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.

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