HEALTH & FITNESS

wellness/on the cover

The Will To Overcome

Learning to cope with late-onset Tay-Sachs disease.

Sta ff photos by Ang le Baan

The Signs

Joe Horenstein: "Just before I left, the doctors there gave me one more blood test

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for Tay Sachs disease

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almost as an afterthought."

I

Judith Doner Berne

I

Special to the Jewish News

wo men with late onset Tay-
Sachs (LOTS),
a rare genetic
(LO
disease that is most prevalent
among Ashkenazi Jews, live
within two miles of each other in Metro
Detroit.
Joe Horenstein, 57, is a 6'-5", 190-
pound criminal defense attorney from

Southfield who looks like he plays
sports but must rely on either a cane
or walker to get around.
Mike Subia, 56, is an industrial
salesman from Huntington Woods who
once enjoyed long-distance bicycling,
but now uses a wheelchair.
In fact, both men say even as chil-
dren they weren't athletic.
"I was always tall and thin and
uncoordinated," says Horenstein. "We
always thought I was a wimp."

"I've never been athletic and I was
also kind of unhandy," Subia says,
although he bicycled for about 10
years.
"My legs began to hurt and that's
how I found out," he says.
Both now know they are victims of
LOTS, a variation of the more well-
known infantile Tay-Sachs disease that
causes death by early childhood (see
related story).

Those with LOTS have milder symp-
toms that usually develop in adoles-
cence or adulthood, including trunk
muscle weakness, trembling and trou-
ble with walking, speech and gait.
Although the disease is progres-
sive, it doesn't usually cause death. It
is often misdiagnosed sometimes as
amyotrophic lateral sclerosis (ALS), the
fatal illness that many people know as
Lou Gehrig's disease.
It was Horenstein's older brother Ray
who first identified that something was
amiss in 1994, Joe says.
As a personal injury attorney, "I'm
probably more aware of disabilities
than the average person," says Ray
Horenstein, a Farmington Hills resi-
dent. "I could see there was something
wrong with his coordination."
Ray urged Joe to see a doctor.
One doctor turned into a number of
doctors, since the disease is so rare
that only about 100 cases have been
diagnosed throughout the United States
since it was first recognized in the
1970s.
It took several years of searching
after being misdiagnosed with multiple
sclerosis (MS), Joe Horenstein says.
"I spent four days at the Mayo Clinic
[Rochester, Minn.] undergoing a myriad
of tests. Just before I left, the doctors
there gave me one more blood test
— for Tay-Sachs disease — almost as
an afterthought."
Although it came earlier, Subia's
1988 diagnosis only took three months.
After a referral from William Beaumont
Hospital, Royal Oak, to the ALS Clinic
at Henry Ford Hospital, Detroit, HFH
doctors pinned down a diagnosis of
LOTS.

Getting Around

His symptoms didn't worsen until five
year ago, Subia says. Although he can
walk with support, his main difficulty is
getting up from a seated position.
So it's easier to use a motorized
wheelchair which moves up and down
as well as forward and back. His van

THE WILL TO OVERCOME

on page A28

Febr ar 26 • 2009

A27