by Tim Lamble and Michael Bradley
MS is Michael’s burden. And it’s also the bridge that led him to reclaim his life.
Sixteen years ago, in his early twenties, Michael was put on psychiatric drugs, though he was never actually diagnosed with mental illness. Spots on MRI scans were not followed up at the time.
When Michael and I met, I accepted the received wisdom that he had bipolar disorder. But after we had lived together for five years, I saw no evidence of the disorder. With a doctor-friend on side, we lowered the psychiatric drugs. All we found was that Michael became more ‘present’ – not manic and not depressed.
I thought then, ‘This is strange: Michael has two university degrees, and a postgraduate diploma. But he works as a casual supermarket cashier’. I wondered if, instead of mental illness, might there be some cognitive problems that held him back? It took a year to find the right time to open the issue with him.
A neuropsychologist conducted exhaustive tests, and reported ‘consistent and clinically significant levels of attention/executive function compromise’. So we had explanations for, amongst other matters: unreliable short-term memory, tendency to conflate ideas and events into one, difficulty in planning and in holding information whilst he mentally manipulated it.
And she said, “Michael’s current cognitive difficulties would be exerting a very significant adverse impact on his present ability to function beyond the more routine aspects of day-to-day life.” There it was: a bombshell.
‘The report was very frightening for me’, Michael recalls, ‘but also a relief to have an explanation of what I had experienced for many years, but was unable to put into words.’
In 2013, within a week of the report, Michael had his first overt MS event: loss of balance and slurred speech. Was this an example of an MS event being triggered by a big emotional challenge?
Sometimes the ‘Universe’ steps in to help. The local hospital had a casual visiting neurologist. She conferred with neurologist John Parratt whose specialty is MS. John diagnosed relapsing-remitting MS, and commented that ‘This didn’t start last year; the lesions started maybe ten to fifteen years ago’. That’s also when the psychiatric drugs were prescribed.
What had been medicated as mental illness for more than a decade was really cognitive problems caused by MS.
Apart from MS, Michael also has had pituitary problems for most of his life.
He was diagnosed in 2000 with panhypopituitarism (decreased secretion of all pituitary hormones), which requires us to closely monitor the balance of Michael’s daily fluid intake and synthetic antidiuretic hormone medication. After three serious incidents and five differing opinions, we narrowly avoided hospitalisation the last time by taking charge ourselves. Our GP suggested, ‘Medicine is a service industry. If you don’t get the service you want, or need, you go somewhere else’. So we did.
We have continued to be selective about our doctors; to be a ‘difficult patient’ as George Jelinek phrases it. However we prefer to think of it as being a ‘difficult person’, because if we see ourselves as a patient we believe we are accepting a bit part in the dramatic theatre of medicine, where the doctor is always the lead player. We have learnt to seek collaboration.
Michael says, ‘Shop around for a good doctor – not just someone you have seen for 20 years. Your life is worth more than poor tradesmen.’
In the last few years we have developed these criteria for selecting a doctor:
Is the doctor really competent and up to date? Learn about your problem, so you know what questions to ask.
- Can, and will, the doctor explain things clearly; and clarify when we want to know more?
- Is the doctor prepared to give sufficient time to answer questions?
- Is the doctor readily available?
- Is the doctor prepared to be a collaborative partner in your healthcare?
Attending George Jelinek’s MS retreat at the Yarra Valley Living Centre in October, 2013, we thought we were going to eat boiled lettuce and braised air, but the food was exquisite. And what we learnt about MS and life was invaluable. We changed our diet the day we left the retreat.
George’s plan fitted us well, because we already meditated every morning and evening, and we followed the precepts of Buddhism. Additionally, we had taken personal development courses that offered various ways of looking at life. One significant learning is to let go of old beliefs that don’t help you in life.
Michael says that, ‘With the fear of cognitive problems hidden, I went along with the role set for me by others: sick, handicapped, mentally ill, and irretrievably dependent. For some years now, increasingly I have not wanted that sort of life. There is more to life for me than sickness. I especially benefitted by consulting people who had no pecuniary interest in maintaining the psychiatric ‘diagnosis’, or who simply followed something written earlier by someone else.’
Michael is now 38, has monthly infusions for MS, and is doing cognitive rehabilitation therapy with a neuropsychologist. He is well, and we attribute this to George Jelinek’s plan.
Main image: Michael at the Yarra Valley Living Centre, OMS Retreat, 2013. Photo credit: Tim Lamble
Above left: Michael and Tim with Mount Twynam on the horizon. Photo credit: Paul Daniel.
Above right: Michael crossing the Snowy River at Illawong Lodge. (Tim designed and built the bridge.)
Photo credit: Tim Lamble.