Visit to Duncan Murphy in Rehab in Louisville

Friends:

I flew to Louisville, KY, on Saturday, May 25 from Philadelphia and returned there on Wednesday, May 29. (I planned to go to a Perl (http://www.perl.com) class offered by Mark-Jason Dominus in Philly on Wednesday night (http://perl.plover.com/appearance.html); hence, my flying from Philly rather than NYC.) Susan picked me up at the airport and very generously allowed me use of her car during most of my visit. Carmen, Duncan's mother, suggested I stay at a branch of the Suburban Lodges of America near Duncan's rehab center. That worked out very well, as I had a little kitchenette along with the room -- and for only $39/night!

After dropping my bags off at the motel Susan and I went over to Christopher East, the rehab center in suburban Louisville where Duncan has been for a couple of weeks now. This is the rehab center to which Duncan first transferred following discharge from the U of KY hospital in Lexington, but from which he had to be rehospitalized at the U of Louisville hospital when it was discovered he had developed massive wounds from bedsores while at U of KY. (Actually, Duncan was admitted for MRSA pneumonia; he had been to U of L Medical center earlier that day so that his abdominal incision could be examined. The surgeons recommended an antibiotic and Duncan was sent back to CE at about 6pm. By 10pm that same night, he had developed a 105degree fever and was sent back to U of L where he was to stay until May 15th-HQM)

Based on a conversation with Susan while she was in NYC in early May, I knew that Duncan was making neurological progress even while he still had massive non-neurological problems (e.g., a heart attack, risk of death from blood clots, pneumonia, bacterial infections). But until I arrived in KY I really was very unclear as to what extent Duncan was ever conscious and to what extent he still remained comatose. Duncan's current situation is very much one where the glass is both half-full and half-empty. Let's take each case in turn.

Immediately after the March 8 accident, Duncan was diagnosed with diffuse axonal injury and, from the information and links which Henry posted on the weblog, I feared that the most likely prognosis would be that he would remain in a "persistent, vegetative state." The immediate rescue response, in which he was transported by helicopter to U KY hospital in Lexington from the crash site some 20 miles away, meant that he got care quick enough that he avoided dying -- barely. But the long-term prognosis was dismal.

I am happy to report that comatose is about the last thing Duncan currently is and that we can rule out the possibility of a vegetative state because -- well, because I've never had to arm-wrestle a turnip (http://www.fln.vcu.edu/grimm/turnip.html). Duncan is awake most of the daytime and, if he were not being sedated, would probably be awake most of the night as well. Just after waking he's not particularly alert (when was he ever?), but he achieves a fair degree of alertness after about an hour. He clearly has some capacity in four of the five senses (I couldn't assess his sense of smell) and varying degrees of motor function in all of his major limbs. As of a week ago, his vocal utterances have amounted to a total of three words. He said "Shit" in protest against some medical procedure and one morning he managed to say "Good morning" to his sister. So he has some language and speech capacity.

On the other hand -- and here comes the half-empty perspective -- Duncan is now faced with the task of recouping 43 years (as of June 5) of neurophysiological and neurocognitive development. In terms of his motor capacities he's functioning about as well as an infant somewhere between 6 and 12 months old. He has what a psychiatrist would call "blunt affect": only the beginnings of facial expression. As of my visit, he had yet to smile.

Perhaps more importantly, it's very difficult to assess how much he understands about what has happened to him, where he is or even who he is. If he's looking in one direction and you call to him from another direction, he doesn't immediately turn his head. When he does turn his head, it's not clear whether that's because he finally processed your call or because he got tired of looking in the original direction. Similarly, during the four days that I visited Duncan, I never had definitive evidence that he recognized that Jim Keenan was the visitor. There were times when he pulled me close to him and stroking my beard along his chin. But did he do that because he recognized his friend of 20 years standing or because I simply showed up four days in a row? Until he regains greater language capacity, we have no way of assessing what meaning he attaches to what he is experiencing.

He still has significant non-neurological problems. He has two large, gross wounds, one in his abdomen and one in his lower back, which resulted from the bedsores/infections he contracted in the hospital. (They're not from the accident.) He no longer has a trachea tube and that incision is healing well. But he has a "peg" for a feeding tube so that this slurry they feed him goes directly into his stomach. Duncan is incontinent, which translates into adult diapers and a catheter in his penis.

One of the main challenges that Duncan and his caregivers face is how to encourage him to regain use of his fingers and hands while preventing him from pulling at the peg, the wounds and the catheter. He has considerable strength and mobility in his right hand. It appears that the most primordial human motor motion is the urge to scratch and itch. Once Duncan starts scratching himself you have to be on constant alert to keep him from pulling at the feeding peg, the catheter and the other wounds. At night or when unattended he has to have his right arm tied down to the bed and wear a large mitten which is also tied to the bed. Otherwise he'd find the peg and pull it out. This has already led to one trip to the emergency room. When I was there and when the restraints were untied from the bed frame I was constantly wrestling his right hand away from the peg. Very exhausting work.

Duncan has begun to get physical therapy five days a week. Occupational and speech therapy will follow (if they haven't already begun). As a nursing and rehab facility, Christopher East is good, but not great. It's decor is very Country Living (http://magazines.ivillage.com/countryliving) and it's a lot better than the nursing/rehab facilities my clients at Kingsboro Psychiatric Center (http://www.omh.state.ny.us/omhweb/facilities/kbpc/facility.htm) can get into. But there's only so much staffing that a facility can squeeze out of Medicaid funding. Duncan's family have been exploring other options but is a ways off from making any decision.

Duncan's family, the family of the fellow sharing Duncan's room and the staff of Christopher East all commented favorably on the tape cassettes I recorded of my own musings and sent to Duncan. They all said that they had a calming affect on Duncan during his many periods of agitation. I strongly encourage all of you to get a Walkman, some cheap 60-minute tapes and just start speaking into the mike about the activities of your daily life. A single cassette in its tray inside a padded jiffy envelope will take only $.80 postage (at least until the rate increase at the end of June). You can dictate a tape over the course of a couple of days with ease. Note: Duncan's family now uses a post office box: PO Box 4504, Midway, KY 40347-4504.

I also would urge you to consider a trip to Louisville to spend a couple of days with Duncan. Apart from the direct therapeutic effect it will have on Duncan, it will be of indirect benefit as well because it will help emotionally replenish Duncan's mother, sister and brother who have invested many, many hours to be by his bedside. Contact Susan (mailto:susanemurphy@mac.com) to explore that option further.

Jim Keenan jkeen@concentric.net

An Afterthought

In the clear light of day I re-read the message I sent you all late last night. I would like to refine 2 points, both in a more positive direction:

1. Though Duncan has a tremendous way to go, it should be emphasized that he does make small, measurable progress every day. For example, with regard to using his right hand/arm to reach his legs: On the first day I visited him, he could only scratch his butt. By the fourth/last day I was there, he was able to grasp his T-shirt, elevate his right knee and pull the T-shirt over the kneecap.

2. None of his professional care providers has placed any upper bound on his recovery/progress in any particular area of neurophysiological or neurocognitive development. Of course, it may subsequently become evident that a particular functionality may be permanently impaired or reach a limit point. But he hasn't reached any such limit point yet.

Perhaps the glass is now 51% full.

Jim Keenan

© Copyright 2004 Henry Q Murphy. Last update: 2/18/04; 1:49:49 AM.