Amyotrophic Lateral Sclerosis

ALS, Lou Gehrig's, 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

I have had the privilege of sharing the ALS journey with many people. People like you & I who find life suddenly changed in an instant with the diagnosis of ALS. Amyotrophic Lateral Sclerosis becomes an "initiation," a call to draw from deep within the perseverance & grace to be in the present moment with a neurodegenerative process.

The moments I share beside PALS (people with ALS) allow me to witness the immense courage, tremendous strength, & undaunting spirit that arises through the process of living each day fully regardless of the ALS shift taking place. Finding the balance of privacy, relationship, joy, & integrating caregivers is crucial. Bearing witness to this process is one of the blessings of my life.


DEVELOPING OUR NURSING RELATIONSHIP

Having been beside many people with ALS I have a grounded sense regarding the process of how Lou Gehrig's Disease unfolds, including its many different ways of showing itself. Our focus is to be pro-active with each phase, each symptom, to allow the "softest" disruption possible. The focus is not the illness but you & your family, & easing the transition points through knowledge & awareness of ALS. Those with the diagnosis of amyotrophic lateral sclerosis and their families share many frustrations regarding the immense time & effort it takes to discover what is taking place in their bodies & how to work with those changes. There is often a lack of understanding with those who are unfamiliar with ALS in the health care field.

I am available to work with you in the role of private duty nurse. I care for your body, however my focus is not limited to just your physical needs, rather toward body-mind-spirit & healing as you transition through living with ALS. Healing with ALS is the process of bringing parts of yourself (physical, mental, emotions, spirit, relationships, and choices) together at deep levels of inner knowing, leading to an integration & balance, leading to a peaceful, conscious transition. This does not mean transition is easy, however it means we face it together as you enter into the death process.


"And Death is our sister, we praise Thee for Death,
Who releases the soul to the light of Thy gaze,
And dying we cry with the last of our breath
Our thanks and our praise."

-the dying words of St. Francis of Assisi


There are many resources available. I can help integrate the numerous non-for-profit organizations available to assist you with obtaining equipment & volunteer assistance. As the time comes to include hospice care, I can assist with setting up hospice "informational" visits by the 3 or 4 local hospice organizations so you can find the hospice team which most suits your nature & your needs. Although all hospice organizations follow the same protocols, they have varied unique expressions of those protocols.
I accompany you to your home, hospital room, nursing home, or hospice; staying by your side as much as desired to offer my expertise & comfort. I attend or transport you to doctor appointments as a voice of experience to make sure "your" voice is heard & "your" questions answered. We discuss in lay terms what the medical profession is saying to you so that you can be fully informed & make choices from your own knowledge. Your quality of life, what you want & need on this journey, is our focus. I assist your primary caregiver/spouse/family in organizing care so that it can be done with the least effort & greatest safety. I am available to allow your family several hours or weeks of respite care to relax & regenerate. We work together. I can be with you for shift work or brief nursing visits. You, your family, all the resources available & myself create a plan together. The process is different for each person & often changes as time proceeds.

There are many symptoms with ALS that can be managed to allow you a more comfortable quality of life. There are pros & cons to be looked at regarding feeding tubes & BiPAPs for nutrition & breathing. We can evaluate how to titrate medications with your doctor to best allow you to be free of pain & anxiety yet aware & awake. Clearly deciding how you want your final passage to look & documenting that in your advance directives is another area I can assit you with. We will spend as much time as needed exploring options & coming to peace with approaches which help you have more energy to do what you enjoy each day.

Timing is important with ALS & with a routine nursing assessment we can be pro-active in knowing the best time to contact your doctor for equipment, treatments & medications. Continuity of care means I know you well & see when small changes take place that we can meet graciously & promptly.

I assist with nutritional approaches that have worked well with PALS. Simple diet shifts that provide food in a consistency you can enjoy as long as possible & the ability to help give you overall energy & counter constipation. We can add nutritional supplements wich are food based to allow less dependance on chemical medications with their numerous side effects.

I can assist you in bringing in staff who are ALS trained including personal care addendants, CNA's, LPN's, and other RN's if you find your primary caregiver/family needs more assistance.

Relaxation, healing touch, essential oils, prayer, meditation, quiet times, reading sacred texts....however you need my assistance I am available.

I can accompany you as your private nurse to anywhere is the USA or beyond to help you fulfill those longings to visit family or see this beautiful world. There are many beautiful, refreshing locations which are barrier free, and vans can be rented & sometimes covered by insurance for transportation.

Update 4/2009
Some insurance plans cover home health skilled nursing costs. My current fee is $30/hour with a 2 hour minimum.


INFORMATION ABOUT ALS INCLUDING BOOKS, LINKS & WEBSITES




It is important to know that some PALS have found means to slow the progression of degeneration. This is a complex illness with many unknowns. This mystery, these unknowns, leave much room for hope & open questioning. Stay open to your own inner wisdom, perhaps you will offer an answer to unlock this puzzle. Listen to your dreams & notice your longings...see where they lead you.


ALS is a neurodegenerative disease. The underlying causes that trigger the degenerative process remain under investigation. Current research hints at genetics combined with toxins. New research questions the role of head injuries, smoking & military service in ALS. Amyotrophic Lateral Sclerosis 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, leg or the tongue.


ALS is 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 cause increasing disease.

ALS is not easy to diagnosis. The symptoms are varied and there is no one test to confirm it is ALS. Several other neurological problems have similar signs & symptoms. As other disorders are ruled out & neurological exams are performed by a neurologist the determination is finally made. An electromyography (EMG) can show the denervation, muscle wasting, & atrophy that go with ALS & helps with the diagnosis.

LINKS to help answer your questions:

The Amyotrophic Lateral Sclerosis Society of Canada has put out a wonderful publication for physicians. Please go to this link & print out this guide for your physicians & health care providers, make sure to look at the great resources also available on their website:

PHYSICIAN GUIDE

Stephen Hawking

Compassionate Care ALS

ALSA Rocky Mountain Chapter

Extra Hands ALS

ALS Tutorial

ALS/MND

National Institute of Neurological Disorders ALS fact sheets

Project ALS

Mass General Institute For Neurodegenerative Disease


HELPFUL BOOKS ABOUT ALS:

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

ERIC IS WINNING Beating a Terminal Illness with Nutrition, Avoiding Toxins and Common Sense. Eric Edney. Xlibris Corporation. 2006.

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.

Maya Ananda RN ph 303-817-9503 fax 303-666-8248

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