Introduction
If you’re reading this guide, you’re
probably already in the early stages of what may be the
most difficult journey of your life. It’s a journey that
may be relatively short or may last several years. Either
way, as someone caring for a person with ALS, the trip will
be trying.
The purpose of this guide is to
help smooth the rough road and allow you to experience the
profound joys that are still very possible along the way.
Because, while caring for a person with ALS is a real chore,
it also has its rewards, both emotional and spiritual.
Our hope is that you’ll be better
able to recognize and enjoy those rewards with the help
and direction you receive through this publication and the
other sources of assistance it offers. This guide isn’t
meant to be all-encompassing; there are simply too many
topics and too many details involved in ALS care to cover
them all here. Rather, When a Loved One Has ALS should
serve as an overview that gives you a broad picture of what
lies ahead, a sampling of ways to overcome problems and
a resource to help you find additional help when you need
it. You’re not the first person to be in this situation
and, unfortunately, you won’t be the last. But, since caring
for a loved one with a debilitating disease is nothing new,
you have the valuable experiences of others to draw upon.
For simplicity, we’ve referred to
the person with ALS as "he" throughout, although
the information in this guide is relevant regardless of
the gender of the patient or the caregiver.
One key thing to remember, not only
while reading this guide but throughout your caregiving
experience, is that you’re not in this alone. Since ALS
is one of the more than 40 neuromuscular diseases in MDA’s
program, you have an organization with more than 50 years
of experience to back you up. The Association has spent
more than $160 million on ALS services and research. That
translates into help and hope for people with ALS and their
loved ones. We stand ready to assist you, with the most
comprehensive ALS services of any nonprofit agency in the
country, and we continue to lead the world in sponsoring
ALS research.
This guide is a continuation of
that history of caring about and offering help to ALS families.
We recognize that ALS doesn’t just attack the person with
the disease. It has a profound impact on everyone who cares
about him, especially the primary caregiver. That’s why
this guide doesn’t focus solely on caring for the patient.
It also addresses your needs as a caregiver.
So, as you make your way down the
path you’ve chosen out of love and compassion for another,
remember to love and care for yourself as well. And never
forget that, on this journey, you never have to walk alone.
NOTE ON THE SECOND EDITION
The first edition of When a Loved
One Has ALS, published in 1997, was made possible by
a grant from the pharmaceutical company Cephalon. MDA was
also assisted in preparing the first edition by the late
Vicki Appel, BSN, then coordinator of the Ronny & Linda
Finger MDA/ALS Center at Baylor College of Medicine in Houston.
The second and revised second editions
reflect new findings in ALS research and updated lists of
resources.
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