I have not seen Peter for 10 years, since he and Mary bought their villa in Spain. They have kept in touch by Christmas cards and the occasional post card. I had despaired of Peter ever moving out his familiar comfort zone in the North of England, but he overcame his demons and they have been very happy there.
Last year Mary had written to tell me that Peter’s health had deteriorated. He was much more weak and unsteady on his feet and his neurologist had diagnosed Motor Neurone Disease, a progressive order of the cells that control the movements of the limbs and also the muscles of the neck and throat. Within six months, she could no longer manage Peter at home and he moved into care.
In her latest letter, which I received this week, Mary had written, ‘his breathing is shallow now, his voice is weak and he is coughing rather a lot. This is mainly due to his throat and neck muscles losing strength. He’s also losing bladder and bowel control. His kind and lovely neurologist says she’ll help him all she can with painkillers and sedation as and when necessary but, when the time comes, doesn’t think he should go for the feeding-tube or breathing-mask options. In general he’s amazingly stoic about his situation although he understandably gets upset from time to time.’
I feel so sad that Peter’s health has gone into such a rapid decline. It must be so emotionally exhausting for Mary watching his strength ebb away and feeling powerless to prevent it. She is thinking of taking a few days off to visit friends back in England. I encouraged her, saying how important it was to look after herself and build up her resilience to face the inevitable.
But – and this is always a doctor’s dilemma – could I have seen this coming years ago and could I have done anything to prevent it?
Peter had featured in my book, Sick and Tired: Healing the Illnesses Doctors Cannot Cure, (2005). This is what I had written back then.
It is often not just one event or situation that makes people ill, but a whole cascade of setbacks and losses that dismantle their sense of identity and seriously threaten their ability to cope. Peter was referred to me with a raft of symptoms. He was unsteady on his feet, suffered from shaking of his limbs, had abdominal pain, frequent belching, he was constipated and ate very little food. He had lost three stones in weight in the previous year and seemed to be intolerant to most of the foods he used to like. Hospital investigations had failed to reveal any obvious disease and allergy testing had proved unhelpful. But as I got to know Peter better, it became clear that he was also suffering from ‘what had happened to him’. Through therapy, he gradually came to recognize the events that triggered his symptoms. Social encounters made him fearful of rejection and tended to induce shaking. Feeling controlled by others would cause belching and rejection of food. Hypocrisy, especially in authority figures, could bring on attacks of diarrhoea because this reminded him of his father. Recently, while watching the Prime Minister on television, he felt so furious that only the urgency of his bowels prevented him from throwing an ashtray through the screen. He did not feel in control of his emotional and physiological responses and that terrified him.
Peter had been brought up in a strict Roman Catholic household. He was devoted to his mother but feared his father, an elder in the Church. He was a rather sickly boy and was bullied at school, but he enjoyed his time at University, and within a few years of leaving had married and settled down to life as a teacher and a father. His current illness had come about as a result of a sequence of losses and life crises that had eroded his self confidence and undermined his ability to cope. He no longer had the mental space to think about things clearly and so his body just reacted to events.
First there was the collapse of his marriage coming after years of bitterness and character assassination. This led to a rather distant relationship with his teenage children and months of bitter wrangling though solicitors. Then, that same year, his mother, to whom he was devoted, collapsed and died. He was devastated and a few months later he took early retirement from his job as a schoolmaster on the grounds of ill health. Within a period of just over a year, the key components of Peter’s identity had been dismantled leaving him with no substantial relationship to hold on to. But he survived it all, helped by his strong religious faith and his love of rambling and birdwatching. Five years later, Peter got married again. Although their relationship was close and happy, marriage to a non catholic brought about rejection from the church that had formed the backbone of his life and also the disapproval of his father. An intensely proud and private man, Peter tortured himself with shame and guilt. He keenly felt the injustice of his father’s behaviour and the hypocrisy of The Roman Catholic Church at not recognising his union with Mary. He was unable to relax and enjoy the pleasure and companionship that his new marriage offered him. His sense of grievance went round and round in his head, wearing him down, and leaving him unable to see things in perspective. He felt under attack from his father, the Church, his children, but also from his own feelings of unworthiness.
In the absence of any obvious proof of disease, I had tended to see his illnesses as bodily representations of his loss of faith. The devastating sequence of life changes that Peter had experienced seriously challenged his sense of identity.
For a long time, he was unable to accept his losses. Neither was he able to trust the safety of his new relationship and home. At times he felt so threatened, he would interpret every change as a possible disaster and react with extreme anxiety and anger, while at other times he condemned himself to such an onslaught of self recrimination that he was overwhelmed with feelings of hopelessness. Such feelings became the dark glasses through which he viewed his world; everything that happened he saw as proof that he was condemned to a life of misery.
But now ten years later, could I have regarded his illness in a different way? Is there anything I had missed? I read my notes again. Peter had had constipation since 1995, accompanied by very severe abdominal pain and bloating, often at night. He felt like his whole gut was blocked He also suffered from insomnia and when he was bloated he got pain across his chest and down his arms. These are not ‘typical’ symptoms of IBS, but what are?
From the age of seven he had experienced nocturnal epilepsy that was difficult to control and was treated with a cocktail of powerful anticonvulsants (phenytoin, phenobarbitone and Mysoline – another barbiturate) for many years. In his thirties, he was afflicted with severe back ache due to a prolapsed disc, but he didn’t suffer from constipation, insomnia, drowsiness, headaches, irritability, incoordination and loss of balance, until the time of his divorce. The possibility had crossed my mind that these symptoms might also have been side effects of his anticonvulsant therapy, but there was such a strong relationship with life trauma and in any case his neurologist would have picked that up. It was, however, notable that the improvement of several of these symptoms, notably the constipation, abdominal pain and drowsiness, was not only related to the therapy but also the withdrawal of phenobarbitone and Mysoline. Later phenytoin was replaced by a therapy with less side effects, but his incoordination, which was probably related to the neurological effects of long term block of folate metabolism, caused by the phenytoin, was not improved.
But what of his motor neurone disease? I find it difficult to believe this is entirely unrelated to his previous medical and psychological history. The literature on motor neurone disease does not mention constipation as an associated feature, but it does mention back ache and heavy metal toxicity as possible causes. The link between lead toxicity and neurological illness was documented in ancient Rome and some have even suggested it was responsible for the decline of the Roman Empire. The painter Caravaggio, who used lead based pigments, is thought to have died of lead poisoning. Lead poisoning also causes constipation. Lead is still a component of paint, and was until recently added to petrol in the UK to improve combustion. Many old dwellings still have lead pipes. Since the latter part of the 20th century, lead poisoning has declined in Britain, but heavy pollution is found in the air and the soil around smelting sites notably in the north east where Peter grew up and lived for many years. An Xray of Peter’s long bones could establish whether he had lead poisoning, but this would only be of academic interest now. The neurological effects of chronic lead poisoning cannot be reversed and it would be unkind to re-open the case.
But there is another link. While looking up more recent literature, I found that changes in the composition of the microbiome have been implicated in motor neurone disease. In particular a neurotoxin produced by Clostridium spp can attack the cells that control muscle movement. Clostridial species may proliferate when beneficial bacteria are depleted by antibiotics or a diet low in fruit and vegetables. Beneficial bacteria also produce folate and vitamin B12. So the combination of phenytoin which blocks the actions of B12 and folate on the spinal cord and the reduced of production of vitamins in the colon caused by a depleted microbiome could result in permanent incoordination.
Disease is rarely a simple single cause and effect relationship. Several factors coalesce to bring about pathology and symptoms. The good thing is that Peter overcame his feelings of guilt and shame and enjoyed 10 years of and happiness and reasonable health with Mary in Spain, but the long term effects of anticonvulsants continued to impair his coordination and the possible ingestion of high doses of lead earlier in life plus his restricted diet may have been responsible the the development of Motor Neurone Disease.
Hi Nick, very interesting post, I think its always easy to retrospectively look back and think ‘what could I have done differently’, hindsight is a wonderful thing, but i’m sure you did all you could to help Peter based on your experience and intuition. You do raise an interesting point though in terms of the long term effects of medication. I have been on a low dose of Amitriptyline for the past 6 years for my IBS and though it has helped to some extent I do wonder what long term effects this might have and if I should consider an alternative or ‘tapering’ off, I’ve tried before but the withdrawal was tougher than I expected.
Thank you for your comment Matthew. As a general rule, long term medications always tend to have knock on effects as they change the responsiveness of chemical receptors. For example, amitriptyline can cause nervousness, insomnia and anxiety as well as constipation. If you can tail it off or at least cut it down, it would probably be better.