ALS
To speak to an HOV nurse, social worker, chaplain or nurse's aide about patients with ALS, click here. (Responses may take up to 24 hours.)
- Click here to watch a 13 minute video of staff, patients and families talk about the unique needs of ALS.
- Click here to watch a short video of a nurse's aide who gives tips and advice about how to care for an ALS patient.
Amyotrophic lateral sclerosis (ALS) is a progressive neuromotor disease that causes paralysis of the voluntary muscles. It is commonly referred to as “Lou Gehrig’s Disease” after Lou Gehrig, a famous New York Yankees baseball player who died two years after diagnosis. ALS patients have unique needs at end of life. Creativity is often called for, and caregivers should be completely unrushed and “in the moment” as they assess, intervene and reassess.
With ALS, the nerves (motor neurons) that send messages (impulses) to the voluntary muscles die. The breakdown in communication between the brain and muscle eventually causes paralysis of the affected muscles.
ALS affects the voluntary muscles of the body, not the involuntary muscles. People can voluntarily move their extremities, smile, speak, chew and swallow food, but not voluntarily change the rate of their heartbeat or slow their digestive process. The muscles that regulate breathing can be controlled and therefore are affected by ALS. Muscles that control eye movement and the external sphincters (bowel and bladder control) are rarely involved in ALS. Other areas not affected are internal organs, sexual functions, and the five senses (sight, hearing, smell, touch and taste). Until recently it was believed ALS did not affect the brain’s function (cognitive function). Recent studies have shown that some patients with ALS experience changes in thinking and behavior. Click here to learn more.
Living with ALS means continually coping with changes. Changes in mobility, eating, and breathing requires the person to make many decisions that go beyond physical aspects of the illness, such as:
- Family life and socializing
- Work
- Adaptive devices
- Living accommodations
- Caregivers
- Intimacy/sexuality
- Advanced directives
Feeding tube
Tracheostomy/Ventilator
ALS patients face complicated decision-making as they assess whether to stay alive with mechanical support or to die as the disease naturally progresses.
Jane Irvine, RN, director of home health and extended care at Hospice of the Valley, reflects here on the death of her mother from ALS nearly 40 years ago.
Hospice of the Valley recognizes the complexity of these decisions and their physical, emotional, and spiritual impact. Many patients who come to Hospice of the Valley have been receiving superb care managing their illness. Hospice care is the final stage, marked by an emphasis on comfort. With expertise and an understanding of ALS, hospice team members can support and guide the patient and family through this challenging time.
Resources
Articles
A Guide to ALS Patient Care for Primary Care Physicians
Clinical Care for Patients with ALS
Interdisciplinary Palliative Care for Patients with ALS
Benefits
Veteran's Administration Benefits
On September 23, 2008 Congress passed legislation saying ALS is a disease now considered to be service connected. Veterans with ALS are entitled to benefits from the Veteran's Administration of $3,000 or more a month for private duty caregivers. Additionally, grant money is available to adapt a patient's home to meet care needs and to obtain or renovate a van for transport (up to $11,000). The first step is to contact Paralyzed American Veterans of America, a non-profit organization, 602-627-3311. They will send out a representative to help the veteran and family fill out forms. The process takes 30 to 60 days. An HOV patient is collecting more than $7,000 a month from the VA to help pay for the private duty care he needs.
Documents
These documents were prepared by Hospice of the Valley staff members to assist you in caring for patients with ALS. To contact an HOV staff member, click here.
Cognitive Impairment
Psychological and Emotional Considerations
Pulmonary Information
Pulmonary Equipment
Spiritual Care
Recommended Links
Informational
ALS Association
The ALS Association Arizona Chapter
Muscular Dystrophy Association
National Institute of Neurological Disorders and Stroke
American Academy of Neurology's ALS Site
The ALS Hope Foundation
Support
Patients Like Me is a website for patients and their families to share their stories and provide support to one another.
LICA (Life Threatening Illness Charity of America) is a support website for patients and families.
Living with ALS is a site dedicated to helping make life easier for ALS patients - created for patients by patients.
Patient Testimonial
Meet one of our inspiring patients with ALS and hear his story.
Mark Wenzel
Recommended Reading
For a detailed list click here.
Informational
- Amyotrophic lateral Sclerosis (American Academy of Neurology) by Robert G.Miller, Deborah Gelinas, and Patricia O’Connor
- Amyotrophic Lateral Sclerosis: A Guide for Patients and Families by Hiroshi Mitsumoto and Theodore L. Munsat
- Communication and Swallowing Solutions for the ALS/MND Community: A CINI (Communication Independence for the Neurologically Impaired) Manual by Marta S. Kazandjian
- Diseases and Disorders – Lou Gehrig’s Disease by Melissa Abramovitz
Patient Testimonials
- I Choose to Live: A Journey Through Life with ALS by William Sinton
- I Remember Running: The Year I Got Everything I Ever Wanted – and ALS by Darcy Wakefield
- If They Could Only Hear Me: A collection of personal stories about ALS and the families that have been affected edited by Ed Rice
- Journeys With ALS: Personal Tales of Courage and Coping with Lou Gehrig’s Disease edited by David Feigenbaum
- Count Each Day: A Son's Heroic Journey with ALS By Nathalie Ketterer
Caregivers
- American Medical Association Guide to Home Caregiving by the American Medical Association
- The Comfort of Home: A Complete Guide for Caregivers by Maria M. Meyer and Paula Derr
- The Fearless Caregiver: How to Get the Best Care for Your Loved One and Still Have a Life of Your Own by Gary Barg
- Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill by Cappy Capossela and Sheila Warnock
- The Dysphagia Cookbook: Great Tasting and Nutritious Recipes for People With Swallowing Difficulties by Elayne Achilles
- Easy-to-Swallow, Easy-to-Chew Cookbook: Over 150 Tasty and Nutritious Recipes for People Who Have Difficulty Swallowing by Donna L. Weihofen, JoAnne Robbins, and Paula A. Sullivan
|
