reactions and replies

A rather grey drizzly Monday was enlivened by several letters from New Zealand, almost all with newspaper cuttings of the damage done by the magnitude 7.1 earthquake near Christchurch. One graphic description of the noise sounds almost identical to but much louder than the noise I heard when we had a 6.0 tremor here a few weeks ago. But ours was not only a rare event in these parts it was far less devastating. The Christchurch earthquake and its aftershocks collectively did damage amounting to several billion dollars, but unlike the earthquake of identical magnitude some months earlier in Haiti, it caused no deaths whatever. We can thank New Zealand's rigorous building standards for this. We'd heard all about the Christchurch earthquake before today of course, in TV reports and numerous emails, some with photos. But actual letters in envelopes bearing stamps, evoke the reality in some indefinable way, bring it home to us more vividly than the email messages. Is it just me, and my age, conferring on handwritten and typed letters with or without enclosed newspaper cuttings a greater authenticity than electronic signals?

One of these NZ letters had a photo of two recent additions to the human race, a toddler and a newborn baby; the toddler's name, I was delighted to see, is Caleb. That's a very uncommon name nowadays; it's the name of my father's uncle, who was a signalman on the Great Western Railway, operating signals and switches near Warwick; and I have on my wall a meticulously accurate pencil sketch of Kenilworth Castle, or rather of its ruins, dated 1886, by Caleb Last, who, I suppose, had no art lessons; nor did my father or my son David; but all three use exactly the same technique to draw meticulously accurate pictures. I suppose this is a genetic characteristic. I wish I shared it!

Today's emails were interesting too. One from my friend Jeff House in San Francisco echoed a plea from another friend in Chicago last week: why don't I write an Op-Ed, a panegyric singing the praises of the Canadian health care system. Why indeed! Well, entrenched opinions aren't swayed by the kinds of facts, figures and anecdotes I could muster. Minds are made up, and aren't going to be swayed by facts or by eloquence greater than mine. Thanks for the thoughts, but I'll count our blessings and sit this one out.

All power to the chair!

After a timid start there's been no holding Wendy back these past few days as she gets more accustomed to driving her power wheel chair. All the family felt frustrated when we had such perfect weather last weekend but we simply couldn't persuade her to go outside. Early in the week, however, Rebecca and Richard backed me in tempting her to venture out the back door in the corridor between our tower block and the garage, then the next day Courtney Henderson, who fitted her for the chair and made last-minute fine-tuning adjustments, persuaded her to go out the ramp from the garage to the street. Once she has got used to driving out of doors there will be no holding her. But she loves the chair most of all because she can tilt it to the position that she finds the most comfortable -- as you can see in the photos in the post before this one. Now she is spending most of her waking hours in it.

Her chair is brand new, custom-built to her exact measurements, and is the latest and best example of the excellent service we have been getting from our health and medical care system. Diffidently, I raised with a couple of members of the team caring for her the question of priorities in allocating scarce and expensive equipment that I've discussed in earlier posts on this blog, and was emphatically told that setting priorities plays no part whatever in the process. We waited as long as we did simply because there's a great deal of work involved, and not enough skilled chair-builders in the business.

Another thing that happened this week is that I had a birthday, celebrated in a pretty low key manner this year but that's as it should be; there is nothing special about the transition from 83 to 84 years. Richard provided delicious salmon and all the trimmings to go with it, which made a pleasant change from my usual steak and two vegetables; and Rebecca produced a splendid little cake, the last remains of which still repose in the frig for me to savour over the weekend.

Comfortably ensconced

Here are a couple of photos taken today of Wendy in her new wheelchair. She is still learning how to use it, but is making excellent progress. One of its advantages is that she can control the amount of tilt to give herself the most comfortable position to recline. Once she becomes proficient driving it, the controls can be adjusted so she can move about while in this reclining position, but for now as a learner driver for safety reasons, she has to be upright, or very nearly upright before the chair can move.

In the background of these photos you can see her speech synthesizer's touch screen, set here on symbols. Her keyboards, either alphabetical order or QWERTY keyboard, are on the nest screens - very large letters, too large for touch typing, which is a good thing because her weakened fingers are too 'clumsy' as she puts it, to be able to touch type now.

Finally the power chair has arrived

Now we have every item of high-tech equipment and specialized device that can be deployed to make Wendy's life a little easier. This week we went to the workshop where major items of equipment and devices are assembled. Her power chair had some final fine-tuning adjustments and she had a test-drive in a spacious room where several other large pieces of equipment and devices scattered about the room presented tricky obstacles that she had to steer around. Two days later it was delivered, and she has since had a few test=drives in our apartment -- leaving visible traces of her passing in the form of several abrasions and scars on furniture, walls and doors... The power wheelchair is a snug fit and she sits higher in the room, towering over me in the next chair. there is an elegant perspex tray that slides over the arm rests and her speech synthesizer can sit on this. Above all, it is very comfortable, and can be tilted back so she reclines in a semi-recumbent position Which is all very fine, but she feels trapped when she is in the chair, especially when the tray is in place. She can't get out unaided, whereas she can get in and out of the arm chair unaided, or rather just with the arms of her walker for leverage. Of course as her legs get weaker she will find the power wheel chair essential but for now she is in an in-between state with legs that are weaker but still work reasonably well. I think she and I may both be wondering whether she really needs the power wheel chair; at present she doesn't but she soon will, so it is as well to get used to it and to learn how to handle it before it becomes her only way to get about. Today we are having one of those perfect late summer or early autumn days, a day of bright sunshine with a cloudless blue sky, the first traces of autumn colours, no wind, temperature in the low 20s. So today I will encourage her to get outside into the fresh air.

We continue to get letters, cards and emails from family members and friends who are scattered far and near in all corners of the world. This morning when I turned on the computer the first email to pop up on the screen was from Dodie Ziemer in Melbourne, a dear friend I have known since she and her husband Harald arrived in Adelaide as migrants from Germany on Christmas Day 1955. Wendy met them a few months later when she and I were courting. Dodie and Harald are in good shape, staying in touch by Skype phone with their son Markus, daughter-in-law and twin grand-daughters who are living in Santiago, Chile, for three years. One of the changes in the world in my lifetime has been this new freedom to move easily all over the world and for family members and friends to stay closely connected despite sometimes vast distances of physical separation. Alas, Skype no longer works well for Wendy; she and those with whom we speak by Skype can see each other, mostly David and Desre who Skype-phoned from Toronto last evening, but Wendy's voice fails under those circumstances. At least we can see each other and she can smile her lovely smile, can make gestures; but speech is nearly impossible and the synthesizer is too slow as yet. She needs more practice, but says she doesn't feel motivated or inspired to get this practice. I'll continue to encourage her and with time and practice her skill will increase.

Life-changing events

In the 1950s the group medical practice in which I became a junior partner had a monthly financial meeting. Our accountant presented the latest balance sheet, the earnings and expenses of each partner. At the meeting in about October 1958 my partners rejoiced as the accountant recited the numbers. I could not share their glee. I saw in my mind's eye the sad face of a woman whose only son I had helplessly watched as he died of overwhelming viral toxaemia during the Asian influenza pandemic that had brought us so much work in the previous months, made so much money for all of us. On the morning before our meeting, this grieving mother had insisted on paying me for my fruitless visits to her son. He had been my friend, an occasional playing partner at golf, which made our encounter emotionally stressful. That had been a moment of truth. I realized in an instant that I did not want to get rich on the proceeds of other people's misfortune, sickness or suffering. I loved my work as a family doctor, but could not share the delight my partners expressed that evening. In that moment of truth I realized that I would have to find another way to follow my profession...and, as it transpired in due course, to lead a small part of it briefly. So that monthly business meeting in the early summer of 1958 was a life-changing event. A second life-changing event followed 2 or 3 months later. As the influenza epidemic waned, I fell ill myself with a life-threatening virus pneumonia; and during my slow convalescence I had time to think about ways to make the best use of the life I had been spared to live. That was when I decided to leave the family practice I loved, and make a career in helping as best I could to find ways to keep people as healthy as possible for as long as possible.

Priorities

In the 1960s when we lived in Edinburgh, my Canadian-American friend Kerr White sent Marie McCormick, a very bright medical student from Johns Hopkins University medical school, to spend a summer term elective period with me. Marie later became a distinguished pediatrician. The main task he gave her for her summer elective was to find out what criteria were used in Scotland to set priorities for the use of scarce and costly renal dialysis services. It was an epidemiological approach to an ethical problem, priority-setting in the allocation of very scarce and very costly services The question of setting priorities for renal dialysis and Marie's youthful enthusiasm led me to become associated for a while with a select committee of the Scottish National Health Services that had the heavy responsibility of deciding which patients in renal failure would get access to renal dialysis and the chance to live a little longer, and who on the contrary would not get access to dialysis and therefore would be allowed to die untreated. Put like this, it sounds cold-hearted, inhumane, the opposite of what good medical practice is supposed to be. On the contrary, it is the very highest quality medical care, to use reason rather than happenstance, wealth, emotion to decide how best to allocate extremely costly equipment and a skilled team of very highly specialized physicians and the technical experts responsible for running and maintaining the equipment, performing tests and titrating biochemical variables. I can't remember all the details but I do remember that in the early and middle 1960s the existing renal dialysis services in Scotland could meet the needs of only about one in every nine or ten of the theoretically eligible patients. As best we could determine at the time the situation was much the same in other wealthy nations, except the USA, where the deciding factor was (and still is) wealth: those who could afford to pay got dialysis, even if they suffered from a terminal condition like diabetic renal failure. In Scotland then, and in other enlightened nations then and since, decisions about allocation of scarce resources and the expertise of highly specialized professional staff were based as far as feasible on reproducible scientific evidence. It is a variation on the theme of triage, the system used to decide whom to treat first (and whom to allow to die quietly) in a major disaster with mass casualties.

I remember and think about Marie McCormick's work on renal dialysis in Scotland in the 1960s when I see the range of sophisticated equipment and devices, and reflect on our good fortune to have such a plentiful supply of skilled expert professionals caring for Wendy. Is there much priority-setting, or is access to the top quality care we have had, determined by my 'rank' or my knowledge of the system? I don't think it's either really; I think we are just fortunate to live in a city that is fairly well supplied with excellent professional people in all the branches of the Canadian health care system, and a reasonable supply of all the specialized devices and equipment that we have needed. Once again, I'm thankful for the Canadian health care system and all the services and skilled staff it employs.

More toys

Toys isn't the right word, I know: these are pieces of equipment. One very useful gadget that I don't think I've mentioned before is the suction machine that Wendy uses when she is troubled by the overwhelming flow of mucus and saliva that from time to time stream from her nose and mouth almost in a torrent. This distressing symptom is common in advanced stages of motor neurone disease (ALS). Some sort of suction is far superior to a handkerchief which is soaked in a few moments, or a box of tissues that might all get used in an hour or two. She has had this for a week or two now. Yesterday (Sunday) Louise Coulombe finally cleared her backlog of urgent house calls and came to see Wendy. We have argued, Wendy and I have argued, that is, about the efficacy of the BIPAP ventilator. I tell Wendy that when she sleeps while she is using the face mask, she seems constantly to be distressed, judging by the noises she makes and her facial expression; moreover, it doesn't fit well, most of the air escapes around the sides of the face mask so each intake is accompanied by loud fart-like noises, which she can't hear because she is so deaf. On the other hand she sleeps quietly and peacefully without the ventilator. So yesterday, Louise said she needs a proper hospital bed in which she can be propped up; and this should eliminate the feeling of suffocation she gets when she lies flat. Sitting up, she is not breathless, and her oxygen saturation level is 97-98%; and she can get about our apartment quite briskly with the aid of her walker, so her respiratory reserve is still quite considerable. Louise asked for the hospital bed to be delivered tomorrow afternoon. Tomorrow morning we have an appointment with the speech language pathologist, to collect the speech synthesizer, so by tomorrow evening two costly and complicated item of equipment will be added to those we already have. This week we might also get the power wheel chair that we have waited for now for several months. The advantage of this over the walker she uses now is that she will be able to see where she is going, rather than only the floor beneath her feet, because it is to be fitted with a reclining back. It's as well that we have a spacious apartment!

Another Labour Day weekend

This blog post carries on a 'tradition' that lasted over 40 years. For many years I wrote a family letter during the Labour Day weekend, that was a sort of 'status report', because this weekend marked the end of the allegedly relaxed summer and the beginning of another academic year with new groups of students, new courses, and cooler weather. This year we have the last of these with emphasis - it's been another hot week with temperatures in the 30s and high humidity, and then right on schedule, just as the weather forecaster said it would, a front came through around 6 pm on Friday with thunder, lightning, high winds and heavy rain; and the temperature on our balcony dropped nearly 10 C in 20 minutes or so, from the low 30s to 22 C. Already it almost feels like an autumn evening. The holiday weekend will be much cooler, but at least some of it will be sunny, and it will be much more pleasant than the oppressive heat and humidity we've had all this week.

This year has been very different from any other in our experience. No interesting travels to exotic destinations, just a shut-in time for Wendy with a slow but relentless decline in health and vitality; she sleeps a lot, has no energy, has lost a great deal of weight as her muscles waste away and she has become less and less able to do things for herself. But on the positive side, she has no pain whatever, and her mind is as sharp as ever - even if she has some difficulty telling what day of the week it is. For her, every day is much the same as every other day. Lately her speech has become increasingly difficult to understand, and she has had increasing difficulty articulating her words, because she is losing the nerve supply to the muscles she uses to speak. So I was very pleased indeed to get a phone call today from Margo Butler, the speech language pathologist at the ALS Clinic, to tell us that the speech synthesizing device earmarked for her has arrived. We have an appointment to get accustomed to it, complete the paperwork, etc, first thing on Tuesday morning, after the holiday weekend. This speech synthesizer is a complex electronic device that would cost somewhere between $25K and $30K if we had to buy it. The way the Ontario Health Insurance Plan works is that we get it on loan from an equipment pool for an annual rental fee for as long as we need it. If we program it appropriately, I think Wendy could even use it to send and receive email, but we will find out on Tuesday whether that would be possible with the machine Wendy is getting. Stay tuned for further bulletins on this.