For some time, Don has been pressing me to arrange a trip to Griffith (in the Riverina) because his 97-year-old mother is in a nursing home there, and we haven’t seen her in over a year.  I’ve tried not to be brutal and say, You simply cannot travel any more!  But I had a sudden inspiration, that in fact if there was something drastic such as a funeral, well there actually is a way.

I told Don that I ought to phone his neurologist and discuss getting permission for a course of methylprednisolone if there is a sudden need for Don to leave the nursing home, eg when his mother dies and he wants to attend the funeral.  It would be an 8-hour drive each way plus at least one night away.

In my opinion, methylpred is like a miracle drug for multiple sclerosis.  When Don, bedridden, was put onto a course of treatment last year, he was standing (with assistance) the next day, and was shuffling along the corridor (with a walking frame and two assistants) a couple of days later.  It was unbelievable.

Only problem with methylpred:  It doesn’t last.  Average duration of the improvement is 9 weeks.  And there are considerable side-effects, eg it depletes the body’s calcium (so he is still on calcium supplements 13 months later), possibility of organ damage if used long-term, and the mood swings during the course of treatment are terrible – swings from anger to despair to weeping with joy, emotions out of control completely.  And growing evidence of an actual deterioration in the condition subsequently.

To my surprise, Don didn’t even consider my bright idea.  He just said matter-of-factly, “No, when the time comes, you will have to go with our son and represent the family. I won’t be able to leave here.”

He has accepted the sad reality with his usual equanimity.  Thanks Don, for making it easy on us.

Sometimes I think the multiple sclerosis is causing Don a complete personality change.  Perhaps it’s the depression which seems to permeate all day, every day, with feelings of despondency and an untypical lack of interest in life, church news and current affairs.  Perhaps it’s the lingering effects of the methylprednisolone treatment which caused such huge and volatile mood swings.  Perhaps it’s the MS itself, that causes confusion and fogginess in the brain and means he often can’t follow conversations where previously he would have relished the repartee, or get the point in jokes where previously he would have been the one to make the witticism.

So it was vastly encouraging when Don was made the target at a little exercise they did at church the week before we moved from Muswellbrook.  The only church he can get into with wheelchair access at Muswellbrook, is a sort of of ecumenical informal family service at the Anglican church on Sunday evenings.  A couple of people were secretly selected by the minister, and for each one, the three defining characteristics of that person were read out.  Everyone had to guess who the person was.  (…. This of course led naturally to the defining characteristics of Jesus, and of his followers.)

The minister read out:  “Who is the person defined by these three adjectives:  interesting, compassionate, humorous.”  A brief pause, then a chorus of several people saying at once, “That’s Don Dufty.”

Interesting?  Yes, the most widely-read person I have ever known, prides himself that whoever he meets, he can immediately find a point of contact with that person and talk about their area of interest.  But nowadays he can’t read (bad eyes) and often loses the point of an article when I am reading it to him (the MS).

Compassionate?  Yes, in fact his whole ministry was grounded in compassion, and he has often found himself on the outer — yes, even in the church!  — because of his championing of the underdog.  But nowadays the debilitating condition means we are both wrapped up in our own problems and not so aware of others.

Humorous?  Definitely — that dry humour and the quirky unexpected remarks were part of an inimitable style.  But nowadays the sharp wit has gone and it can be hard for him to follow even the most obvious humour.

And yet, for people who have only known him over the past few years, he was instantly recognisable by those three adjectives.

Very reassuring, that little exercise.  What it meant to me was, that all the difficulties and changes brought about by the multiple sclerosis are nothing but an overlay, and he is still the same person underneath it all.  That the defining characteristics are still recognisable.  That there is an unchanging core at the heart of a person.  That the qualities that made Don be Don, do still define him even when buried and hidden by the changes made by this insidious disease.

They have put Don onto a four-day course of methylprednisolone, and the improvement is nothing short of miraculous.  Within 12 hours, when I visited, the physio had him standing for 5-10 seconds, in fact he did 10 stands, all of them steady and controlled.  He was able to take a few steps both forwards and backwards.  When he came into hospital a fortnight ago he seemed to be in a state of complete muscle collapse, unable to stand much less walk, having trouble even holding a cup of tea because it was too heavy.

More than the mobility, Don was himself again.  He was bright and alert and interested in everything, chatting to the other men in the ward, joking with the nurses, telling the tea trolley attendants what a marvellous job they were doing.  He asked me to read to him from the paper (did I mention his vision is terrible now) and then the Bible reading for the day, which was John 21, the risen Jesus appearing to the disciples at daybreak when they were fishing.  When I had finished reading, he mused, “Those moments at dawn, they are very special.  I’ve had moments of revelation at dawn, more than any other time.  You’re more attuned.”  Mind you, he has always been an early morning person, and I think one of his frustrations of our life together has been that I was never up to join him in those early morning walks and the magic moments at dawn.

I feel I am a new person.  I have got the old Don back, the real Don.

I am not deluding myself that this is a cure, or even that the improvement is long-term.  Being a steroid, the methylpred has some serious side-effects, such as depleting calcium in the body so he needs to have a bone scan later, sending the blood sugar crazy so the diabetes goes out of control, insomnia, mood swings with emotional high and lows, high blood pressure.  Don slept badly, his blood sugar is 16 and rising, and he started to weep as I was leaving – all classic effects of the treatment. Some information is at this website:  www.medicinenet.com/methylprednisolone/article.htm

Because of the severity and seriousness of the side-effects, the guidelines recommend that the lowest effective dose should be used for the shortest time possible, and that it be administered no more than three times per year at maximum.  And, sadly, the improvement does not last as a rule. www.geocities.com/HotSprings/3468/mri-abstr.html#10  But for now, we are happy to see any improvement and life is better than it was two days ago.