Janet Wendy: Another Progress Report

Janet Wendy's speech is getting more difficult to understand, especially when she is tired; her back is more bent and her neck muscles have wasted away so much that she has great difficulty holding her head up. Her increasing weakness is accompanied by increasing tiredness, so she sleeps more during the day; but as so often happens with illnesses such as this, she is insomniac at night, so she needs a small dose of a sleeping pill to help her get a good night's sleep. Our regular regimen remains much as it was when I described a typical day in the first post on this blog. There is a regular daily routine of eyedrops for her glaucoma, I use a resuscitation bag to inflate her lungs fully several times daily; daily dips in the swimming pool under my supervision, now mainly for exercise rather than swimming; high calorie meal preparation, and help with dressing and undressing. We get frequent visits from members of the team caring for her. This team includes Louise Coulombe, palliative care specialist physician; a visiting nurse, physiotherapist, occupational therapist (who is full of useful sensible suggestions) and now for the past 2-3 weeks, Sharon Morrison, a personal care worker who so far has been more of a domestic servant than a personal care worker, but this is changing subtly as each time Sharon comes she does more to help Wendy with dressing, grooming, etc. She has been coming in for 2 hours twice weekly, and soon we will bump this up to daily visits. The most important thing to report is that she is in good spirits, accepting her increasing disability philosophically and with equanimity. Inevitably there are times when she gets downhearted and frustrated by her inability to do simple housewifely tasks that were a matter of course all her life until a few months ago; but those times are rare, fortunately. She has a common feature of motor neuron disease (or ALS as it's known here) in that her emotions are very close to the surface; so she cries very easily, whether the stimulus is a visit from someone she cares about, a sentimental play or even a news report on TV or radio. These crying fits soon pass and she can then take part in normal back-and-forth conversations; but it can be disconcerting for old friends whom she hasn't seen for a long time. She has an increasing array of equipment and labour-saving devices to make life easier for her, many at the suggestion of the excellent occupational therapist, Courtney Henderson, who has been assigned to care for her. Yesterday Courtney measured her and assessed her manual dexterity for a power wheelchair that will make it easier for her to get about. Soon she will be able to fulfill her ambition to get out and terrorize the neighbourhood, speeding dangerously along the sidewalk, scattering small children, dogs and old people walking with canes in her wake.