ALSA’S Living With ALS Manuals
The ALS Association’s Living With ALS manuals, published in the Spring
of 1997, reflect recent improvements in the overall care of the ALS patient
and advancements in symptomatic and therapeutic treatments. The manuals
are designed to inform and educate people about ALS in a comprehensive
and easily understood format. They address many of the common concerns
and questions expressed by persons living with ALS.
Topics covered in the manuals include:
1. What’s It All About? This manual provides an overview
of ALS, what it is and how it affects your body. It also provides
information on what kinds of resources are available to help you deal with
ALS more effectively.
2. Coping with Change. This manual addresses the psychological, emotional and social issues that you must deal with when your life is affected by ALS.
3. Managing Your Symptoms and Treatment. This manual discusses the symptoms that can occur when you have ALS and how to treat them. It also covers the most recent breakthroughs in medications and how these treatments can improve the quality and duration of your life.
4. Functioning When Your Mobility Is Affected. This manual covers the spectrum of mobility issues that occur with ALS. It specifically discusses exercises to maximize your mobility as well as how to adapt your home and activities of daily living to help you function more effectively.
5. Adjusting to Swallowing and Speaking Difficulties. This manual discusses how your speech can be affected by ALS. It covers specific techniques and devices available for improving communication. In addition, swallowing difficulties and how to maintain a balanced diet are also covered.
6. Adapting to Breathing Changes. This manual explains how normal breathing is affected by ALS. specifically, it explains how to determine if you have breathing problems and what options are available to assist you as your breathing capacity changes.
HOW TO ORDER
The manuals are available through ALSA’s National Office Patient
Services Department (800-782-4747) at no cost to ALS patients.
The Patient Services Department suggests that you order only the manuals
you currently need. As new needs begin to arise, then order the next
appropriate manual(s).
Activities at the Center
A sincere “Thank You” to Mr. & Mrs. A. Martines for their thoughtful gesture toward the Neuromuscular & ALS Center on the occasion of their 50th wedding anniversary. Mrs. Martines, who has ALS, recommended to friends and family that contributions be sent to the Center in lieu of anniversary gifts. Thanks to the kindness of the Martines family and their many friends, a very generous donation was forwarded to the Center for the continuation of patient services and education.In May, 1997, the drama students of Somerville High School performed Li’l Abner as their yearly major performance. The students generously donated the proceeds of one night’s performance to the Neuromuscular & ALS Center. In October, 1997, six of the students visited our Center for a “hands-on” meeting with our clinical team. They were accompanied by their drama teacher (and school psychologist), Mark Beckman, their principal, Mr. Timothy O’Halloran, and the Superintendent of Somerville Schools, Dr. Carolyn Leary. Our Somerville guests learned a lot about ALS and Lou Gehrig. The visit was highlighted by the presentation of a $1,000 check to the Center. We thank the students and staff of Somerville High School for their interest in our research and patient care activities.
On
May 20, 1998, Mr. John Petersen of Bound Brook, NJ, hosted an education
and fundraising program in memory of his wife, Frances, who died of ALS
in January, 1997. This was the second fundraising event organized
by Mr. Peterson and the people of Bound Brook, with proceeds earmarked
for research and patient services at the Neuromuscular & ALS Center
of Robert Wood Johnson. The audience exchanged conversations with
members of the ALS Team and attended an educational presentation on ALS
given by Mary Bergen, RN.
Dr.
Jerry Belsh presented a brief slide-illustrated talk on “Notable People
with ALS”. He then presented Mr. Petersen (left) with a copy
of the book, Lou Gehrig: The Luckiest Man by David Adler (see
review in this newsletter), as well as a copy of Amyotrophic Lateral Sclerosis:
Diagnosis and Management for the Clinician edited by Dr. Belsh and his
pulmonary colleague, Dr. Philip Schiffman. Mr. & Mrs. Bill
Harwood (right) also received a copy of the book on Lou Gehrig in recognition
of their major contribution to the fundraising effort.
We thank Mr. Petersen, Mr. & Mrs. Harwood, and the people of Bound Brook for their continued commitment toward enhancing ALS patient services and finding a cure for ALS.