Living with ALS Guidebook

The Greater Philadelphia Chapter of the ALS Association is extremely pleased and proud to provide this third edition of a Living with ALS Guidebook. A copy of this guidebook is available at no charge to ALS patients and families in our service area. Additional copies as well as copies for medical professionals are available at our cost. The guidebook is aimed at providing ALS-related information for those living with ALS with an emphasis on local services and resources. 

These documents are provided in .pdf format. You will need to have Adobe Acrobat on your computer to view them.
Click here to download a free version of Adobe Acrobat Reader.


   How to Read this Guidebook
   About the Guidebook
   Disclaimer and Copyright

The National ALS Association (ALSA)

   About the National ALS Association
   The ALS Association Mission, Vision and Values
   ALSA Patient Bill of Rights

About ALS

   What is ALS?
   Recommended Steps after Diagnosis
   ALS and Cognitive Changes: A Guide for Patients and Families
   ALS in the Military
   Local Veterans
   Clinical Trials
   Placebo Controlled Trials
   The National ALS Registry
   Ten Ways to Avoid Being "Quacked"
   Be a Careful Internet User
   Who was Lou Gehrig?

The ALS Association Centers of Excellence

   About the ALS Association Centers
   Description of the ALS Clinical Team

Medical Treatment

   Commonly Used Medications by Symptoms
   Answers to Questions about Rilutek

Symptom Management: Fatigue

   Fatigue and ALS

Symptom Management: Mobility and Pain

   Exercise and ALS
        Click here to view a Range of Motion Upper Extremities video
        Click here to view a Range of Motion Lower Extremities video
   Mobility Equipment
        Click here to view a Standing Pivot Transfer video
   Activities of Daily Living
   Adaptive Apparel
   Hospital Beds
   Swelling of the Feet and Legs
   Pain and ALS

Symptom Management: Swallowing Problems/Nutrition

   How Swallowing Can be Affected in Patients with ALS
   Your Guide to Making a Decision Regarding a Feeding Tube
   Puree Recipes

Symptom Management: Constipation


Symptom Management: Speaking Difficulties/Communication

   Diffculty and/or Slurred Speech
   Augmentative-Alternative Communication (AAC)
   iPads, iTouch and iPhones
   eBook Readers: Accessible book options for PALS (ALSA)

Symptom Management: Secretions

   Secretion Management in ALS
   Oral Care for the ALS Patient by Maureen Reid, RN

Symptom Management: Breathing Issues

   Breathing and ALS
   Respiratory Devices Summary
   Oxygen is not for Hypoventilation in Neuromuscular Disease
   Invasive Mechanical Ventilation
   Respiratory Video Series

Symptom Management: Mental Health Issues

   Coping with ALS
   Coping Cheat Sheet
   Depression and ALS
   Why Come to Support Groups
   Local Resource Groups

Advance Directives

   Making and Documenting Health Care Decisions

Health Care, Insurance, Finances, Employment

   Health Insurance
   Medicare Basics
   Medicare Part D
   Presumptive Disability 
   Home Modifications
   The Ups and Downs of Ramps by Domenic DeMenna, CAPS and Lisa Ann Fagan MS, OTR/L
   Home Care
   In-home care: under 60 years old
   In-home care: over 60 years old
   In-home care: Veterans
   Long Term Care
   Driving Evaluations
   Travel Resources  


   A Caregiver's Bill of Rights
   For Caregivers Coping with Burnout
   Lots a Helping Hands and the Care Connection Program
   Caring About Someone with ALS


   Book Library
   Chat Room and Internet Bulletin Board Resources 
   Ways You Can Help
   Your Children – Guide for Parents with ALS 
   Preparing Children When Illness is Serious – Expert Advice 
   Telling the Children – A Parent’s Story 
   Children Facing Bereavement – Resources
   What ALS Cannot Do


The ALS Association Greater Philadelphia Chapter
321 Norristown Road - Suite 260, Ambler, PA 19002

The ALS Association is a 501(c)3 nonprofit organization and donations are tax deductible to the full extent of the law.