Reflections on Living with Early Stage Memory Loss
There’s a new face of Alzheimer’s, and judging by the
number of those with early stage Alzheimer’s who
participated in this year’s forum, there is an increasing
population holding steady in the early stage for six,
seven, eight or more years. Medications help them to
thrive, along with social networks and support groups
tailored to their concerns.
The sellout
crowd at The Roosevelt Hotel on
April 11 may be attributable to
Alzheimer’s higher profile in the
media, suggested Chapter President
and CEO
Lou-Ellen Barkan in her
welcoming remarks. Then Thomas
Hendricks, a member of an early stage
support group shared his credo, “not
to let tomorrow kill today.” Jed Levine, the NYC Chapter’s
Director of Programs & Services,
introduced David Shenk, author of
“The Forgetting,” an important book
that became a PBS broadcast. |
Keynote Speaker David Shenk |
He
saluted those early stage people who
are aware, able to fight, and take part in
decisions affecting them. In the past,
he noted, few lived long enough to
develop Alzheimer’s, although the
malady was mentioned in literature
by Homer, Plato, Aristotle, Chaucer
and Tolstoy, all before Dr. Alois
Alzheimer gave the syndrome a name
100 years ago. Shenk sees the aging of
the baby boomers en masse as a
major reason to seek increased federal
funding for research.
After taking a moment to remember
the late Frank Carlino, whose AD
spurred him to action and advocacy,
Susan Goldfein, Ed.D., Early Stage
Forum Coordinator, moderated a
discussion among William Deutsch,
Margaret Henighan, Anthony Laureano
and Natalie Post (early stage support
group members) and facilitated by
support group leaders Elizabeth Fine
and Paulette Michaud.
The group is a safe harbor, as they
are non-judgmental and empathy
abounds. Members share problems as
well as coping strategies. All these
member-speakers are on Aricept,
Exelon, Razadine and/or Namenda.
They don’t go out of their way to
share their diagnosis. As Ms.Post commented,“
I cannot bear the thought of
losing it; it’s scary.”
The attendees then had a choice
of six workshops to address specific
concerns. In the one called “Our
Toughest Challenges,” we heard from
Mary Carver, who was fired when she
told the boss she had AD. With early
onset AD, lapses are more likely to be
picked up at work than by the family.
Early Stagers told us that communication
must slow down a bit, and they
do better scheduling fewer activities.
Loss of initiative is common in early
stagers. It’s hard to get them started, so
they need extra patience from those
they are interacting with. Ask early
stagers if they need help—don’t just
make all the decisions for them.
After luncheon, everyone reconvened
for a discussion of “Participating in
Research: What’s in it for me?” Mary
Sano, Ph.D., Professor of Psychiatry,
Director of the AD Research Center,
Mt. Sinai School of Medicine, and
Director of Research and Development,
Bronx VA Medical Center took the lead
in enumerating current treatments, as
well as discussing experimental medications
which are or will be clinically
tested soon. The benefits of participating
were laid out: standardized
evaluations, access to up-to-date
research initiatives and earliest access
to new medications. There is also
family support in these studies and the
altruistic notion of making a contribution
to science for the greater good.
Lou Ellen Barkan was on the panel
as one who had joined the research as
a control subject, and found it
“extremely interesting.” Jill and Richard
Kushel reflected on their experiences
as well. (Info on trials may be found by
calling Mt. Sinai at 212-241-8329,
Columbia at 212-305-1818, NYU at
212-263-8088 or the NYC Chapter
at 800-272-3900.)
At the end of the day, one participant
found “a full lack of fear about
Alzheimer’s after this conference.”
Clearly, support and medication can
prolong the time early stagers remain
in the early stage.
— Chris MacLeod
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Dr. Mary Sano, Jed Levine, Richard & Jill Kushel and Lou-Ellen Barkan |
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Early Stage Forum participants |
Early Stage Support Group |
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| Click here to view our entire Early Stage Memory Disorders Forum and other Chapter event photographs. |
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