Alan’s struggle to obtain a diagnosis
Now living in Wokingham Alan, aged 81, comes originally from the northwest of England - a known hotspot for Paget’s disease. With no known family history of the condition, he was diagnosed with Paget's disease a few years ago. Alan said, “I have a twin brother, but he did not have Paget’s. My Dad died when he was 61 so perhaps he didn't live long enough to know if he would develop it or not.” Alan married his wife Margaret at 25, and together they purchased a plot of land and over a four-year period built their home. They have two daughters. Living close to the Lake District and the Yorkshire Dales they enjoyed walking in their spare time.
Working life
Alan left school at 16 and went into his father’s engineering business. On completing his apprenticeship, he went on to become a technician as part of a team designing and building research equipment in the physics department at Lancaster University. He later moved to Berkshire to join the NHS as an engineer. He was sponsored by his region on a four-year honour’s engineering degree course. On completing his degree, he continued to work in London at the regional offices designing and project managing the installation of services within newly-built hospitals. The degree course and the cost of commuting to London had depleted their savings and financial struggles led him to seek alternative work. He became a Chief Engineer at a new university teaching hospital in Saudi Arabia. Alan went on to become the General Manager of the medical services division of a large international company. He later purchased and ran the consultancy part of the business until his retirement aged 63.
Leisure activities keep Alan active
Having to travel overseas at short notice made it difficult for Alan to join any group leisure activities. This combined with the enjoyment he got from designing, making and building things led to him spending his leisure time on “projects” including renovating a house and, together with a friend, building a 38-foot boat. In his retirement, he now spends much of his spare time in his workshop making and repairing things for family and friends. He also enjoys woodcarving and leatherwork. Examples of his craft, including a carved kingfisher and the carved and painted treecreeper are shown in the image. He said, “Carving, making and repairing things keeps my brain and hands active”.
Obtaining a diagnosis
In 2017, Alan began experiencing hip pain, attributing it to wear and tear associated with ageing. His GP agreed with this. Alan had annual blood tests and was told that everything seemed okay but the GP indicated that the liver function tests were showing that he needed to control his lifestyle and drink less alcohol. Alan never drank very much so he was confused by this and explained that to his GP, however, the annual advice didn’t change. He knows now that it was his alkaline phosphatase (ALP) that was raised and that this can be raised if Paget’s disease is active. We know from our Paget’s Nurse Helpline that Alan is not alone in his experience of being asked to cut back on alcohol when in fact he drank very little.
Alan’s pain increased and in October 2018 he recalled coming home from holiday feeling worse than when he had set off. A few days later he discovered that he had a urinary infection and was prescribed antibiotics. These didn't help so he was referred to a consultant. The consultation uncovered a slight abnormality with his prostate so he had an MRI scan. When he returned for the result, his consultant asked if he knew he had Paget’s disease. He didn’t and so his consultant explained that it was a problem with his bones but there was no cure. He went home happy that they hadn’t found prostate cancer but feeling resigned to a life of pain and increasing immobility.
Discovering the Association helped Alan obtain treatment
It was Margaret who decided to do some research on Paget’s disease and found the Paget's Association. Alan remembers, “I became a member as soon as I could and went to a Paget’s Information Event in York”. Empowered by all this new information, Alan achieved a referral to a consultant at the Paget’s Centres of Excellence in Stanmore. The pandemic delayed him being seen, have tests and receive treatment. However, a bone scan eventually showed Paget’s disease in his left pelvic bone. In 2022 he had successful treatment, an infusion of zoledronic acid. Following this he was delighted that his pain had largely disappeared apart from an occasional ache. A follow-up blood test in December 2023 showed that his ALP had gone down from 193 to 54 (normal range around 30-130 although due to a variety of measuring techniques, reference ranges may vary slightly between different laboratories. You can ask what your level of ALP is and what the normal range is).
Alan decided to help others by taking part in the Pain in Paget’s study and by becoming a Trustee of the Paget’s Association. In June, Alan spoke at our Paget’s Information Event in Cambridge. He reflected on how he should have been alerted to the problem earlier, not only by his GP but perhaps also by the fact that he had one leg shorter than the other. This was discovered because he had visited a particularly excellent clothes shop whenever they returned to north Lancashire where Margaret liked to stock up on trousers. Alan decided he would have a pair from the men’s section. Measuring his legs the salesperson declared that Alan had one leg three-quarters of an inch shorter than the other. Was this the first indicator that something was amiss.
A simple message
Alan’s message is simple, if you know anyone struggling with bone pain, encourage them to be persistent until it is investigated properly rather than assuming it is an inevitable product of advancing years! Or the result of inaccurate assumptions regarding one’s lifestyle.