I’m new, posting on behalf of my father as well as myself. He is 85 years old, with the usual plethora of problems that many people of his age have. He thinks he may have ALS. In fact he has been in hospice care for a partial intestinal obstruction related to surgery for colon cancer decades ago, and perhaps also to radiation for cancer when he was a young man. But now the hospice diagnosis is pulmonary fibrosis, which we learned he has a few weeks ago. (When he was hospitalized for intestinal obstruction a year ago, they apparently were too focused on the state of his intestines to tell us about his lungs.) He came down with a cold and lingering cough about two months ago, after which he developed fatigue, a hoarse squeaky voice, greatly increased shortness of breath, increased difficulty swallowing, and an increase in a tendency to cough and sputter during and after eating. The cardiologist put him on a diuretic because he was building up some fluid in his lungs, but it didn’t help the breathlessness for very long. His swallowing and breathing problems began a few years ago, but are much more pronounced now. When he was hospitalized last year for the intestinal obstruction and had a nasogastric tube placed, he lost his voice as well as the ability to swallow without serious choking and aspirating food. The speech therapist who evaluated him at the time raised the possibility that there might be something neurological going on, but the problems got much better over the next few weeks. Another speech therapist also mentioned that he seemed to have reduced mobility in the muscles used for speech, even after his voice returned, though his speech seemed normal to me.
Now, after this latest cold, he has continued to lose his voice and can barely talk above a whisper, or sometimes not at all. It’s the voice and breath that aren’t there, not his ability to articulate the words. He also rapidly lost strength in his arms and legs, not the use of them but no strength. He says he has noticed muscle twitches in his hands and other parts of the body in the last year, greatly decreased manual dexterity, muscle tremors on exertion, and muscle cramping in his legs and hands. He's also very "jumpy," with what looks to me like the same kind of startle reflex that a friend of mine with cerebral palsy has. One of his father’s brothers died of late-onset ALS, but his own father didn’t have the disease. It seems to me that pulmonary fibrosis can account for the weakness and shortness of breath, but I don’t know about the voice and throat problems. He decided against an EMG and NCS, figuring that it wouldn’t matter if he did or didn’t have ALS in light of his overal poor health, but not pursuing it left question marks in his mind as to what was going on with him.
I guess I have two questions for the forum. The first one is, do my father's symptoms sound like ALS? And next, does it make a difference in how my father's symptoms need to be managed, whether they are the result of pulmonary fibrosis or a neurological disease like ALS? It sounds like the end of life is very similar for both diseases, with the loss of lung function being the thing that takes people away.
Helen from Alexandria VA
Now, after this latest cold, he has continued to lose his voice and can barely talk above a whisper, or sometimes not at all. It’s the voice and breath that aren’t there, not his ability to articulate the words. He also rapidly lost strength in his arms and legs, not the use of them but no strength. He says he has noticed muscle twitches in his hands and other parts of the body in the last year, greatly decreased manual dexterity, muscle tremors on exertion, and muscle cramping in his legs and hands. He's also very "jumpy," with what looks to me like the same kind of startle reflex that a friend of mine with cerebral palsy has. One of his father’s brothers died of late-onset ALS, but his own father didn’t have the disease. It seems to me that pulmonary fibrosis can account for the weakness and shortness of breath, but I don’t know about the voice and throat problems. He decided against an EMG and NCS, figuring that it wouldn’t matter if he did or didn’t have ALS in light of his overal poor health, but not pursuing it left question marks in his mind as to what was going on with him.
I guess I have two questions for the forum. The first one is, do my father's symptoms sound like ALS? And next, does it make a difference in how my father's symptoms need to be managed, whether they are the result of pulmonary fibrosis or a neurological disease like ALS? It sounds like the end of life is very similar for both diseases, with the loss of lung function being the thing that takes people away.
Helen from Alexandria VA
