Introduction
Receiving a diagnosis of amyotrophic
lateral sclerosis (ALS) will unquestionably alter your life
in almost every aspect.
You should remember, however, that
no one knows exactly how you personally will be affected by
the disease or how rapidly it will progress. Statistics can
shed some general light on what you can expect from ALS, but
they can’t predict the course of ALS from person to person.
Nonetheless, it’s daunting
to know that as the disease progresses it will have practical
effects on your everyday life. These can range from complicating
simple tasks like fastening buttons to limiting major abilities
like speaking and breathing.
Using the Guide
This guide should be used as an
integral part of your individualized care program, and provide
guidelines to optimize your strength, function, physical comfort
and safety. It should be read along with guidance from physicians;
physical, occupational, respiratory and speech therapists; and
other health care professionals. A team approach is best in
managing ALS, with you as the team captain.
In practical terms, you may find
that you need some assistive equipment right away, and you may
not need other items for months or years after your diagnosis.
In the same practical vein, some items require extra time for
ordering, customizing and funding (power wheelchairs are a prime
example).
SPECIAL
NOTE: Because there are so many choices and the course
of ALS is somewhat unpredictable, professionals strongly urge
you to consider your future needs while you can do so at your
leisure. Part-time use of some interventions early in the disease
course can make the transition to full-time use easier and save
a great deal of your energy and strength.
MDA understands that, along with
a need for practical solutions, ALS brings a host of emotional,
family and financial concerns that are threaded through every
stage of progression. We hope this guide to everyday life will
give you and your loved ones specific details you need to understand
choices, make decisions and plan ahead — steps that will
help you to maintain control over your life and adjust to the
progression of ALS.
Remember, too, that the Muscular
Dystrophy Association is a resource for medical care, emotional
support, financial assistance, up-to-date information, equipment
and hope. Keep in close touch with your local MDA office and
clinic. You’ll also find help in another MDA book that
supplements the information in this one: When
a Loved One Has ALS: A Caregiver’s Guide.
Spotlight
on Your Health Care Team
Having ALS will eventually affect the
totality of your being; that is its nature. Consequently,
you should prepare to confront ALS on many different fronts
— physical, emotional, financial, practical and
more. To help you meet those challenges you’ll want
to rely on an array of people who can provide you with
the support of every available resource; these experts
will form your health care team, and you’ll be the
captain.
As the disease progresses and affects
the way you function daily, the members of your health
care team to whom you turn will vary; your MDA/ALS center
or MDA clinic can help you establish the medical membership
of this team. In addition to your personal physician,
an MDA clinical director who’s a specialist in ALS
will consult with you and the rest of the team, which
may comprise such experts as a pulmonologist, a cardiologist,
a gastroenterologist, a nurse, a speech-language pathologist,
a respiratory therapist, a physical therapist, an occupational
therapist, a dietician and a social worker — and
any other members you may need to call upon. Other members
of your health care team may include a psychologist or
family therapist, and an MDA health care service coordinator
or other representative of MDA.
You should also think of your caregivers
at home as part of your health care team. They, too, will
help you meet the daily challenges of ALS.
Throughout this book, you’ll learn
more about the members of this health care team and what
they can offer as you face everyday life with ALS. Your
entire team will work with you to ensure that you remain
as healthy and as able as possible to live the life you
choose to live with ALS.
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