AKA Lou Gehrig's or Motor Neuron Disease

Be patient toward all that is unsolved in your heart and try to love the questions themselves like locked rooms and like books that are written in a foreign tongue.
Ranier Maria Rilke

The following LINKS can help answer many of your questions:

ALS Tutorial

ALS/MND

National Institute of Neurological Disorders ALS fact sheets

Project ALS

Zen Hospice

Mass General Institute For Neurodegenerative Disease


I have had the privilege of sharing the ALS journey with numerous incredible people. The moments I shared beside them allowed me to witness the immense courage, tremendous strength, & undaunting spirit that arose as they struggled to live fully through their remaining precious moments. Bearing witness to their "living" is one of the blessings of my life.

ALS is a neurodegenerative disease. The underlying cause or causes that trigger the degenerative process remains unknown. ALS is a serious neurological disease that attacks the nerve cells that control voluntary muscles. It may begin with muscle twitching or weakness in an arm or leg, or with slurring of speech. ALS is thought to be one of a "family" of neurologic diseases. Other members of this family are Alzheimer's, Huntington's & Parkinson's disease. In this group of diseases a certain type of nerve cell begins to degenerate and gradually and steadily causes increasing disease. ALS is a progressive, fatal disorder. Eventually, amyotrophic lateral sclerosis affects your ability to control the muscles needed to move, speak, eat and breathe. ALS usually leaves intellect intact and spares the senses of sight, hearing, smell, taste and touch. It doesn't affect involuntary muscles, such as the muscles that control heartbeat and bladder and bowel function.

There is much to be offered that allows for comfort & meaning through the stages of ALS. Research with regards to the disease process is going strong. Support exists through the ALS Association, local support groups, & the various Hospice organizations. You are not alone, current estimates are that between 20,000 and 30,000 Americans are living with ALS.

Here are some books to consider adding to your library regarding ALS:

AMYOTROPHIC LATERAL SCLEROSIS. Robert G. Miller, MD; Deborah Gelinas, MD; Patricia O'Conner, RN. AAN PRESS. American Academy Of Neurology 2005.

AMYOTROPHIC LATERAL SCLEROSIS A Guide for Patients and Families. Hiroshi Mitsumoto, MD and Theodore L. Munsat, MD. Second Edition. DEMOS Medical Publishing. 2001.

JOURNEYS WITH ALS Personal tales of courage and coping with Lou Gehrigh's disease. Compiled by David Feigenbaum. DLRC Press. 1998.

THE OFFICIAL PATIENT'S SOURCEBOOK On AMYOTROPHIC LATERAL SCLEROSIS A revised and updated directory for the internet age. James N. Parker, MD and Philip M. Parker, Ph.D., Editors. A reference manual for self-directed patient research. ICON Health Publications. 2003.

You can contact ALSA (ALS Association) Rocky Mountain Chapter in Denver, Colorado for more information 303-832-2322 or visit their website at www.alsaco.org

I am available to provide private duty nursing care to patients in the Boulder/Denver area with ALS. Please call 303-817-9503 for more information. Much Love, Maya RN,MA

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