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Coping with ALS

How to Cope with ALS by: Morrie Schwartz

A philosophy professor at Brandeis University who realized and shared his views on life while dying of ALS. Schwartz was interviewed several times by Ted Koppel on "Nightline", and he is the subject of the New York Times bestseller "Tuesdays With Morrie" by Mitch Albom. Schwartz himself wrote a book before he died called "Letting Go" Morrie's Reflections on Living While Dying.

  1. Develop the capacity to accept gracefully the things you are not able to do.
  2. Reminisce about the past, but don't live in it. Remember the past with warm feelings.
  3. Be occupied or focused on things and issues that are of interest to you. Remain passionately involved in them.
  4. Take in as much joy as you can whenever and however you can. You may find it in unpredictable places.
  5. Maintain your composure with high spirits, inner peace, self respect, and self esteem.
  6. See and accept yourself as part of nature. Remember that it is natural to conclude your living by dying. Accept your mortality and try to leave this world with inner peace.

In his honor Morrie Schwartz

Ten Commandments for the Management of ALS

Dr. Forbes H. Norris, Jr. Previously Director of the ALS Association Center ALS and Neuromuscular Research Foundation San Francisco, California

The optimal management of Amyotrophic Lateral Sclerosis (ALS) Motor Neuron Disease (MND) patient, requires adherence to several principles.

One: "Leave No Stone Unturned." The diagnosis must be made by experts and confirmed independently, since the diagnosis is entirely clinical and objective laboratory testing is lacking. The Amyotrophic Lateral Sclerosis (ALS) type of MND is usually fatal and each patient deserves expert confirmation;

Two: "Hope Springs Eternal." Even if no other diagnosis seems likely, hope of a less serious outcome must be preserved; ALS can "burn out" and the other types of MND are less malignant. Do not crush all hope;

Three: This is a Family Disease. The whole family should be involved as soon as the diagnosis is confirmed, because much of the burden will be on them as well as on the actual sufferer. We encourage the family to be present at all examinations, tests, research procedures, etc.;

Four: Early Intervention to Ameliorate Symptoms. Many MND symptoms can be reduced by the use of a variety of simple treatments, which should be utilized to ease the effects of progression. To do otherwise is a disservice and indignity. Avoid superimposing manageable problems on an already difficult situation. Should worse come to worst and a terminal stage be reached, the generous use of powerful narcotics has absolutely no risk of addiction and guarantees comfort in the last days. "Go out in good spirit with flags flying and whistle wet;"

Five: "You Are Not Abandoned and Alone." Participation as early as possible in experimental treatments confirms realistically that the sufferer is not alone and abandoned, that world-class researchers are devoting themselves to solving this disease;

Six: "Be It Ever So Humble, There Is No Place Like Home." In most circumstances home care is best! Brief admissions in hospital for more significant treatments may be appropriate later in the illness. However, again, we encourage family attendance, including at least one family member, to be present during the night;

Seven: An Informed Patient Is The Most Effective Patient. Keeping everyone as fully informed as possible about what may be next is to respect their intelligence and integrity. Their decision about what is best for them should always be respected. The difficult decisions about life support or assistance should be discussed openly early, without prejudice and be made by the patient before they are needed. Refusal by the patient to participate in research or life support, or a wish to self-administer unlikely treatments or alternative health methods, such as vitamins, acupuncture, medication, etc., should not be derided or decrease attention by the attendant health professionals;

Eight: Never Forget That The Patient Is In Charge Throughout The Illness; physicians, nurses, physical therapists and other health care attendants are serving only to aid the patient and to help the family manage as well as possible;

Nine: Equal Attention Must Be Given To The Family Finances And Maintenance Of The Home, especially when the MND victim has been the wage earner or the principal in the family;

Ten: Maintain Patient And Family Morale With Respite And Support During The Long Haul. This is perhaps the overriding, and final consideration in the management. Everything including medical and nursing care invariably goes from bad to worse when morale is low, and likewise good morale can compensate for many seemingly dire problems.

"Although the world is full of suffering,
it is full also of the overcoming of it."
Helen Keller

Support groups

People who have come together to share the common experiences and problems unique to their disease or condition. Support groups are organized to deal with four main sources of stress: mental or physical illness, addictive or obsessive behavior, personal crisis or life changes, and caring for disabled family members.

In addition to being a place to meet people who share a common bond, self-help/support groups also help members in other ways. Through newsletters and regular contact with other people in similar situations, members receive up-to-date information regarding their disability and treatments that are available. Along with this sharing comes understanding and a sense of belonging. Research confirms that the coming together of people in trouble serves to increase self esteem, decrease anxiety and depression, and raise levels of overall well being.

Information on support groups in your area can be found in a variety of ways. Handbooks of community resources, including support groups, are usually available in local libraries and hospitals. Major groups are often listed in the Yellow pages under "social service agencies".

The ALS Association
27001 Agoura Road
Suite 150
Calabasas Hills, CA 91301
(818) 880-9007

National ALS Foundation, Inc.
185 Madison Ave.
New York, NY 10016
(212) 679-4016

If you learn from your suffering,
and really come to understand the lesson you were taught,
you might be able to help someone else who's now in the phase you may have just completed. Maybe that's what it's all about after all
... ~Anonymous~

Tiny pink rose

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