"Brace yourself"

As I wait for the final results from my muscle biopsy I've decided to move forward in terms of improving my overall function. At work I shortened my day to 4 hours of patient contact 3 days a week. This will likely be 4.5-5 hours in reality but even that schedule will help me conserve energy and avoid muscle fatigue which can be so painful. I'll still do nursing home rounds and weekend call.
I also chose to be fitted for dynamic AFOs (lower leg braces) to improve my gait. These were recommended by a knowledgeable PT but I secretly hoped that the orthotist she referred me to would tell me assistive devices were unnecessary, he didn't. He pointed out the deficits the AFOs could correct and assured me they would not be noticeable under pants. I already wear a clavicular splint when I'm working so I hate to distract patients from their issues by having another visible support device for them to ask about. The patient-physician relationship involves a delicate balance of shared information. It's appropriate for patients to see their doc as a person but not to the point where it interferes with caring for the patient.
Last week I asked a partner who does sports medicine to look at my shoulders because they are causing more pain. He pointed out that most of my rotator cuff muscles are weak and atrophic. So are the lower traps, lats and left pec. I can't stabilize my scapulas so arm use away from my body is inefficient. I discovered that when Ralph made a full pot of coffee and I was unable to lift it out of the coffee maker. I've been trying to increase shoulder strength for the last 9 months so I see this as more evidence that my condition is progressing. I hope to be salvageable when I'm finally diagnosed.
Many patients fear that they won't be "fixable" if a problem is detected and that fear keeps them from seeking medical care in the first place. Most find that their fears are unfounded but for others this is not the case. While we continue to stress the benefits of preventive medicine, expand our diagnostic skills and explore new treatments, physicians also need to develop better methods for extending hope to those we can not fix. It is human nature to not want to face our areas of weakness but we cannot let that keep us from comforting patients in need. Rather than ignoring their phone calls or pushing them off on another doc we need to validate their concerns and offer reassurance that they will not be medically abandoned. Relief of pain, help in maintaining independence and setting realistic treatment goals are physician tasks that need to be done gracefully. Here the "art of medicine" is truly apparent. Medical school training and most residencies fail to teach this but physicians can't hide behind this excuse; they need to find ways to cultivate these skills through workshops or readings or via mentoring with a caregiver who does this well. It can be uncomfortable for docs to function in this role but once a physician gains skill in this area it's importance to the patient's quality of life becomes obvious. As a profession we need to brace ourselves and tackle this area of health care when the need arises.