Legacy to a Friend

A
Legacy to A Friend

By
Leslie Schwartz

Amyotrophic
lateral sclerosis (ALS), often referred to as “Lou Gehrig’s
disease”, is a progressive, fatal neuromuscular disease that
attacks nerve cells and pathways in the brain and spinal cord. Motor
neurons, among the largest of all nerve cells, reach from the brain
to the spinal cord and from the spinal cord to the muscles throughout
the body with connections to the brain. When they die, as with ALS,
the ability of the brain to start and control muscle movement dies
with them. With all voluntary muscle action affected, patients in the
later stages are totally paralyzed; yet through it all, their minds
remain unaffected.

ALS
is one of the most devastating of disorders which affects the
function of nerves and muscles. According to current data, the
incidence of ALS is about 6-8 per 100,000 population. Thus, some
5,000 people in the U.S. are newly diagnosed with ALS each year.
(That’s about 15 new cases a day!) It is estimated that as many as
30,000 Americans have the disease at any given time, and that some
300,000 men and women who are alive and apparently well in the
country today will die with ALS unless a cure or prevention is found.

With
recent advances in research and improved medical care, many ALS
patients are living longer and more productive lives. Half of all
affected live at least three years or more after diagnosis. Twenty
percent live five years or more; up to ten percent will survive more
than ten years. Early symptoms vary with each individual, but usually
include tripping, dropping things, abnormal fatigue of the arms
and/or legs, slurred speech, muscle cramps and twitches and
uncontrollable periods of laughing or crying.

The
hands and feet may be affected first, causing difficulty in walking
or using the hands for the activities of daily living such as
dressing, washing and buttoning clothes.

As
the weakening and paralysis continue to spread to the muscles of the
trunk of the body, the disease eventually affects swallowing, chewing
and breathing. When the breathing muscles are attacked, the patient
faces permanent ventilatory support in order to survive.

Since
ALS attacks only motor neurons, the senses of sight, touch, hearing,
taste and smell and muscles of the eyes and bladder are generally not
affected. The mind is not impaired and remains sharp despite the
progressive degenerating condition of the body.

Although
there is not yet a cure for ALS, much can be done not only to help
patients live with the disease, but live more productively and
independently. The concept of ALS as a hopeless disease is fast
giving way to an approach that emphasizes the treatment of a
patient’s symptoms. This can improve the quality of life for the
patient and help him or her develop a positive attitude about being
part of the management care team.

Unlike
some people, Nancy Wright of Annapolis, MD received a quick diagnosis
of ALS. Her symptoms began with a drop in her big toe, followed by
stumbling and ultimately tumbling to the ground. Mrs. Wright weakened
quickly and in a matter of months went from using a cane, to a walker
to a wheelchair. Mrs. Wright’s daughter, Nancy Kriebel, and her
friends sent Mrs. Wright a magical-looking wand. The wand was a
symbol of the faith, love, courage, spirit and dream that one day
there would be a cure for this devastating disease. The group wanted
to do more. They wanted to increase awareness of the disease and the
free programs provided by the ALS Association – DC/MD/VA Chapter to
local patients and families. Ultimately, they wanted to find a cure.

Now
in its 14th
anniversary year, the ALS Artisan Boutique has raised over $300,000
and touched countless families. This year’s event will be held on
Sunday, December 4, 2016 at the Crowne Plaza Annapolis (formerly the
Sheraton Annapolis Hotel) from 10am-5pm. The event is free and open
to the public. Over 55 regional artists will offer handcrafted
jewelry, original children’s clothing and accessories, pottery,
paintings and more. In addition to the artisan offerings, the event
will include door prizes, raffles, a silent auction, refreshments and
an appearance by Lisa McCue, an illustrator of children’s books,
including the Corduroy series. Books will be available for signing.
If you cannot attend but would like to help, donations can be made to
the ALS Association and sent to 1221 Buckingham Road, Arnold, MD
21012. For more information, e-mail
HYPERLINK "mailto:leslieschwartz3@gmail.com"leslieschwartz3@gmail.com

ALS
is a devastating and always fatal neuromuscular disease. Unless a
cure is found, over 300,000 Americans living today will die from ALS.
The financial cost to families of persons with ALS can be up to
$200,000 per year, depleting the entire savings of patients and their
families.

The
ALS Association is the only national not-for-profit voluntary health
organization whose sole mission is to find a cure for amyotrophic
lateral sclerosis (LOU GEHRIG’S DISEASE) as well as improve living
with ALS. For more information, call the ALS Association301-978-9855
or visit
HYPERLINK "http://www.alsinfo.org/"www.ALSinfo.org.