How Bill, Meg and their daughters met the challenges of motor neurone disease

    Bill's first symptoms that I knew about were after open heart surgery to replace his aortic valve with a human valve because it had scar tissue blocking it and he had been born with an aortic valve with only two cusps instead of the intended three. Of course, when he couldn't transfer out of bed or lift a jug newly home from hospital I problem -solved first, got him aids to get around the evident problems and asked questions after. Then we thought he was one of the one percent of people who have open heart surgery and end up with shoulder nerve damage.

      We were wrong -but it took two years to find out and we had by then with progression to his left arm and no sensory involvement-a much nastier prognosis -a progressive Amyotrophic Lateral Sclerosis , already giving electro-physiological symptoms of future leg and tongue involvement. Were it not so! We were in our fifties with daughters respectively in their early and mid teens. Our families were dead in my case and interstate in Bill's.

      We had read extensively in the clinical literature about auto-immune motor neurone disease and slow progressing forms. Bill did not have them. We then dealt with the arm weakness.

    He was the quality assurance manager of a start-up medical electronics company where he was setting up its financially critical quality assurance system, a most valued employee.  I was getting awards and journal publications for innovative community projects that I had set up with a long lead time, finishing a Master of Public Health degree, had got our group a good research grant and was moving beyond high input parenting into reclaiming my career. The context was that I was working and doing a higher degree in Public Health and Bill wanted to keep being a parent, a highly valued engineer -and my partner. I wanted and loved him.  This was a family where we both were around the peak of our careers.

      Of course the diagnosis impacted hugely on us both - never mind our adolescent daughters who already idolised their Dad and both were still too young to have the adult-adult relationship with him they now bitterly regret missing!   At first our search for other diagnoses meant denial; then despair and then a coming to terms with what we faced as a family. (try 1999-early 2000)  This was a hard course, but our notes of those early days show that Bill wanted to maximise his life around the disease, support our aspirations for our daughters and make the most of the life that remained to us together.  Bill's reactions included grief and depression and anger. He meditated. He researched the challenges and their solutions. He problem solved. We both did. As he lost the use of his right hand he taught himself to write left-handed.

    We are residents of Sydney, Australia and New Zealand is our volcanic nearest neighbour.

    We planned a family holiday to New Zealand for January 2000 for 2 weeks. Bill was still driving so we hired a car and shared the driving. The holiday included 5 days in the North Island concentrating on the volcanic belt and the rest touring the South Island focussing on the fjords and glaciers.

    There had been plans to do quite a lot of walking in the South Island.  In Tongariro National Park in the North Island we had a short walk of a couple of hours and Bill sustained a fall, requiring both 18 stitches in his forehead and a 100km  (50 miles) trip by ambulance to the nearest doctor.  Bill had neck weakness and an ineffective right arm, both impairing his balance. He did not recognise that he had the beginning of leg weakness also. He sustained a blow to his confidence and some shock and curtailed his walking trips after that.

  During 2000 with growing weakness in this left hand he used built up cutlery, tried gadgets to assist with doing up shirt buttons and turning door  knobs. He used a key holder for the car ignition, another for the front door. He considered an electronic door opener, evaluated options then rejected them, because he would soon need another person to drive him or travel with him in a taxi. The girls started doing the shopping with their father. He supervised and suggested items while Naomi (17) tendered the ATM card at the checkout.

    When we holidayed in January 2002 in accessible holiday units, Bill was housebound much of the week but he, his brother and sister all saw a lot of each other in a relaxed setting and there were birds to watch. We cruised the  local harbour to see dolphins and much enjoyed the experience.

    After our January 2002 holiday, in the months before Bill's death he lost the ability to use the computer because his left index finger/thumb had become too weak to use a string switch. His control of the wheelchair was becoming unreliable because of the same weakness. He had been avoiding using the scanning Light Writer for the same reason.  His use of his  eye gaze chart required more effort in interpretation because his vocalisation was more indistinct. Life was becoming harder and pain more constant. Sleeps were becoming difficult again and I was fatigued and emotional when the night had been disturbed, while Bill was withdrawn and dozed by day. Friends came twice a week to read to Bill and he looked forward to this. The advent of taped and recorded books into Bill's world restored his access to the world of others' imagination and he made regular use of it. We were using 44 hours a week of care.

    Still we went out occasionally: to a play, to an all- Ravel concert matinee, to see movies. How grateful we had become for good wheelchair accessible parking and theatres. Saliva management was becoming a problem, so we were using Robinul subcutaneously (0.5mm) with a butterfly cannula once to twice daily. A bowel management program was needed and Bill was not ever comfortable for long before his neck brace, arm sling or back support or neck support needed adjusting.

By March 22 I  had started carer's leave to be home with Bill -but only for one day before he died. He had been looking forward to me being home and had said so. His death was anticipated, but not in the way that it occurred, but at least it was in Bill's own bed and occurred without him waking. Meg had said to Bill  that she loved him before they went to sleep and he had replied that he loved her too. There is a big hole in our lives but four months on we are learning to live with it. Bill wanted me to go back to work and I have.

"Learning is finding out what we already know. Doing is demonstrating that you know it. Teaching is reminding others that they know just as well as you. You are all learners, doers and teachers."  Richard Bach

BACK TO CALS STORIES