When your Friend has ALS
What do you say when your friend tells you that her brother, whom you know, and a man in his mid-fifties who is in the prime of his life, has just been diagnosed with Amyotrophic Lateral Sclerosis, (ALS), the disease that the general public knows as Lou Gehrig's disease? It's tough to come up with words of comfort for a friend or relative who has this cruel disease.
Everyone whom I have known with the disease has been a male in his fifties, sixties, or seventies, and none has had any family history of the disease to the best of their knowledge. According to one of the many websites about ALS, ninety to ninety-five percent of people have sporadic ALS, while the other ten to five percent have familiar ALS, that is, with a genetic component.
ALS is a progressive, degenerative disorder that affects nerve cells to the brain and to the spinal cord. Ultimately the brain can no longer control muscle movement. The disease is difficult to diagnose; there is no one test, just a battery of tests that eliminate other possible diseases. Symptoms vary from patient to patient. For some, the first symptom noticed is difficulty with grasp. For others, there are problems with the voice, vocal cords, and swallowing. Obtaining a second opinion is generally a smart thing to do when someone has these symptoms. Life expectancy is about three to five years for patients having ALS.
A few times as an occupational therapy practitioner, I have had patients on my caseload who were diagnosed with ALS. One was my former family doctor, and that made me especially sad to see him no longer be "at the top of this game." That's really an understatement of how poor his overall functioning was.
Since there is really no cure for the disease, physicians must treat the symptoms of ALS. Similarly, occupational therapists work to minimize the problems typical to the disease. Training in activities of daily living (ADL) is a big part of OT for the ALS patient: dressing, bathing, hygiene and ultimately feeding as oral skills and hand function diminish. And of course, OT's working with patients who have Lou Gehrig's disease make upper extremity range of motion, strength, and coordination part of the treatment plan as well as therapeutic activities to improve balance.
So how does one provide support to a friend who has ALS in the family? Is there a way to put a positive spin of how this disease will play itself out in the few short years that remain for the patients, without being deceptive about the gravity of it?
I would be interested in hearing from other occupational therapy practitioners about their own professional or personal experience dealing with Amyotrophic Lateral Sclerosis.