Well I guess I should comment on the episode 🙂
Overall I think it was pretty good. I wasn't too pleased with the ending, or how obsessed Abby was with keeping him in the hospital to "recover." The focus on a cure was too much, IMO. See, even if there were a breakthrough cure, stem cell or not, it wouldn't do somebody in his position that much good. Nothing is going to really undo the damage that is done. The best to hope for would be to stop further damage. And at that stage, most of the damage is there.
Many of our patients choose not to go on a vent. Others choose to, but then decide to remove the vent -- it gives them some control over when they want to die, rather than just dying when they can't breathe anymore. We also have patients who refuse g-tubes and die that way. People on the vent usually die of pneumonia or other causes, or sometimes for no discernable reason.
So, more of a specific critique: James Woods did a great job. His voice, when he was still talking, wasn't really what ALS patients sound like (there is a typical "sound" to ALs speach), but I'm sure that's extremely hard to imitate. Obviously the medicine had to be adapted to a tv program, and one about an ER at that, so some things were not realistic. If he had a multidisciplinary team, like he said (which is what our clinic does -- PT, OT, speech, nutrition, psych, etc.), he would have been recommended various interventions as he progressed. A walker would have come far before a wheelchair, and a cane before that probably. Typically, somebody comes to clinic and describes how they are doing, the PT evaluates him, and then further assistance is recommended as needed. The same holds true for nutritional intervention. Oh, and people choke on thin liquids before they choke on food. Weight loss and choking generally lead to the recommendation to place a g-tube before it becomes necessary to rely on it. (Of course a "non-compliant" patient, or one simply in denial, could easily get to crisis stage before actually allowing these interventions. But they would have been recommended long before.)
The assistive communication technology is amazing, but it can't be used that quickly. Typically it takes a long time for somebody to get out a full sentence, even when they are still using their hands to manipulate the computer (via touch-screen or switch). I've had a number of conversations with patients this way. I was actually surprised at the synthesized voice, because in reality the voices are usually much more life-like (though it's up to the person to choose a voice). As far as timing, however, I forgave them because it was a TV show after all 😛
But yeah, people do often pre-store long sentences, or even whole conversations. I know one person who stored all the answers he could think to potential questions about a presentation he was making at work (he was still working, which many people try to do as long as possible). In a general conversational setting this usually isn't too useful because of the need for spontaneity. The newer computers "learn" the patient, however, so you can type in the beginning of a word and it suggests the complete word, and you can accept or reject it.
Hmm....so overall I thought they did a very good job. But I thought the end was a little too hopeful, almost cruel. Most people I've met do choose to go on hospice at some point. Oh, and I thought they did a great job of showing the strain the disease has on a caregiver, and the dedication some people have. (Unfortunately that isn't always the case, of course.)
I've only been working in the clinic for 7 months now. I would really like to find out what the doctors, PT, nurses, etc. thought about the show. I'll ask them on Monday (Fridays I do mouse work half day and come home!).
[I don't know of any stem cell studies happening in the U.S. I'm not sure we'd know what to do with stem cells in ALS, like how they would be used. We do have one patient who will be traveling soon either to South or Central America to get a stem cell infusion, against U.S. medical advice.]
