Dr. Forbes Norris, our founder and a neurologist who pioneered the comprehensive management of ALS, left us a legacy of compassionate care, which he felt every ALS patient deserved.
His “Ten Commandments” for Optimal Patient Care remain our guiding principles:
Since a diagnosis of motor neuron disease (MND) is entirely clinical, and there is no objective laboratory testing, the diagnosis must be made by experts and confirmed independently. The ALS type of MND is usually fatal, so every patient deserves expert confirmation.
Even if no other diagnosis seems likely, we must maintain hope for a better outcome. ALS progression can stop or "burn out," and the other types of MND are generally less malignant. Do not crush all hope.
This is a family disease. The whole family should be involved as soon as a MND diagnosis is confirmed, because much of the burden will be on them, as well as on the patient. We encourage loved ones to be present at all examinations, tests and research procedures.
Alleviate symptoms with early intervention. We can reduce many MND symptoms with a variety of simple treatments. To do otherwise is a disservice and indignity. Should worse come to worst and your patient reaches a terminal stage, the generous use of powerful narcotics has absolutely no risk of addiction and guarantees comfort in the last days.
If your patients participate as early as possible in experimental treatments, it helps them realize they are not alone and abandoned. World-class researchers are devoted to conquering this disease.
In most circumstances, home care is best. Brief hospital admissions for more significant treatments may be appropriate later in the illness. However, again, we encourage family attendance, including at least one person present during the night.
An informed patient is the most effective patient. Keeping people as fully informed as possible about what may be next respects their intelligence and integrity. Discuss the difficult decisions about life support or assistance early, without prejudice, so that patients can decide before the time comes. And always respect their decision about what’s best for them. If patients refuse to participate in research or life support, or wish to self-administer unlikely treatments or alternative health methods, such as vitamins, acupuncture and meditation, their care team should not deride them.
Never forget that the patient is in charge throughout the illness; physicians, nurses, physical therapists and other healthcare attendants are only in service of the patient, helping the family manage as well as possible.
Equal attention must be given to the family finances and maintenance of the home, especially when the MND victim has been a wage earner in the family.
Maintain patient and family morale with respect and support during the long haul. This is perhaps the overriding, and final consideration in MND 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.