Philip Cutler, My Story
My name is Philip Cutler, I am 44 years old, I have a wife Trina and two teenage daughters, oh and two cats. I live in Bradford in the United Kingdom. It all started for me when I was 19 years old. I was working as a mechanic in a garage and suddenly I was looking through a red haze in my left eye, off I went to casualty where I was kept in hospital for two weeks laying flat on my back, during this time after various examinations, the Opthalmologist decided I had, had a retinal haemorrhage in my left eye. The reason for which he did not know, but, I did hear him say that he wondered if it could be more sinister such as Behçets disease, as I’d had mouth and genital ulcers too.
So, I was discharged from hospital, however, over the next few months the vision in my left eye deteriorated so much that I lost the sight in it, then the retina in my left eye completely detached. During this time I was fortunate enough to meet my wife Trina, who is still with me now. Then I started getting Anterior and Posterior Uveitus and Retinal Vasculitis in my right eye. I had to make daily trips to the hospital for Cortisone injections to bring this under control. It was around this time that I was advised to start learning Braille in case the worst came to the worst.
In 1983 I began to notice a small tremor in my right foot. I went to see a rheumatologist although I had no joint pain at the time, she then referred me to a neurologist. I was sent for a Lumbar puncture with X-ray and dye to check the spinal column for nerve damage and lesions. The results were negative at that time. Over the next couple of years things were just ticking over with the tremors slowly getting worse, it was then decided that I should go into hospital at various times to have a very high dose of steroids by IV. I reacted quite well to these high doses and for a while the tremors were damped down. Then my neurologist suggested that I go to Nottingham for an MRI scan. I was walking with aid of a stick by this time and my speech was slurred, often people thought I was drunk.
I went back to see my neurologist and BD was confirmed by the results of the MRI scan, which showed lesions in the spinal column, brain and brain stem. A second scan later found even more lesions in the brain, brain stem and spinal column. By now the high doses of steroids had lost any beneficial affect and I had gone from walking with one stick, to two sticks, to elbow crutches and finally to a wheelchair, also I was suffering from rashes wheals numb spots in my hands, feet and legs. By 1990 all I could do was to weight bear. The tremors by now had got so violent as to be dangerous, the anti-spasmodics were ineffective.
In the early 1990’s I started having bladder problems and had to be admitted to hospital for a cystoscopy, where they found I had bladder stones probably as a result of my bladder failing to empty properly. I had to start using intermittent catheters to drain the bladder properly, then moved on to using an indwelling catheter permanently.
With the spasms becoming increasingly more violent and my body going slowly down hill I managed to muddle through until early 1996. I went to see another neurologist who suggested the possibility of an intrathecal pump device to control the violent spasms, he referred me to a pain specialist who dealt with these devices, it took a few months but eventually I saw the pain specialist who decided that I would benefit from having one of these pumps implanted. In December 1996 I went into hospital and had this device implanted. She was unsure as to if it would work as it was the first time that it had been used on a BD patient. After ten days I came home, looking forward to a spasm free life, the pump uses Baclofen (loriosel) liquid, which is delivered straight to the spine. This operation proved to be a success however there are trade-offs. Baclofen, while being a good anti-spasmodic allows the muscles to waste, and I can no longer weight bear.
I had hoisting equipment installed to enable me to move from chair to bed, also the BD was beginning to affect my right arm (weakness). The numbness in my legs had increased, and I started having neuropathic pain in my legs and feet. I had to get a hospital bed, and special air-flow mattress to sleep on, due to my now lack of movement. About this time swallowing was beginning to become more difficult, but my neurologist said it was the BD and not a lot could be done, by this time, I had lost three stone in weight. This was due to difficulty in swallowing (I really didn’t feel like eating) and I was starting to choke on food.
In 1997 I was admitted to hospital with aspirated pneumonia, the doctors said it was due to a food particle getting into my lungs and not having a cough reflex to expel from the lung. Twelve months later I found myself back in hospital, again with aspirated pneumonia, by this time my diaphragm had stopped functioning forcing me to use accessory muscles to breath. Six months later I was back in hospital with aspirated pneumonia again. After this bout of pneumonia I stopped taking Azathioprine (immuran), it was decided that the Azathioprine was too powerful an immuno-suppressant for my body to handle.
At this time it was also decided to increase my Gabapentin tablets to the maximum dose, to try and control the neuropathic pain in my feet and legs. In November 2000 I began to have problems in my right eye again, so I went to see the opthalmologist, who told me all they could do was to monitor the situation closely. By now, My left arm was beginning to feel weak and show the same neurological signs of damage as my legs and right arm were. February 2001, I got in touch with the Palliative care team to discuss pain relief, as the pain was becoming unbearable. I tried various pain relief, and I am now taking Palladone (hydromorphone hydrochloride), which isn’t too effective, I still have a lot of pain.
In March of 2001 I started feeling nausea all the time, this further stopped me eating, it too has been put down to the BD affecting the appetite centre of the brain, which also makes it that I no longer feel hungry at all, my weight continues to drop. At this time also the BD started effecting my hearing, now I have permanent tinitis and hearing loss in both ears. Due to the BD I have started to develop deep vascular ulcers, on my buttocks and sacrum, the treatment offered has been varied but not effective, leaving me in high degree of pain. Although my wife has taken care of my nursing needs for many years, we now have nurses, coming in daily, as well. I am now almost constantly bedridden and a quadriplegic, my diet consist mainly of supplements now, ie Ensures, as they are easy to swallow.
I write this story so that other BD sufferers may be able to relate to parts of it and maybe help them to understand it more, my thanks go to my long suffering wife, who puts up with this nasty disease everyday with me. I wish all you fellow BD sufferers well, and their carers too.