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Peter - Interview 38

Age at interview: 56
Age at diagnosis: 53
Brief Outline: Peter was diagnosed three years ago (2004). Symptoms started in his arms and hands, and progressed to his legs. He now uses a wheelchair full-time.
Background: Peter is a retired civil servant, married. Ethnic background/nationality' White British (Polish origin).

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Four years ago, in 2003, Peter noticed his right hand started to shake and his grip weakened. For many years before that he had a tendency to trip over and some weakness in his arm. At the time he just thought he was clumsy, but looking back he wonders if it was connected with MND. At first he thought it might be Parkinson's, and went to see a neurologist later that year. In January 2004 he was told it was MND, and a few months later when further results came back he was told it was 'atypical'. He believes this is because symptoms first started in his arms, although this has never been fully explained to him. Peter and his wife were completely shocked by the diagnosis and cried most of the night. The neurologist told him it could cause total paralysis, but Peter was even more shocked when he found information on the internet that it was a fatal condition. In some ways he feels it was better to find out some of the information gradually, rather than all at once. 

By the time of diagnosis, Peter could hardly use his right arm. His employers wanted to help him stay at work and he used arm rests to help with the computer. However, after an accident in summer 2004 when he tripped and broke his thumb, he had to take time off. He hoped to go back, but by September his arms were so much worse he had to retire on medical grounds. This was very disappointing as he enjoyed work and being with his colleagues. Over the next 12 months his legs became much weaker and by the autumn of 2005 he needed to use a wheelchair all the time. He decided not to take riluzole because of the potential for liver damage. He uses a nebuliser to help his breathing as he suffers with phlegm and finds it difficult to cough properly.

Peter's attitude is that 'doing nothing is not an option' and he tries not to think too far ahead about the condition. He remains active in a local political association, and tries to get out as much as possible, for outings to the countryside or meals in a restaurant or pub. He receives disability living allowance, and has had good support from the local social service department in obtaining aids and equipment such as a hoist and commode. He himself pays for a live-in carer and a nurse who comes six days a week, so that his wife does not have to cope with his care on her own. He has also bought a computer with voice recognition software so that he can dictate text into it. 

He has been for tests with a specialist in Germany who diagnosed that he had Lyme Disease. Peter's family is originally from Poland and he has been on many walking trips in parts of Europe such as Poland and Germany where ticks carrying Lyme Disease are common. He wonders if Lyme Disease may in some way have triggered MND, but has been surprised at the way doctors in the UK have been unwilling to discuss this with him. He feels not enough information is being routinely collected from new patients about their lifestyle and health history which could help identify possible causes to investigate. He also feels more needs to be done to give patients positive, practical advice for living with the condition.

 
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He takes noni juice and ginseng, and sour milk. He is careful about diet, but feels a little...

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I take noni juice' [which] has a lot of serotonin' and ginseng, which apparently has a beneficial effect on the muscles. I take these on alternate days. After which, in order to assist my bowel movement I take, not necessarily yogurt, because that is also a bit artificial, but proper sour milk, either bought from a Polish shop or made by ourselves. I'm also given fruit juice to drink before breakfast. After that I have breakfast which at least two or three times a week includes egg, because apparently egg white and yolk are very good for the muscle tone. Thus I frequently have boiled eggs. I also have fruit with a cereal, or various cheeses on toast, or jam or honey on toast. And that's breakfast. Then I have at lunchtime a proper meal, which usually includes fish, because fish, apparently, is more beneficial and less toxic than meat. In the evening I tend to eat rather little because I have a sedentary lifestyle and need to be careful about how much I eat. I'll therefore eat perhaps a sandwich or something.  

Now, one other thing' I drink - I won't say copious amounts - but I drink alcohol. And I refuse to be told not to. The reason for that is it's an excellent antidepressant. Wine at any rate contains a detoxifying agent, and many stronger drinks have other beneficial properties. I will not change my lifestyle in that way. In fact I'm trying not to change my lifestyle at all wherever possible, except I can't do things that I used to do. 

 

He feels 'doing nothing is not an option'. The NHS should offer more active support such as...

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I do think that my illness has slowed down. Perhaps it's just me or maybe it's just my type of MND, but it does seem to me that what I have done for myself has helped to slow it down, and that therefore doing nothing is not an option. If a patient is allowed to go home with a feeling of helplessness and hopelessness and gets depression as a result, and he or she becomes worried about what's going to happen to them, this puts the patient in a psychologically very bad condition. In such circumstances, any illness, especially a neurological illness, is likely to advance quicker than if the patient is in a much more positive, optimistic and upbeat mood. Consequently I do think that alternatives to doing nothing should be offered, for example, vitamins to take to strengthen the body's immune system, physiotherapy to help the muscles that have not wasted away, and taking part in research into the disease. There is talk about stem cell research and other research and so on, which at the moment is not practical for use on humans, but I'm sure that if patients with MND and other neurological illnesses were given [name] the chance to contribute towards future cures at least some of them would be keen to do so rather than sit and wait their turn to die. As an example of something completely ineffectual, I was offered 10 hourly sessions of massage in a local hospital, which turned out to be around 40 or 50 minutes of relaxing massage which did nothing for me and was a total waste of everyone's time.

It is evident that proper physiotherapy on a regular basis is necessary to defend the muscles that are still able or capable of some movement, and to keep muscle tone. As a result of physiotherapy taken five days a week (unfortunately I have to do it privately as there are no facilities on the NHS) I haven't lost much muscle tone. I've only noticed some muscle wastage in my upper arms and in my shoulders, but elsewhere my muscles seem generally to be holding up. A word of caution, though. My version of MND appears to be of the slowly progressing variety, and other forms of the disease which are quicker in their effects may make my suggestions less useful.

Tell me a bit about the physio. Because I think you said you arranged that yourself?

Yes. If I may say so, it's obvious that the NHS hasn't the money to employ physiotherapists on people who can be described as terminally or chronically ill. So I had to go privately. I have a Polish person who comes five days a week. He worked in a sanatorium in Poland. He comes five days a week to exercise my arms and legs and various parts of the body, and also to give me therapeutic massage.

 
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He believes Lyme Disease may trigger MND, and sometimes may be mistaken for MND, but British...

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In April 2005, as suggested by a friend of ours, we went to see a doctor in a clinic in Germany, in Hanover, Germany. This doctor was claimed to be able to help cure or at least improve the condition of people with neurological illnesses like mine. We went over there, and they did blood tests on me to find out what if anything was in the blood that might be causing this. Surprisingly it came back positive for Lyme Disease or Borrelium, a tick-borne disease which amongst its many symptoms can cause paralysis. Now obviously one can say that this is all nonsense and that he was just trying to get money out of us because it was a private clinic that we went to, but many independent people we met claimed to have had the same symptoms which greatly improved after treatment with a strong, especially prepared antibiotic. Since then we have found a number of websites which refer to a possible link in some cases between Lyme Disease and certain neurological conditions. Furthermore I've been an avid walker in woods and fields. I love nature. I've often crawled into places you probably wouldn't imagine going into, looking for mushrooms in the autumn amongst other things. It is an unfortunate fact that ticks are becoming more common in this country, probably due to climate change, and some of the ticks have parasites that can cause some rather nasty illnesses including Lyme Disease. The doctor prescribed antibiotics for the Borrelium or Lyme Disease, and other medicines which supposedly act positively on the neurological condition from which I was suffering. At that time I didn't know until I spoke to other sufferers and went into websites dealing with Lyme Disease that it can cause paralysis if left untreated. In the beginning a range of different symptoms, a feeling of influenza, rashes on the body, swollen glands, etc, may occur which may or may not come out at the same time. 

Lyme Disease sufferers can feel generally ill, but unless they can pinpoint where and when they were bitten they have no way of really knowing that they've been infected. Giving busy lifestyles they may not give their medical problem much thought until it becomes much worse, and by then it may be too late to tackle easily. Now as far as I was concerned I didn't know that it might cause paralysis.

Apparently lots of people get it on the Continent. Here it's less known because the spread of ticks is rather slower and less common, although they're beginning to be widespread in the south of England. We therefore had hope that perhaps it was something to do with that, yet in this country we were met with disbelief by the medical establishment. The idea that I might have Lyme Disease was dismissed by the medical profession in this country almost out of hand. 

Given what we had heard and what I had read in various websites concerning symptoms of Lyme Disease, this caused us to wonder whether my condition may have been brought on or made worse by an infected tick. I've had three bouts of pneumonia in recent years and had all sorts of colds that I couldn't get rid of. Amongst symptoms I did experience a lot of itching and swollen glands under the armpits. I also had frequent redness and discharge behind the ears and in my navel. I was told by my nurse, however, that it could be simply caused by the fact that I was ill. Many of the symptoms remain and many parts of my body are affected by itching. I gathered from various websites that these effects can also be caused by Lyme Disease. After I took three sets of antibiotics, which were given by injection, according to further tests done in Germany my Lyme Disease appeared to be on the way out. We therefore didn't go back to Germany again, especially as it was expensive, and having retur
 

More funding and more research are needed for MND. He believes all new patients should be...

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My experience of doctors dealing with neurological conditions is that they appear helpless to say the least in terms of giving any help to people who have neurological conditions, and certainly as relates to MND. To repeat myself, doing nothing is not an option [since the only way that patients can be helped to live longer and still have fulfilling lives is to give them some hope, however slender, and something useful to do]. Patients who have been diagnosed with such debilitating illnesses require active support from the medical profession, not only in terms of being diagnosed, but in terms of advice and help that can be given.  Judging by what I've heard and spoken to with various people in various organisations, it would appear that the idea of stem cell research and other like matters is not being actively pursued, again possibly due to lack of funding. There appears to be no attempt to collate experiences, symptoms and circumstances from each patient in order to find a common denominator which could indicate a possible cause for their illness. The members of the medical profession dealing with neurological disorders that I've come in touch with appear not the least interested in pursuing that kind of line of enquiry. That line of enquiry seems to me the most logical in perhaps advancing the better understanding and thereby later on better treatment of these neurological conditions.

 

He enjoyed work and misses it very much. He gets involved in other activities, especially...

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I mean I don't know whether, you know, if you enjoyed work or didn't enjoy it, but what kind of a difference has it made to you personally giving up work?

It was devastating. I happened to have very good relations at work with some very nice people, both colleagues of the same grade and of higher grade, including my line managers. I had absolutely no problems. They were always very understanding of the staff, so I had similar good treatment before I was ill and when I was ill. It was really more of a family atmosphere than an office, although it was run very efficiently, and we all had to a great extent good fun - well, if you can call a government department 'fun". From that point of view I was extremely disappointed to have to retire, although retirement in itself, especially early retirement, isn't a bad thing if you have the means, because then you can do things you never had the time to do in the first place. It was, however, a serious disappointment. At the beginning, when my legs were still working a bit, I had ideas that maybe things wouldn't be so bad. Unfortunately as the illness progressed it's now become more and more of a drain. I suppose there are advantages to not working. That stress has gone, although my stress was minimal compared to some.

So it's left quite a hole?

Yes.

And what things have you done? You were saying, you know, it gives you time to do things that you might not otherwise have done.

Well, it does give you time to do things that you might not otherwise have done, but at the same time if you're not able to get out and about as much as you'd like, and in ways you'd like, it curtails your abilities and your movement. I happen to be politically involved and always have been. To some extent I've retained that. Furthermore I have always been interested in various things that go on around me - in nature, in rambling, and other things like collecting little cars and whatever. So I can't say I'm bored. Life is different. Life is frustrating because not everywhere is as yet disabled-friendly. Although the law now states that public places should have disabled facilities, it's not always as easy as all that. The biggest difficulty is going to friends, most of whose houses aren't disabled-friendly, but I get round that. There are lots of pubs and restaurants around here, there are lots of walks and many places to go to which are accessible for disabled people. We have amongst other venues a favourite Thai restaurant that we go to. I've got political meetings and functions that I, or we, attend. So I'm not completely out of things, except that I'm seriously constrained in what I can do and where I can go.

 
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Sometimes he worries he has problems breathing or swallowing, but thinks it's really his...

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I do have a nebuliser for my phlegm, which may be due to a sinus problem, but for whatever reason I have it I frequently don't have enough strength to remove it through coughing. Naturally the imagination runs riot with additional problems like this. There have been occasions when I've imagined that I'm short of breath or that I've difficulty swallowing because I've got Motor Neurone Disease, and things like that. Up to now, thankfully, such apparent symptoms, except for my phlegm, have been mostly the products of my imagination. All this does affect the psyche, but on the whole I try and not think about it. I do not think much about the future, because if I did, I'd go mad. We have to take each day as it comes, because this time next year they might find a cure, or they might not. My condition might stay the same, or improve, or get worse. It's pointless to start wondering, 'What will happen this time over next year?'

 
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He doesn't get too tired unless it's a very busy day, but he gets uncomfortable sitting in a...

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I don't get tired very easily. I'm rather a bit of a fighter. However, it is a hassle to have to require someone to feed me, wash me, dress me, put me in the wheelchair, and do all the other chores around me and for me. It doesn't take so long, but with my limb muscles largely paralysed the minute that I'm moved I feel the need to stretch. It is, of course, true to say that obviously after a busy day - for instance I go for a walk and then later I've got something else on, and then I go home - I am rather more tired than I would be if I were well and able to get out myself. So tiredness comes into it. Worse, actually, are side effects such as sitting in the wheelchair for long periods, which causes discomfort in the back, the bottom part of the spine and the buttocks. That can be a major irritant and a major source of pain, which is why my nurse or carer spreads ointments on the affected parts to try to ease that situation.

 
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He fell on the stairs and within a year could no longer walk. His hand is too weak to operate a...

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I've been going with a stick for about thirty years because of chronic back pain. Whether that had a bearing on the odds of Motor Neurone Disease developing I don't know, because I've had a back condition and was in frequent pain since I was young. I was on Brufen tablets for about twenty years. In terms of the current illness, namely MND, in the autumn of 2004 of course what happened was the first onset of my leg weakness [deletion]. I'd been tripping more and more, which I thought at the time might be because I'd had a very serious pneumonia at the beginning of that year and I thought I was excessively tired and trying to get around too soon. At first I put it down to that. But the first serious thing was when I went to a friend's house and I had to go to the toilet. I managed to walk halfway up before my legs failed me and I had to be dragged up to the top. Afterwards I gingerly walked down again. That was the first time I really felt there was something seriously wrong with my legs. This was about September 2004 - no, it was October 2004. Then about a month later, in November 2004, I had to resort to a walking frame with wheels. First of all I was given one of those triangular walking aids without a seat, and then I got a proper and steadier one where I could sit down. I used that second aid until the spring of 2005, when I found that even that was becoming too hard. 

Over the spring and summer of 2005, I was finding less ability to walk at all, and from about April 2005 I started using a wheelchair on a regular basis. In about June or July 2005 I took some hesitant steps with the help of my day nurse and her husband during a walk in a local park. In the autumn of the same year, with the encouragement of, and a considerable amount of assistance from, my nurse and my carer, on a few occasions I managed to take a few steps whilst still living upstairs - we've now moved down to the ground floor. They were trying to encourage me by saying 'Well, practise what you can with your legs.' I emphasise that this was on only a few occasions and then my legs just folded, and stopped working altogether. So my last steps were in around October 2005.

Have you ever used a scooter, one of those electric scooter things, or only the wheelchair?

I couldn't use an electric scooter because my arms by then had failed. Following on my right hand's deterioration my left hand started to fail in the summer of 2004, and whilst it declined slowly, by the end of 2004 I was no longer able to do anything useful with it. I was virtually paralysed in both my arms and hands.

We were told by the wheelchair people, 'Obviously you can use the wheelchair, but try and walk as long as you can possibly walk. If you sit in the wheelchair you'll never get up again'. I took their advice. I did try, still in the latter half of 2004, to do some leg exercises. That became increasingly difficult as time went by and my legs got weaker, and increasingly there were occasions when I wasn't able to get up from the floor. 

What's your general attitude to progression? Do you try and keep it to the back of your mind? Are you looking out for symptoms? Are you thinking ahead about what other equipment you might need?

Well, we obviously have tried to react as matters progressed. Perhaps it was a mistake, because maybe I should have earlier gone for a hoist downstairs etc. We tended to just say, 'Well, let's see what happens with the equipment we've got.' 

To a large extent this approach was fine, except that some of the equipment took time to install. I had to be washed, for example, in bed for a good few weeks before they installed a bath lift. But otherwise we tended to sort of take things as they come.

That’s the trouble, isn’t it, it’s this lead time on equipment, that sometimes if you haven’t already got the plans in place that you, you get high and dry for a bit, before it.
 
Yes, I tend to feel, though - there is a point to that. There is that point that you’re then left high and dry - in the literal sense as far as the bath [laughs]. But again I feel that anticipating that you’re going to be worse makes you worse. I’ve always felt that. And that’s why I’ve tried to resist it.
 
 

He feels staff should offer newly diagnosed people positive suggestions for what they can do to...

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After diagnosis, doctors should be able to propose measures that the individual, the patient with the help of the medical profession and other bodies, can take to try to fight the illness, to give them something to do rather than sit at home and wait for death to come, or complete paralysis to occur. This could include suggestions for physiotherapy and appropriate massage, but not just for relaxation purposes. This kind of treatment should be taken in order to maintain muscle tone and, where possible, muscle strength. The only physiotherapy whatsoever suggested was by my local [Occupational Therapist in my borough]. There was no attempt to suggest any kind of physiotherapy in the hospital of neurology that I attended, or indeed any other kind of useful help in fighting my condition. I think physiotherapy is very important, as is better care and nursing assistance to allow people to have some modicum of movement in terms of getting out and about. A suitable diet encompassing the right kind of vitamins could also do much to maintain a patient's health. On another tack, potential hobbies or interests that a patient would get into should be explored. I have to repeat that only going to the shops once a week and watching television every day is not an option  as it weakens the desire to live and thereby can speed up progress of the illness. I also think that better financial support to spouses and partners of people affected by MND would go a long way towards making more informed choices in their attempts to fight the illness or at least live with it.

What about information?

Information about various organisations is a must. And not just the MND Association, but various people you can contact and various websites you can look at. I think that any information about the various options open to sufferers, their relatives and carers by way of help with, and research into, this illness should be readily available. Reading up about MND, from symptoms suffered through remedial treatment to research into possible cures, should go a long way towards assisting those affected to push on with their daily lives with some hope for the future. As an example of positive thinking when viewing patients by the medical profession, potential eventual cures offered by the existence of stem cell research should not be ignored, but at the very least doctors should be able to say, 'Yes, this is currently being investigated. At the moment there is no cure, but we are hopeful.' There may be a reason why they don't say this. Somebody might sue a doctor for giving false hope, but at the end of the day these people must be given some way of coping with as much information as possible about being able to help themselves and not just left to their own devices. Being told to go home and live as normal life as possible is just not an option. Doctors have to be able to give a raft of hopeful hints of what can be done to tackle MND on a daily basis, for instance vitamins to strengthen the body, physiotherapy to strengthen the muscles, contact with an occupational therapist, taking part in research, etc.

Better investigations into the possible causes such as Lyme Disease and other ailments could also be pursued. 

 
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Travelling abroad is too much trouble. Hotels with special facilities exist but cost a lot, and...

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What about holidays? Have you been on holiday?

No. That is because airlines in general and most hotels abroad, as well as I imagine most cities in other countries, are not disabled-friendly in any shape or form. It is a major obstacle, although some people do get round it by making lavish preparations to go to places. Obviously some of the big airlines might be able to help, but unfortunately the budget airlines are definitely not disabled-friendly. For a person in my condition the hassle and stress of travelling anywhere far is formidable. There are a few places abroad where one might go, such as a hotel in Malaga that's very disabled-friendly. It has all the necessary equipment. It's English run, actually. It's got hoists and medical beds etc, but getting there is a major problem. However much I'm keen and active, as matters stand at present it's always going to be a difficult situation. There are issues of going to the airport, hanging around at the airport, getting past check-in and through customs, being moved about, and moved from my wheelchair- because you have to be physically moved onto a special trolley to get onto the aircraft. The hassle of going anywhere abroad is difficult enough, but the cost is prohibitive, because of course medical equipment and facilities are extremely expensive, so that any hotel that caters for disabled people has prices that are about twice that of a normal price of a hotel room. We'd also have to buy upgraded seats with long - haul airlines or at least three seats with short - haul airlines, and take at least one of my carers with us. So the price is prohibitive.

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