UNITED NATIONS - / MaximsNews Network / 11 April 2008 -- It was raining yesterday in Elgin, IL and the girls’ varsity softball game at Westminster Christian High School had to be cancelled. The team’s coach, Jim Mueller, forgot to let the parents know. Instead, a player’s mom spread the word. Any other team might have gotten annoyed, but not in this case. In fact, these players are used to seeing Mueller openly study his notebook in order to remember his coaching drills—and they’re understanding about it.

   Mueller, of Villa Park, IL, relies on lots of support like this to get him through his coaching job, as well as other parts of his day. Despite being only 39 years old, he was diagnosed with Alzheimer’s disease in 2006, and life has not been the same since.

    “The hardest thing is I have to work twice as hard to do normal things that make us look normal,” said Mueller, a father of three girls aged 9 to 14 who gave up his job as a contractor when his memory began failing.

    Facing a disease that primarily affects people aged 65 and older, Mueller and his family are determined to get the word out that this devastating brain disorder, which results in loss of memory and other cognitive functions, can also strike at a young age.

    They will be among the speakers at a conference called “Preparing for the Crisis: Diagnosing & Caring for People in Their 30’s, 40’s & 50’s with Young Onset Alzheimer’s Disease” on April 11 that is being presented by the Alzheimer’s Foundation of America (AFA) and the Sid Jacobson JCC.    

    It will take place from 8 a.m. to 1 p.m. at The Lighthouse Executive Conference Center located at 111 East 59^th St. in Manhattan, and is geared toward doctors, other professionals and family caregivers. For more information and to register, call 866-232-8484.

    It is estimated that about a half million people under age 65—even those in their 30’s, have Alzheimer’s disease or some other form of dementia.  

    Eric J. Hall, AFA’s president and chief executive officer, said AFA has been witnessing more incidences of young onset, evidenced by increased calls about this to its hot line and outreach to its AFA Teens division by children of those affected. AFA recently formed a Young Onset Advisory Board to explore special needs.

    “Healthcare professionals and social service agencies must put young onset on their radar screens,” Hall said. “Alzheimer’s disease poses enormous challenges for anybody, but its onset at a young age intensifies them enormously. In addition to receiving a proper diagnosis, these individuals need help with an entirely different set of emotional, financial and family issues.”

    When asked why he speaks openly about his illness, Mueller said, “I do it because every single pamphlet you look at [about Alzheimer’s disease] has someone with gray hair. I want to show that younger people are getting it, and it’s a reality, and I want to be that person that shows that people can keep going.”

    In addition to Mueller, other individuals with young onset and their families will candidly share their personal stories at the conference—stories that include young children at home, giving up careers in prime earning years, and  facing mounting bills and uncertainty about the future. 

     Also at the conference, top medical experts will provide an understanding of Alzheimer’s disease and treatments, both from a theoretical and practical viewpoint as related to those with young onset.

     In addition, Connie Wasserman, program director of senior services at the Sid Jacobson JCC, will discuss the center’s “Let’s Do Lunch” program, one of the few programs in the nation that is specifically tailored for this population. The program, which has served more than 45 clients since it began three years ago, engages young onset clients in cognitive, social and physical stimulation activities that are functionally appropriate and, most importantly, age appropriate.

     “Our pioneering program for individuals with young onset and their families has given critical visibility to this very often misdiagnosed condition,” said Susan Bender, executive director of the Sid Jacobson JCC. “We believe additional resources on a local, county, state and national level are needed to initiate and expand such programs.”

    Mueller’s wife, Michelle, couldn’t agree more.

    “From the experiences we’ve had, I know that there needs to be more resources available for Alzheimer’s patients with young families,” she said. “It’s been emotionally traumatizing for the whole family on so many different levels.”

    The Alzheimer’s Foundation of America is a nonprofit organization based in New York City that focuses on providing optimal care to individuals with Alzheimer’s disease and related illnesses, and their families, and unites 800 member organizations nationwide that provide hands-on programs. AFA’s services include a toll-free hot line with counseling by licensed social workers, a free caregiver magazine, and National Memory Screening Day.  For information, call 866-AFA-8484 or visit www.alzfdn.org.  

    The Sid Jacobson JCC, based in East Hills, NY, provides comprehensive programs and services for all ages based on Jewish values, traditions, heritage and culture, with the goal of enriching the lives of individuals and families in its community. For more information, call 516-484-1545 or visit www.sjjcc.org.   

Labels: United Nations, U.N., Alzheimer's

 

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