A Life with Robert (Bob) Lamb

13/10/1948 – 21/12/ 2018

Bob and I met on 3 December 1966 at the Kingsgrove Methodist Church Friday night dance for teenagers, I was only sixteen and had commenced a cadetship in Survey Drafting. Bob aged eighteen was also a Draftsman, so immediately I realised that we had similar interests. We also shared a love for social dances and competition tennis, and metal detecting and fossicking, which we pursued over the years. Sparks began to fly, so on 9 January 1970, we married.

Before we were married, I cannot remember missing a weekend together. We played competition tennis on the Saturday, and on the Sunday we would meet up with friends at the beach. During this time, we were both studying, at night, so our little secret rendezvous in the morning was so special.

In 1971 we moved into a new home at Seven Hills in Sydney. As we both grew up in the St George area, our parents had no idea where Seven Hills was, so one Sunday, we took them out to our half built new home. They thought we were taking them to the ends of the earth, especially when we had to give way to a horse drawn cart.

In 1973 our son, Craig was born and in 1975 our daughter Michelle arrived. During that time, our life was just so busy, meeting the demands of two growing children. I was a stay-at-home mother until 1981, when I returned part time to promoting school photographs. Bob was working as a Mechanical Design Engineer and Draftsman. In 1981, we decided to set up our own contracting business, with Bob as the Managing Director.

In 1983, I developed the urge to return to my previous career in Survey Drafting so I scanned the Sydney Morning Herald. There were no home computers or mobile phones then. I rang the first ad I saw, which was for a temporary position at the Housing Commission. I was successful and asked if I could start the following day. Bob was so surprised with my success. I even returned to Sydney Technical College to complete my Associate Diploma, at night. I was now a mature aged student.

Things were going great until February 1985, when our lives would change for ever.

Every year during the January school holidays, we would pitch our tent near the beach in the East’s Beach Caravan Park. We had booked the same spot for years along with the other families who we had known for a long time. We would stay for at least three to four weeks. It was February 1985, Bob had returned to work, after feeling quite relaxed after our holiday. This was going to be the start of our life changing event.

Bob lost his memory at work, forgetting who he was, where he lived, and who he lived with. His colleague drove him to our local Doctor, who told Bob he was just stressed, however as Bob’s faculties had returned to normal. He insisted that this could not be the case, so Bob had a brain CT in the same afternoon.

Within a few hours, we received a call from a Neurologist who asked us to go to Westmead Public Hospital immediately.

It was the 3 February, an extremely muggy day. I drove Bob to Westmead and on arrival at the admissions desk, we were told that the hospital could not accept him because there were no beds in the neurological ward. We were devastated, so we returned home. Bob was becoming non coherent by this time and could hardly walk. In tears, I rang my dad, who rang all the Members of Parliament in his electorate and mine. Within an hour we received a message from the hospital to ask us to return immediately.

On arrival at the admissions area, Bob collapsed, and I thought that I was losing him then. Luckily, the Neurosurgeon was ready for him in theatre and after an exceptionally long operation on his brain he was sent to the Neuro Ward. Bob had suffered a most severe case of Hydrocephalus and required a shunt and valves to drain the fluid in his brain. The ventricles in Bob’s brain were the same size as duck eggs when they should have been the size of peas. His brain was about to implode, which would have killed him. Bob spent quite a bit of time in hospital because this condition had caused slight brain damage, mood changes, depression, and anxiety. He was now a changed personality, and it took a long time for all of us to cope.

We did survive this ordeal; however, it was Craig and Michelle who found it difficult to accept that their fun-loving Dad had changed, and they had to be careful and not make too much noise around the house. Craig was now aged 12 and Michelle 10.

In 1986 we decided to sell and buy a bigger house, closer to Blacktown CBD. We were coping quite well until 1997, when Bob developed swallowing problems and eye lid drooping. He had been assessed during the next ten years for every muscular disease that was common in Australia and was told by a leading Sydney neurologist that he was a hypochondriac. After that comment Bob suffered a severe attack of depression which caused him to be admitted to a rehabilitation facility. There he learnt a few strategies to help him cope with his illnesses.

In 2001, we decided to travel to the UK, to visit Craig who had moved to London with his job and to enrol in London University. He did very well in Actuarial studies and achieved his specialist subjects.

We had nearly given up seeking a diagnosis when we received a phone call from Bob’s gastroenterologist, Professor Cook. He asked us to bring photos of Bob’s parent’s wedding photos. This seemed so strange. We had to drive from our home in Blacktown to Kogarah, but this had us both curious, so we were prepared to drive anywhere to solve this mystery. Professor Cook had travelled to Quebec Canada to a conference where there was a seminar on Ocular Pharyngeal Muscular Dystrophy (OPMD). Professor Cook realized that Bob had all the symptoms of OPMD, so he referred him to the Genetics Clinic at Randwick Hospital, for a DNA test. Professor Cook suspected OPMD after looking at the eyes of Bob’s mother, maternal grandmother, uncle and three aunts. They all had dropped eyelids, and a few had swallowing problems, which in 1944 were diagnosed as the aging process.

After an exceptionally fast 2 weeks, the results confirmed OPMD, an exceedingly rare muscular dystrophy disease. Bob was crying with happiness because the medical fraternity had eventually found a name for the symptoms that he had endured for ten years, and he now could prove that he was no longer a hypochondriac. He was not happy that OPMD is hereditary, and we were advised to tell our children. We did tell them over the next week, however we left it up to them if they wanted to get tested. By the time Bob received his diagnosis, Michelle had given birth to Bethany and Matthew, our grandchildren.

Bob was the first person diagnosed with OPMD in Australia so doctors were practically queueing up to talk to him. At first, Bob was shy and embarrassed, however when he realised that our children and other descendants could inherit this disease, he decided to educate the medical experts, about his symptoms. Bob was often asked to participate in the final medical exam and at the conclusion he asked the doctors to go out and educate others of the symptoms of OPMD.

Michelle did get tested and was diagnosed with the OPMD gene. Craig was living in London and did not want to get tested. He changed his mind after marrying in 2010. He was negative so that was great news.

Bob’s OPMD became active quickly, firstly his eyelids had to be anchored to his brow in about six operations, because they kept dropping over his eyes, causing him to trip, going up stairs.
His muscles in the shoulders and legs were becoming weak and his throat was closing as the muscles were becoming affected. Soon Bob needed a PEG to be inserted in his stomach. He was now completely nil by mouth, using a bolus process. He progressed to a pump and bolus later.

We both had to learn to adjust to this change in our life. We had always had dinner parties and card nights, however because Bob could no longer put anything in his mouth, we all felt guilty eating in front of him. Although Bob had sudden mood swings, he was the life of the party, and a teller of funny jokes which just rolled off his tongue. He was fun and helpful at home. Bob and I would go everywhere together, even on a cruise circumnavigating Australia. We had to take eight boxes of Jevity Hi Cal for his food supply. Bob had to get used to me eating a delicious three course meal with wine.

Our marriage had ‘difficulties’ but this was mainly because we were both stubborn! I had developed Lupus, which had also caused me to become very tired. Even though we had bad days, Bob decided that he would like to have a go at Boccia, so off we both went to the Narrabeen Sport and Rec Centre and formed part of the Muscular Dystrophy Boccia Team. Our opposition was the Cerebral Palsy Team. We were defeated only by one point, however in the following 2 years, Muscular Dystrophy won by one point, so we had achieved success.

We moved to an RSL Independent Retirement Village in July 2014. We had a three-bedroom, two-bathroom, free standing house. It was designed for wheelchairs which we thought Bob may need in the future. We were the first ones to move into this amazing new village in the middle of cow paddocks, facing the magnificent Kurrajong Hills. Bob and I were so happy in the retirement village.

On September 2018, Bob and I had a normal evening and went to bed about 10.30pm. At about 2am I woke up because Bob was choking. I got out of bed as quick as I could while calling his name. I could not wake him, and he was still choking. I rang Triple O and immediately the paramedic could hear him choking. I was trying to put the bed down so I could administer CPR to him, when Bob stopped choking and was breathing again. The Ambulance arrived and took him to Hawkesbury Hospital, where the nightmare started.

On the 1 December 2018, I wrote to Bob’s Respiratory Specialist to let her know that his PEG had fallen out twice within 13 days. Bob lost 10kg quickly, causing his tummy to shrink. The staff at Hawkesbury Hospital were not familiar with Bob’s medical complications, so he was transferred to Macquarie University Hospital. Bob had also survived Prostate Cancer. Bob had fifteen episodes of aspirated pneumonia in 2 to 3 years. I visited Bob every day. Bob was once the life of the party and now he was like a broken man deprived of his retirement years. At first, he slowly faded away and then had a horrific death, choking. Craig, Michelle and I were by his side when he passed away on Saturday morning, 21 December 2018, at 12.30am. I had now lost the love of my life after 49 years of marriage.

We arranged Bob’s funeral on Christmas Eve, for a church service on New Years Eve. I anticipated that there would be about 50 people attending because of the busy time of the year. 150 people turned up on a very hot 40+ degree day. This showed how well he was liked and respected.

One regret that I have is that Bob and I never discussed where our ashes would end up. Bob loved history, so I arranged for his ashes to be interred in the collegium wall at the old historic church at Ebenezer, overlooking the fabulous Hawksbury River. He loved it there.

Rest in Peace Bob,
Sharon Lamb