'Lucky' man takes part in Ice Bucket Challenge
YOU do not often hear someone describe themselves as lucky to be diagnosed with a chronic illness, but that is exactly how Mark de Haas looks at it.
Mark has multifocal motor neuropathy, a condition where muscles in his extremities gradually weaken.
It could be worse. It could be motor neurone disease, another gradually debilitating illness.
Treatments are available for MMN, but so far little can be done for MND.
The coin of fate could have landed either way for Mark when he went to the doctor with a weakness in his shoulder four years ago.
"They all thought I had MND and I had all the tests and we thought, 'Let's hope it's the other because at least you've got a chance at treatments, whereas with MND, it's a short-term death sentence'," he said.
The MMN was not only the lesser of two evils, it even did Mark a favour, leading doctors to discover a brain tumour that until then had produced no symptoms.
"They initially did an MRI scan to see what was wrong with me and found the tumour, but then the doctor said that where it was, it couldn't be causing the problems I was having, so that led them to test me for motor neurone disease," he said.
Mark and his wife, Kim, who both work at the Cosmetics Plus head office at Caloundra, took part in the "ice bucket challenge" yesterday to raise money and awareness for amyotrophic lateral sclerosis, or motor neurone disease.
He admitted that until four years ago, he had known nothing about either MND or MMN.
Although Mark escaped with MND's milder cousin, his Melbourne-based brother-in-law Brian Kane was not so lucky and in a double whammy for the family was diagnosed with MND a year ago.
He has been forced to give up work and now walks with aids.
Mark's tumour is being monitored and prevents him from undertaking some treatments that could aggravate it.
But treatment with intravenous immunoglobulin allows Mark to continue to work and lead a relatively normal life.
He attends hospital for six hours once a fortnight for treatment and gets bigger boosters with a five-day spell in hospital once every three months or so.
He has calculated he has spent 200 days in hospital during the past four years, but he says it's been worth it.
"At the moment I've just had a boost and I'm about 80% normal," he said.
"I look normal, I feel normal, but I haven't got full strength.
"But when the illness kicks in, I can't even hold a coffee cup."
He found the "cycles" of the illness a little difficult.
"I have treatment and come back to semi-normal, and then it gets taken away from me, and then I have treatment and it comes back, but I never know how much I'm going to come back," he said.
Mark and Kim admit that the past four years have taught them much about resilience and life.
"Everything we've been through - we've been through thick and thin, upside down, inside out - you get through," Kim said.
"We still live life and we're really happy."