I got a phone call yesterday from a P.T. He had a question about a certain kind of headrest that a patient of his had. I asked if this patient had ALS (Lou Gehrig's Disease) since I had done a trial on such a patient a few months ago. It was the same person.
Even though I usually only see patients on just a single occasion, this particular person had made an impact on me. He was roughly my age, and although he was completely paralyzed there was no question as to his owning his autonomy. His condition had progressed to the point that his speech was strained, yet he made it perfectly clear that he was not satisfied with the huge, mummy-like neck brace the orthopedic engineer had outfitted him with earlier. He explained that he himself was an enigneer, and I could sense his indignation with having been prescribed something he disapproved of.
For someone who hadn't known any better, I could understand how easy it could be to mistake a patient like this for someone with, say, a serious brain injury. And it must pain him immeasurably to defenslessly witness others talking about him with his assistants, in his presence, instead of addressing him directly. For this reason, I make a point of speaking directly to the patients I meet, even if they are unable to communicate themselves.
I remember that I put together and presented three alternative headrests with forehead straps; like something out of "The Three Bears", one was soft, one was hard, and one was in between. Most people choose the soft model even though it doesn't offer as much support as the other two. Without hesitiation, the "engineer" chose the hard one, realizing that this was the optimal way of "building" support for his head. He seemed so pleased when we were done, and I felt so good to have made a contribution. I could only hope that the effect would last,even though he probably would not live for more than a year...
But now his therapist was calling me, wondering that since he had to adjust the headrest's position if it's OK that the headrest is somewhat rotated, since the "engineer" preferred it that way. I told him that there's nothing unusual about having a somewhat asymmetrical position and that he should just trust whatever his patient said.
Cautiously I inquired as to how the headrest was working. Getting headrests with forehead straps to work long term is probably the toughest challenge I face in my profession, and working with a progressive condition like ALS means that the body is constantly changing. So when the therapist answered that the headrest was great, that it had been a real "lift" for his patient, and he was so satisfied, I couldn't have been more thrilled.
More than anything I felt so incredibly grateful to have been given the opportunity to make a difference.
Even though I usually only see patients on just a single occasion, this particular person had made an impact on me. He was roughly my age, and although he was completely paralyzed there was no question as to his owning his autonomy. His condition had progressed to the point that his speech was strained, yet he made it perfectly clear that he was not satisfied with the huge, mummy-like neck brace the orthopedic engineer had outfitted him with earlier. He explained that he himself was an enigneer, and I could sense his indignation with having been prescribed something he disapproved of.
For someone who hadn't known any better, I could understand how easy it could be to mistake a patient like this for someone with, say, a serious brain injury. And it must pain him immeasurably to defenslessly witness others talking about him with his assistants, in his presence, instead of addressing him directly. For this reason, I make a point of speaking directly to the patients I meet, even if they are unable to communicate themselves.
I remember that I put together and presented three alternative headrests with forehead straps; like something out of "The Three Bears", one was soft, one was hard, and one was in between. Most people choose the soft model even though it doesn't offer as much support as the other two. Without hesitiation, the "engineer" chose the hard one, realizing that this was the optimal way of "building" support for his head. He seemed so pleased when we were done, and I felt so good to have made a contribution. I could only hope that the effect would last,even though he probably would not live for more than a year...
But now his therapist was calling me, wondering that since he had to adjust the headrest's position if it's OK that the headrest is somewhat rotated, since the "engineer" preferred it that way. I told him that there's nothing unusual about having a somewhat asymmetrical position and that he should just trust whatever his patient said.
Cautiously I inquired as to how the headrest was working. Getting headrests with forehead straps to work long term is probably the toughest challenge I face in my profession, and working with a progressive condition like ALS means that the body is constantly changing. So when the therapist answered that the headrest was great, that it had been a real "lift" for his patient, and he was so satisfied, I couldn't have been more thrilled.
More than anything I felt so incredibly grateful to have been given the opportunity to make a difference.
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