Max Humphreys

What is your role on the Committee and what does it entail?

Initially I was the only carer to be elected to the Committee, I see my main role as keeping the perspective of the carer on the agenda.

Can you briefly share your GBS/CIDP experience?

My wife Jane had been working in Brisbane for a couple of days and we had arranged to meet for dinner. As she sat down in the restaurant she commented that she was so exhausted she had had trouble signing the CabCharge docket and during the meal she had trouble using her left, dominant, hand while eating. When we awoke the next day she was feeling weaker rather than rested and had some difficulty showering and getting dressed. We called our GP to make an early appointment and, after sending us down the road for a few scans, we returned to his office. He concluded that, although he had not previously seen a case, Jane may have GBS. He said that we should go immediately to RNS hospital for further tests and diagnosis, because the disease could develop quite rapidly. I felt an underlying panic of the unknown, but also a certain relief that it was not a stroke.

At RNS the GBS diagnosis was confirmed. I recall helping the young doctor do the lumbar puncture. Although I must have met the neurologist, I can’t recall the meeting but do remember being told that she may have breathing difficulties. I also recall sitting in a daze next to Jane in the stroke ward later. I must have eaten but can’t recall this either but I do recall asking the nursing staff how Jane would let them know if she was having trouble breathing. They had given her a call button buzzer but by now she couldn’t press it - but she could still speak. It was very late and they wanted me to go home. I agreed to go if they moved her bed up to their main station so she could call them if they were needed and, when they finally did this, I left. The next morning when I called I was not surprised to hear she had been moved to ICU but I remember a sense of irrational panic. Irrational, because I had been told that the there would be a rapid decline but eventual full recovery.

What was the toughest challenge you faced during your wife’s recovery?

I think it was believing that, despite all signs to the contrary, Jane was going to recover.

How did you overcome it?

Jane’s constant optimism despite all the signs and life support tubes, made it seem that there was hope.

What inspires you every day?

Jane’s determination to improve, since despite the initial promise of full recovery she has been left with only partial recovery of her left hand and some loss of control in her right.

Do you have anything else you would like to share?

Because GBS/CIDP is an unusual condition with rapid onset, carers need easy, accurate information ASAP to assist them to believe in the healing process. It is difficult to see someone you love deteriorate so completely but very inspiring to see them recover.