Craneville Place of Dalton Franklin County Home Care Corp. Attorney Michael Hooker Hoosac Bank James E. Kimball, Jr., Inc. Memory Disorders Program at Baystate Medical Center Pittsfield Cooperative Bank Qualified Plan Consultants Tripod, Inc. Umlauf & Dunn
Channing L. Bete Devanny Condron Funeral Home Hart’s Pharmacy Hickey-Birches Funeral Home Old Country Buffet Mount Snow, Vermont
Marion Pollock, Stanley Solomont, Janet Reardon, Marjorie Shea-Burke, Allison Drescher, Joe Walsh, Christina Kinard, Anne M. Clear, Jeanette Rosa- Brady, Sheila Walsh, Patrick J. Lavoie, Patricia Tuscano, Rory J. Drolet, Carolyn Fleiss, Nora Ghillany, Tom Repucci, Roberta Rosenberg, Hathie Juliano, and Tim Wade. In Western Mass: Art Ford, Barbara Milensky, Jaime Cass, Kathryn Wagner, and Royster Hedgepeth
Congressman Ed Markey, Karen and Paul Bibo, Susan Cook, Geri Crews, Jean and Jim Diprima, Lisa Diamandis, Priscilla Gibson, Elizabeth Henderson; Elizabeth Kirstein, Lou Laider, Don Milotte, Tim Morrison and family, Rachel Goldberg, Sue Sharrow and friend Joan, Lil Simons and fami- ly, Stanley Solomont, Carol Steiner, Tracy Stewart, Kathy Walsh and family, and Cathy Yarrow. In Fall River: Terrie Arruda, Tina Barboza, Judy Elstee, Linda Gerrard, Paulette M. Masse, Linda Mauro, Christine Nelson, and Mary Lou Spinelli.
Sullivan of the Glynn Nursing Home, and the Glynn Alzheimer’s Support Group.
In Lowell: Susan Antkowiak of The Atrium at Drum Hill, the Boston Bruins, Paula Campbell, Joanne Chaulk, state Representative Carol Cleven, Community Family ADHC, Community Teamwork, Inc., Mayor Eileen Donohue of Lowell, George and Marylou Eliades, Deputy Superintendent Paul Goyett and the Lowell Auxillary Police, John Hogan, Joan Johnson, Donna Koski, City Manager Brian Martin, Dr. Karen Melillo, Dr. Stephen Moses, Enore Ouellette, state Senator Steve Panagiotakos, Skip’s Restaurant, Assistant City Manager James Smith, TJ the DJ, Terry Toland of Toland Communications, Trinity Ambulance, Veryfine Products, and Drew and Joan Weber and The Spinners. In Walpole: William McGrory, Nancy Ferrari, Kathy Vachon, Joanne Giusti and Sue Mcquaid (all of Caritas Norwood Hospital), Beth McCrae of The Village at Willow Crossing, Madeleine McNielly of Community Visiting Nurse Agency in Attleboro, Dawn Gemme of the Attleboro Police Department, Monica Young of Epoch Senior Living at Norton Place, Jamie Brenner Gutner of the VNA Care Network, Inc., Julia Manning of Sunrise Assisted Living, Linda Connor- Lacke, DJ Cage of Music Makes It!, and Ed Wiseman.
Claire Gedman, Pat Rourke, Lisa Martin, Alicia Kenneway, David Poullin, Alicia Nordin, Robert Monahan, Sue Nolan, Caitlin Murphy, Thomas Nolan, and United Way Volunteers.
Denise Beaulieu, Meredith Brown, Shirley Burke, Joanne Chuslo, Pat Clark, Cara Deming, Elaine Farrell, Art Ford, Karen Gold, Beth Hinkley, Hayl Kephart, Amy Kruger, Janet Laroche, Penny McCoy, Barbara Milensky, Roxanne Mosher, Maryellen Ford Mougin, Gail O’Hearn, Stephanie Peterson, Cathleen Pula, Valerie Ruscio, Fredrica Sloan, Jennifer Summers, Delores Thimot, Kelly Thorn, Jill Turomsha, Audrey Walbert, Melanie Walker, Maryann Watson, and Maxine Wisbaum.
“Make the Link” Golf Tournament MONDAY, AUGUST 7 Our 3rd Annual “Make the Link” Golf Tournament for the benefit of the Alzheimer’s Association, Massachusetts Chapter, is set for Monday, August 7, at the Woodland Golf Club in Newton. We are thrilled that Red Sox pitch- ing legend Dennis Eckersley will again be joining us as our Honorary Chair for an event that has emerged as one of the top charity golf tournaments of the summer. Our 2000 tournament is sponsored by Verizon Wireless, with presenting sponsor Praecis Pharmaceuticals, Inc. You can look forward to a wonderful day for a special cause on a marvelous golf course. And some great prizes! Please join us on the Woodland links. Registration 10:30 a.m. Lunch. Shotgun start 1:00. Cocktails, auction, awards. Dinner 7:00 p.m. For more information, e-mail Dick Fleiss in our development office at richard.fleiss@alz.org or call Dick at 617/868-6718 x217. Corporate sponsorship oppor- tunities are available. Please also call if you have items you would like to donate to the auction por- tion of the evening program. b
Help celebrate our Massachusetts Chapter’s 20th anniversary Annual Meeting. At the Museum of our National Heritage in
guished panel, including research scientist Marilyn Albert, author and lecturer Joanne Koenig-Coste, and Michael Splaine of the National Alzheimer’s Association Public Policy Division, for a lively discussion highlighting our two decades of service to people with dementing illnesses and their families. Special honorees include Dr. F. Marott Sinex, a chapter founder, state Elder Affairs Secretary Lillian Glickman and long time volun- teer Phyllis O’Hara. Dessert reception. For more details, e-mail Rachel Hawk in our education office at rachel.hawk@alz.org or call 617/868-6718. Chapter members will be receiving invi- tations and brochures. Memory Walk 2000 SUNDAY, SEPTEMBER 24 Spirit, hope and lots of fun! Join us, along with Congressman Ed Markey, our Memory Walk honorary chair, and Dr. Deborah Blacker of MGH, our honorary medical chair, for the Massachusetts Chapter’s 8th annual Memory Walk, sponsored by Praecis Pharmaceuticals, Inc. This is our biggest and most important fundraising event. The main walk site again this year will be in Cambridge, in Canal Park at the CambridgeSide Galleria, on Events SCU Training September 28 Dr. Paul Raia of the Massachusetts Chapter staff will be featured at the Massachusetts Extended Care Federation’s second Special Care Unit training on Thursday, September 28, from 1:00 to 4:00 p.m. at the Holyoke Hospital Transitional Care Unit. For more information, please call Ann Turner of the Federation at 617/558-0202. G E T R E A D Y ! A L Z H E I M E R ’ S A W A R E N E S S M O N T H I S C O M I N G I N N O V E M B E R ! Page 20 Alzheimer’s Association, Massachusetts Chapter S A V E T H E D A T E ! C lose to 5,000 physicians, hands-on professional care providers, public policy- makers, researchers and staff from Alzheimer organizations world- wide gathered at the World Alzheimer Congress 2000 in Washington, D.C. July 9-18 to share information on pivotal research, on bridging the gap between research and care, and on creative care. On Sunday, July 16, President Clinton announced $50 mil- lion in new federal funding for Alzheimer research. These new funds will be used to explore some of the exciting areas of research discussed during the Alzheimer Congress. We are extremely proud to announce that our Massachusetts Chapter was one of 17 chapters within the Association’s talented 190-chapter network to send presenters to join the world’s lead- ers in Alzheimer research and care at this first-of-its-kind con- ference hosted by the Alzheimer’s Association (USA), Alzheimer’s Disease International, and the Alzheimer Society of Canada. Rep- resenting the Massachusetts Chap- ter were Board chair Nina Silver- stein, PhD., of the University of Massachusetts Gerontology Insti- tute; chapter training consultant, author and former Board of Direc- tors chairperson Joanne Koenig- Coste, MEd; and the chapter’s Director of Patient Care and Family Support, Paul Raia, Ph.D. As we welcome a new century, we also face the reality that more than 22 million people worldwide will develop Alzheimer’s disease by 2025. World Alzheimer Congress 2000 offered a unique opportunity to share knowledge and identify strategies for eliminating the threat of Alzheimer’s disease to today’s citizens, and to future generations. b
World Alzheimer Congress Listed dates are also highlighted on our Web page at www.alzmass.org. Sunday, September 24. Registration 9:00 a.m. Save the date now for the full 6.2 mile “Spirit” walk or the two mile “Hope” walk along the scenic Charles River. There are also eight satel- lite Memory Walk sites across the state. Six of the eight satellite Walks—in Athol, Fall River, Haverhill, Lowell, Walpole and Worcester—will also take place September 24. Our Memory Walk in Lenox will be on Saturday, September 23, and the Walk in Westfield will be on Saturday, October 15. These always fes- tive events feature entertainment, refreshments and incentive prizes. The walker who raises the most money will receive two round-trip tickets on Southwest Airlines to a destination of choice. For more information, e-mail Sheila Watnick in our development office at sheila.watnick@alz.org or call Sheila at 617/868-6718 x 208. Corporate sponsorship opportunities are also available for Memory Walk. b
FRIDAY, OCTOBER 6 This annual half day training for current and prospective Alzheimer family support group leaders will run from 9 a.m. to 1 p.m. at the Willows in Westboro. Keynote by Paul Raia, psychologist on staff at our Massachusetts Chapter. Dr. Raia will address “The Issues behind the Issues,” a discussion of how group leaders enable caregivers to get the greatest therapeutic benefit in a support group. Includes break-out group discus- sions. For more information, call Harriet Udoff at the Massachusetts Chapter’s Lowell area office at 978/937-5576 or e-mail at harriet.udoff@alz.org.
The Alzheimer’s Association will hold its first Spanish Language Conference for Families at the Curtis Hall Com- munity Center, 20 South Street in Boston’s Jamaica Plain neighborhood. Drs. Pascual Leone of Beth Israel Deaconess Medical Center and Antonia Coppin of the UMass Boston Geron- tology Institute will explain the difference between normal aging and Alzheimer’s disease, and current treatments. A panel of three family caregivers will also talk about their experiences with loved ones affected by dementia. Again, this half day con- ference will be conducted entirely in Spanish. For details, call Conchita Rodriguez on our Spanish language phone line at 617/868-8599. (See page 2 for Spanish translation.)
The chapter’s Medical & Scientific Advisory Committee has named Dr. Jeffrey Cummings, director of the Alzheimer’s Disease Center at UCLA as the prestigious year 2000 Matthew and Marcia Simons Alzheimer Research Symposium Lecturer. Dr. Cummings’ work studying and treating behavioral distur- bances in Alzheimer’s disease and the related disorders is an area of enormous interest to family and professional caregivers, clinicians and scientists. His diverse writings include “Probable Alzheimer’s Disease in an Artist” and transcultural aspects of dementia. At the Colonnade Hotel in Boston. Dessert recep- tion. Public welcome. Free of charge. Chapter members will be receiving invitations and brochures. b
Page 21 Events “Sketches of Life” Exhibit B elow is one of the works from “Sketches of Life,” an exhibit of art and artifacts showing July 20-21 in the Carol Schlosberg Alumni Gallery at the Montserrat College of Art in Beverly and highlighting the stories of people in the early stages of Alzheimer’s disease. The show, an inter- generational project opened to the public, combines the artistic renderings of Montserrat students with the oral histories of residents of the OceanView at Ellis Square assisted living facility. Its intent is to preserve the memories of OceanView’s residents with early stage Alzheimer’s while broadening the Montserrat students’ experiences. The students began the project early in the spring semester by meeting with the residents in one-on-one sessions. The resulting exhibit, coordinated by Elissa Della- Piana, chair of the college’s Illustration Department, includes students’ interpretative art work along with photographs and other memora- bilia provided by the residents. This collaborative project was funded in part by the Massachusetts Cultural Council, a state agency that funds the Beverly Cultural Council, in cooperation with the Alzheimer’s Association, Massachusetts Chapter. Summer gallery hours 10 to 4:30, Monday through Friday. The gallery is accessible to people with disabilities and admission is free. For more information, please call 978/921-4242. b
T H E D A T E ! First Weinstock Memorial Triathlon Raises $2,500 On May 21, at the Workout Club in Marshfield, organizers Maggie Morley and Wendy Sears led 40 participants through the first annual Whitey Weinstock Memorial Triathlon, cover- ing a course which includ- ed stationary cycling, a three-mile run and weight lifting. Participants and local businesses raised more than $2,500 for Alzheimer research in honor of Maggie's father, Arthur "Whitey" Weinstock, who died last January after being diagnosed with Alzheimer's in 1995. For details on next year's race or to be placed on the mailing list for a race application, please call Maggie Morley at 781/545-7036.
Struggle with Familial AD Leads to Race for Research In Their Own Words: The Noonan Family History Family Corner Page 22 Alzheimer’s Association, Massachusetts Chapter I n 1967, with our mother Julie’s diagnosis of Alzheimer’s disease, came the answer to much confusion in our lives. Julie and her identical twin, Agnes, were born in 1924 in Agawam, Massachusetts. Julie married her high school sweet- heart and settled down to start a family in Stoughton, Mass. The first of Julie’s ten children was born in 1942. In the early 1960s, our mother started showing signs that her personality was changing. Once a woman who could manage with joy all the duties of a busy home—with several older children and three under the age of five—she was now very tearful, confused and depressed. Our father was the first to notice these subtle changes. In the years just before her diagnosis, our mom had notice- ably progressed to forgetting her responsibilities as a home- maker, wife and mother. This affected all the children in many different ways, but the common thread for all of us was the confusion that engulfed our lives. Imagine also the adolescent who is ashamed of his mother’s inability to fulfill her responsibilities, or the toddler simply wondering where dinner is. We had no idea why she often forgot to cook dinner, lost our father’s paycheck, forgot to pick one of us up at school. After years of men- tal health diagnoses and treatments, everything but Alzheimer’s was eliminat- ed. At the age of 44, Julia Tatro Noonan was diagnosed with the disease. When Mom died in 1978, after years in a nursing home, we thought our struggle with the disease was finally over. But then her twin, Agnes, also developed Alzheimer’s, and died from its complica- tions in the late 1980s. Our lives seemed normal in the ensu- ing years, some of us already starting our own families. We thought that with Mom’s and Agnes’s deaths we had left the nightmare of Alzheimer’s behind us. But in 1993 the disease started to plague our family again. Our sister, Fran, started to show signs, and we started liv- ing this hell all over again when we realized the disease was back, having never really left. The familiar and haunting, empty look in Fran’s eyes as we talked with her reminded each of us of the same vacant stare we used to receive from our mother as children. And with Fran’s diagnosis came the realization that each of us is at great risk for this disease, with a 50 percent chance of contracting it. Already two of our siblings have been diagnosed with early onset Alzheimer’s, and two more are showing symptoms. As a family, we decided to band together to fight this disease. We have children and grandchildren who have inherited our genes. Will their lives be challenged with this mind erasing dis- ease? We have spoken publicly at colleges and nursing homes, at seminars and on national television trying to put a face on the disease. Fran has testified before Congress about the devas- tating emotional and financial effects on her and her family. We are working with some of the top researchers in the world, based in Boston. We have established an all-volunteer, nonprof- it organization, Memory Ride Inc., which produces a fundrais- ing bike ride from which all proceeds go to research through the National Alzheimer’s Association. As tragic as this disease has become to our family, we try to see it as we look at all of life: Is the jar half full or half empty? We say half full! And we will continue to put a name and face to Alzheimer’s disease. b
en route to the State House. This article is taken from the Web site of the remarkable Noonan family, which readers can visit at www.memoryride.com. It helps explain the yearly bike ride from the Berkshires to Boston that the family has organized in each of the last three years, raising $81,000 for the Alzheimer’s Association for research. This spring, the family’s dra- matic struggle with early onset Alzheimer’s was the topic of a three- part series on the WLVI Channel 56 Ten O’clock News. The final episode also offered viewers the opportunity for an on- line chat at the Channel 56 Web site with the Noonans and our Chapter’s vice-chair, Dr. Sanford Auerbach of University Hospital. Memory Ride WEEKEND OF AUGUST 26-27 Join us for this year’s challenging, two day Berkshires to Boston year 2000 “Memory Ride” to benefit Alzheimer research. Produced by the Noonan family’s Memory Ride, Inc. in cooperation with the Alzheimer’s Association, Massachusetts Chapter. Riders are fully supported as they cover a 165 mile course over Massachusetts’ beautiful backroads. Over the past three years, this event has raised $81,000, and we anticipate record results in August. For more information, call our chap- ter development office at 617/868-6718. visit our Web site (under Special Events), or connect to the Memory Ride, Inc. Website directly at www.memoryride.org. b
Alzheimer’s Association, Massachusetts Chapter Page 23 Support Group listing continued from back cover Support Groups Reunión
Mensual de Familias
Para familiares que cuiden a seres queridos con pérdida de memoria, Alzheimer’s u otra demen- cia, las reuniones se efec- tuarán los primeros miér- coles de cada mes. Desde las 12:30 hasta la 1:30 de la tarde. Sera en Farnsworth House, 90 South St., Jamaica Plain. Para mas información lla- men a Conchita Rodriguez al 617/868-8599. Lowell: Daphne Dumont 978/458-8773 Ludlow: Barbara Messler 413/589-7581 Lynn: Harriet Udoff 978/937-5576 Lisa Mercurio 781/596-2992 Malden: Jolyn Eck 781/391-0800 Marlboro: Sean Caulfield 508/481-9898 Joyce Henderson 508/485-4040 Medford: Douglas Lloyd 781/324-5759 Mendon: Marlene Fregeau 508/473-0862 Melrose: Valeri McLernon 781/979-3755 Merrimac: Patricia Lavoie 978/803-3296 Methuen: Donna Koski 978/682-3582 Middleboro: Robella Coates 508/946-2490 Milford: Marlene Fregeau 508/473-0862 Millbury: Pat Clark 508/793-0088 Natick: Jan Chiampa 508/655-1000 x21 Judy Sabol 508/650-9003 or Susan Scheib 508/653-3081 Lois Pecora 508/655-5000 x3543 New Bedford: Judith Wilde 508/997-9396 Jenny Nelia 508/998-7807 Newburyport: Patricia Lavoie 978/803-3296 or 465-5361 x25
617/630-2743 North Adams: Beth Hinkley 413/664-4536 North Easton: Marsha Shalek 508/238-7053 Norwood: Victoria Vandalupe 781/762-7700 Palmer: Carol Coiz 413/283-8361 Peabody: Linda Smith 978/531-2254 x137 Pittsfield: Beth Cerow 413/445-2300 Robert Hamilton 413/499-0524 Beth Hinkley 413/499-1992 Ann Maynard 413-442-4978 Plymouth: Evelyn Haight 508/746-7016 Quincy: Kathy Prince 617/471-5712 Reading: Anne Marie Bourque 781/944-1132 or Marie Ammer 781/942-9056 Revere: Bill Nadler 617/284-2872 Rockland: Laureen Walsh 978/878-0095 Saugus: Shelly Peacock 781/233-8123 Scituate: Carolyn Housman 781/837-1513 Somerville: Sara Demetry 617/868-6323 Somerset: Bernadette Mackin or John Rogers 508/679-2240
508/765-9771 Susan Klesczka 508/248-7344 South Lancaster: Harriet Klayman 978/368-6414 Springfield: Ellen Nepomuceno 413/781-5070 Stoughton: Patty Webster 781/344-7300 Sandy Putney 781/821-4990 Christine Bonfiglio 781/297-8211 Carol McLaughlin 781/230-2100 Taunton: Barbara Richards 508/823-4493 Tewksbury: Elaine St. Cyr 978/657-0800 Turners Falls: Molly Chambers 413/773-5555 Wakefield: Lynn Zaloga 781/224-2800 Ware: Stasia Wozniak 413/967-2245 or Heather Jackson 413/867-7716 Wareham: Carolyn Cardoza 508/758-2173 or 508/991-5015 Watertown: Ruth Gordon 617/491-1823 Wayland: Candace Steingisser 508/358-3000 Webster: Carolyn Racicot 508/949-3598 Wellesley: Amy Beck 781/237-6400 Cathy Buckley 781/431-5337 Westboro: Julie Palmieri 508/836-4354 x706 Westfield: Christy Beaulieu 413/568-2341 Ellen Nepomuceno 413/781-5070 Weston: Shirley Earle 781/893-0154 Westwood: Peter Byron 781/326-5652 Weymouth: Kerry O’Malley 781/337-3121 Marsha Frankel 781/340-9100 Williamstown: Fredrica Sloan 413/458-8127 Winchester: Valerie Gramolini 978/897-7455 Woburn: Jennifer Jaroch 781/932-0350 Worcester: Dianne Protano 508/756-7176 Mary Poulin 508/852-0600 Faith Bandama 508/791-5543 Worthington/Cummington: Lucille Temple or Sandra Epperly 413/238-5584
Caregivers of Mentally Retarded Adults with AD Linda Bimbo 781/324-4303 People with Early Stage Alzheimer’s and Their Caregivers Cambridge: Elaine Silverio 508/429-1577 Danvers: Carol Owen or D'arcy Adams 978/774-4 x3064
Natick: (under age 65) Joanne Koenig-Coste 508/879-5338 or Lois Pecora 508/655-5000 Weymouth: Julie Barcelo 781/340-9100 Families of VA Patients with AD Bedford: Jennifer Hill 781/687-2701 Spanish-language Group/En Español Boston: Conchita Rodriguez 617/868-8599 Springfield: Lydia Serrano 413/781-8800 Spouses’ Group Brockton: Geralann DiDomenico 508/427-6099 Youths and Teens North Chelmsford: Susan Antkowiak 978/934-0000 Younger Adult Caregivers: Erin Whalen 617/868-6718 Page 24 Alzheimer’s Association, Massachusetts Chapter Support Groups Support groups provide a forum for family members Alzheimer’s disease to share feelings, concerns and information, and to support each other in cop- ing with the effects of Alzheimer’s disease or one of the related disorders. Each group varies in size and frequency of meeting. Please call the support group leaders listed on this page for further information. For information on support groups on Cape Cod, call the Alzheimer’s Association of Cape Cod and the Islands at 508/775-5656. These groups are open to the public. In addition, many day programs and nursing homes offer groups open to the families of their patients. Support groups are independently run and this listing should not be construed as a rec- ommendation.
978/486-0590 or Jean Fleming 978/264-9643 Agawam: Judy Pothu 413-821-9911 Amesbury: Patricia Lavoie 978/803-3296 Amherst: Shirley Crites 413/548-6800 Andover: Rachel Zalvan 978/623-8321 Arlington: Laurie August 781/316-3400 Athol: Wanda Landry 978/249-3717 Attleboro: Annie Sirois or Patsy Daniels 508/222-6655 or Ginny McDermott 508/222-0118 x2122 Sharon Leary 978/226-6150 Ayer: Patty Arakelian 978/772-1704 Belmont: Debra Katt-Lloyd 617/855-3600 Boston: Brighton, Mary Ellen Peters 617/789-2618 Dorchester, Donna Allen or Eileen Gleason 617/474-1192 Downtown, Stephanie Brett 617/726-2639 or Maureen Tardelli 617/391-7878 Hyde Park, Carol Westheimer or Wendy Marks 781 /455-8588
617/983-2300 Roslindale, Lisa Talayco 617/363-2329 West Roxbury, Susan O’Connell or Stephanie Brinkhaus 617/325-1230
800/870-1800 Braintree: Ailsa LaCoste 781/843-1860 x629 Bridgewater: Jean Giguere 508/697-4368 Brockton: Kerrianne Hanley 508/427-6099 Brookline: Elizabeth Kirsten 617/232-0291 or Howard Block 781/455-8588 Burlington: Sue Mike 781/272-2857 Cambridge: Alice McCarter 617/547-3543 x22 Chelmsford: Pat Keene 978/251-8491 Sandy Simon 978/250-6122 Chicopee: Elaine Mitchell 413/592-7738 Judy Pothul 413/821-9911 Clinton: Laura Beckman-Devik 978/365-7376 Concord: Carol Symonds 781/863-2376 or Nancy Crowley 978/371-3400 Danvers: Lois Stern 978/750-4540 D’arcy Adams 978/774-4400 x3064 Jeanne Parent 978/777-5717 Duxbury: Nancy Lee Strowasser or Sandi Wright 781/585-2397
Ellen Nepomuceno 413/781-5070
508/230-2100 Fairhaven: Sharon Jenson 508/997-3193 Fall River: Nancy Reed 508/679-0011 Paulette Masse 508/379-9700 or Judy Elste 508/675-2101 Fitchburg: Alice Murphy or Joanne Harris 978/343-5368 Ellen Sparrow 978/632-1230 Foxboro: Valerie McKenney 508/543-7336 Framingham: Deborah Young 508/879-8000 Jayne Goldman 508/788-6050 Gloucester: Janett Lavender or Mary Spittle 978/281-1750 Great Barrington: Thoram Kelly 413/528-2650 Hadley: Claudia Benoit 413/584-5057 Haverhill: John Freeman 978/346-4743 or Nancy Savarese 978/683-2771 Fran Eisenman or Pam McCallum 978/469-0169 Hingham: Jo Ann Mitchell 781/749-5417 Eleanor Blair 781/749-4774 Holliston: Lynette Dunn-Nastasi 508/429-3568 Hopedale: Charlene Machnik 508/473-2992 Hopkinton: Pat McKinney 508/435-0222 Kingston: 781/585-4100 Lee: Jennifer Pilcher 413/243-4747 Leicester: Eva Dawson 508/987-8056 Non-Profit Org. U.S. Postage PAID Boston, MA Permit No. 50215 36 Cameron Avenue Cambridge, MA 02140
WORKING FOR A HEALTHY AMERICA Document Outline
Download 410.63 Kb. Do'stlaringiz bilan baham: 
|