ALS (Amyotrophic Lateral Sclerosis) also known as “Lou Gehrig’s Disease” is a neuromuscular disease that results in paralysis of the muscles. These are the muscles in the arms, legs, and those for speaking, swallowing, and breathing.
This disease changes the lives of the entire family. The loved ones of patients become caregivers without having ever been trained. They learn by trial and error. They now have a job 24 hours a day, 7 days a week that consists of: doing or supervising the dressing, feeding, bathing, medicating, and even the breathing of these people with whom they once shared everyday chores. They have to be interpreters because other people can’t understand the patient’s speech and at some point find other ways to communicate because they can’t either.
There are organizations that will provide assistance but the caregivers of patients with ALS are so busy just trying to get by day by day that they need help and support in finding those organizations.
The ALS Family Support Group of Ohio, Inc. tries to lighten the load of the patients and their loved ones living with this horrible disease.
Phyllis Van Horn
You Are Not Alone
The diagnosis of ALS is obviously most distressing and often unbelievable to the otherwise healthy person who is not suffering any pain. Unfortunately, this news is exacerbated by the additional report that there is no cure and little hope.
These dreadful thunderbolts are accompanied all too often by the added distress of dealing with a physician who feels that handling the future problems of this difficult disease is futile and thus outside the focus of his interest. Too often, the distraught patient and family are hurried out of the physician’s office door with the admonition that there isn’t anything further to be done and therefore no need for the patient to call him. Many ALS patients say they literally didn’t know what to do next.
This is the time for the newly diagnosed patient and family to become aware that there is an ALS support group available. This group can provide the information necessary to comprehend the vagaries of this disease, present options on dealing with the difficulties of living with it, and help families feel as if they are actively participating in their own care.
A support group can show the new ALS patient and his family that they are not the first to have to deal with ALS, that there are others, like themselves, who are living with this disease. Knowing that you are not alone can be encouraging.
The structure of a support group can take many forms. Some have found that selecting certain patients for closed regular meetings over a set period of time, conducted under the guidance of professional social workers, is the optimal way to benefit the patients and their families. Our experience has shown, however, that patients and families are less interested in dealing directly with their feelings and those of other distraught members than they are in obtaining as much information as possible about the disease itself, both from experts and from other patients and families who have been coping successfully over relatively
long periods of time.
We have found that all ALS patients and families will not attend the support group, either because they wish not to discuss their disease in front of others, or perfer to deny the reality of the diagnosis, or wish to deal with this problem in their own way. It is amazing how the regular attendees will welcome and embrace newcomers, enveloping them in the camaraderie of the group, and encouraging them to come to future sessions.
The value of a support group for ALS patient and families cannot be overstated. It uniquely fulfills needs in this society that large extended families used to fill: solace, comfort, and understanding in times of intense and ongoing stress. Until we can offer these patients the hope of a cure, we must rely upon the psychology and humanity of support groups to help ease the burden placed upon them by this devastating disease.
Delores Holden, RN
ALS Research Center
Pacific Presbyterian Medical Center
San Francisco, CA