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ALS
(Amyotrophic Lateral Sclerosis) also known as "Lou Gehrig's Disease"
is a neuromuscular disease that results in paralysis of the muscles.
These are the muscles in the arms, legs, and those for speaking,
swallowing, and breathing.
This disease changes the lives of the entire family. The loved ones
of patients become caregivers without having ever been trained. They
learn by trial and error. They now have a job 24 hours a day, 7 days
a week that consists of: doing or supervising the dressing, feeding,
bathing, medicating, and even the breathing of these people with
whom they once shared everyday chores. They have to be interpreters
because other people can't understand the patient's speech and at
some point find other ways to communicate because they can't either.
There are organizations that will provide assistance but the
caregivers of patients with ALS are so busy just trying to get by
day by day that they need help and support in finding those
organizations.
The ALS Family Support Group of Ohio, Inc. tries to lighten the load
of the patients and their loved ones living with this horrible
disease.
Phyllis Van Horn
You Are Not Alone
The diagnosis of ALS is obviously most distressing and often
unbelievable to the otherwise healthy person who is not suffering
any pain. Unfortunately, this news is exacerbated by the additional
report that there is no cure and little hope.
These dreadful thunderbolts are accompanied all too often by the
added distress of dealing with a physician who feels that handling
the future problems of this difficult disease is futile and thus
outside the focus of his interest. Too often, the distraught patient
and family are hurried out of the physician's office door with the
admonition that there isn't anything further to be done and
therefore no need for the patient to call him. Many ALS patients say
they literally didn't know what to do next.
This is the time for the newly diagnosed patient and family to
become aware that there is an ALS support group available. This
group can provide the information necessary to comprehend the
vagaries of this disease, present options on dealing with the
difficulties of living with it, and help families feel as if they
are actively participating in their own care.
A support group can show the new ALS patient and his family that
they are not the first to have to deal with ALS, that there are
others, like themselves, who are living with this disease. Knowing
that you are not alone can be encouraging.
The structure of a support group can take many forms. Some have
found that selecting certain patients for closed regular meetings
over a set period of time, conducted under the guidance of
professional social workers, is the optimal way to benefit the
patients and their families. Our experience has shown, however, that
patients and families are less interested in dealing directly with
their feelings and those of other distraught members than they are
in obtaining as much information as possible about the disease
itself, both from experts and from other patients and families who
have been coping successfully over relatively
long periods of time.
We have found that all ALS patients and families will not attend the
support group, either because they wish not to discuss their disease
in front of others, or perfer to deny the reality of the diagnosis,
or wish to deal with this problem in their own way. It is amazing
how the regular attendees will welcome and embrace newcomers,
enveloping them in the camaraderie of the group, and encouraging
them to come to future sessions.
The value of a support group for ALS patient and families cannot be
overstated. It uniquely fulfills needs in this society that large
extended families used to fill: solace, comfort, and understanding
in times of intense and ongoing stress. Until we can offer these
patients the hope of a cure, we must rely upon the psychology and
humanity of support groups to help ease the burden placed upon them
by this devastating disease.
Delores Holden, RN
ALS Research Center
Pacific Presbyterian Medical Center
San Francisco, CA
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