East Dorset and New Forest Branch
Personal accounts of living with MND
Living with MND; An article from Thumbprint
Gil’s
Story
This is just a short excerpt from Gil’s memoir, chronicling how he and wife Betty adjusted to new expectations in the light of his diagnosis. After a career in the Air Force, Gil had a successful career as an engineering lecturer in traffic control systems. Once their three sons were grown Betty often used to join Gil on his lecturing assignments abroad. In around 1990, Gil started to notice a slight limp in his left leg.
“At this time I was still leading a pretty active life, partly with work but also in my spare time. We always had enjoyed walking, and used to go for long walks of 12 – 15 miles. I was keen on cycling as well and when I could I always cycled to work. Bit of a fair weather cyclist though, I couldn’t see any point in arriving at work wet through, unless, of course, Betty wanted the car! We also had a large garden to look after, which took a lot of time and physical effort, can’t think of how many times we reshaped the garden but it was fun and we enjoyed the results. From this you can imagine that Betty and I had a pretty good life style and were able to do most things we wanted. Work got in the way of enabling us to do all of the things we wanted. However, things were about to change, things that were going to have quite a dramatic effect on the rest of our lives. I first noticed that I was having a bit of a problem with my left foot. It was as though I had started to wear a flipper just on that foot, in that as I walked my left foot started to flap down as I moved it forward. I never paid much attention to it until one day one of my colleagues said to me ‘Was that you clumping along the corridor.’ I replied ‘What me, you know I always creep everywhere.’ There was no carpet along the corridors. This now worried me because I thought that if I was a bit late the boss would hear me coming and so I couldn’t sneak in quietly! I thought it was something that would go away and so never mentioned it to Betty at first.
I went to the doctor and was referred for tests, but still travelling for work. One of the best-ever trips was Hong Kong where Betty and I stayed for two months. One of the highlights was going to the Peak and see the lights of Hong Kong coming on, it would be difficult to describe it any other way than ‘magic’.
The first diagnosis was that I had something called Transverse Myelitis. At this point we were relieved as we had a name for the problem, and it wasn’t Multiple Sclerosis (MS) or MND - both had been ruled out by tests at this point.
Changing Mobility
I got to a point where I was having a bit of a problem driving a car with a manual gearbox. We changed to a lovely automatic Toyota, probably the best car that we have ever had. Betty was a bit nervous about driving an automatic but she soon got used to it and would never go back to a manual car now. Another good thing was that I told my boss I could only drive automatic cars and, as a result of that, when I had a hire car for travelling for work I always got top of the range and big cars. Were my colleagues jealous!
About this time I had to give up cycling as my balance was beginning to go a bit and if I stopped and put my leg down on the ground I sometimes felt unbalanced. That was a serious blow as I really enjoyed cycling and had not long ago treated myself to a new bike. Because of the problems with balance and walking, I had to see my GP again and we decided that it might be worth having some physiotherapy. My first sessions were carried out before I had to use a walking stick regularly. On my first session I was watched whilst I went through various walking activities. The comment I got was, ‘Oh! I think we will have to teach you to walk properly.’ It was said in good humour. I always felt that the physiotherapy did me a lot of good and built up my confidence. It was during these sessions that I got my walking stick. I thought I might as well have an NHS one. They had a limited supply so the one they initially gave me was too long, and I’m 6 feet tall. I thought it was a shepherd’s crook. They cut it down to size for me. My colleagues at work were surprised the first time I went into the office with a stick. ‘What’s this,’ they said ‘trying to get light duties!’ I laughed and replied ‘I brought it in so that I can nudge you lot if you fall asleep at your desk.
I still had more travelling to do with my work. On one trip to Liverpool, I went by train. The hotel was too close to the station to warrant a taxi but with my poor balance, walking problem and difficulty getting up steps without something to hang on to; it took quite a while to get there. Mind you, for anybody who was watching, it was probably quite comical as each time I got to a kerb or step I would put my bag down, hold onto something, step down or up, pick up my bag and carry on walking.
Leisure
By 1993 I’d given up cycling and walking, tried golf and had to give that up, and had to use a wheelchair on occasions. I couldn’t do much in the garden either. Things were going a bit downhill. I needed to find something to do before I became too depressed and started to find excuses not to do anything outdoors. We found the answer at Dorchester Indoor Bowls Club. We’d started to play indoor bowls before moving to Dorset and still had all the equipment. We tried it out and enjoyed it so we decided to join the club. At the beginning I was managing with a special stick to gain my balance but I was slow getting up and down the rinks. To overcome this I started using a specially made wheelchair (buggy). I had found something, which gave me a new lease of life just when I needed it and also we made a lot of new friends. I’m not a great believer but maybe somebody was watching over us and helped when we were beginning to need it. We still play bowls and still enjoy it as much. We play in leagues, friendly matches and competitions, though we may cut out the competitions next year as they tend to be played at inconvenient times, like Sunday morning! That’s a day for a lie in! I once got to play in the qualifiers for the Nationals for wheelchair bowlers. I lost by 1 point.
The Right Diagnosis
In April 1999, after a week of tests I was told I had a condition known as Primary Lateral Sclerosis (PLS). That meant nothing to me but I now had a name for my condition. I was told it was a rare, with slow progression, that there was no effective treatment but that some drugs might alleviate some symptoms. I wasn’t told that PLS was a rare form of MND.
As my speech deteriorated, eventually I got a Lightwriter from the NHS, via my speech therapist. It was a device that I could type into and people could read as I typed, if they had the patience! It would also play back what I had typed, in an American voice. I could also choose the voice. It had the facility to store pre-typed sentences, which was handy as all I needed to do was select the memory location and then play it back. Very few people knew of these and, needless to say, were much impressed. It certainly helped to make life easier as talking was becoming quite an effort and would make me tired. Regardless of that I would talk as much as I could, and still do. The problem is now quite frustrating as sometimes Betty, and other people, can understand me on some days and have no idea what I’m saying on others. I think to myself ‘what’s the matter with these people, I can hear what I’m saying so why can’t they?’
HRH The Duchess of Gloucester became fascinated by Gil’s Lightwriter
whilst on a visit to Lewis Manning House Respite Day – Care Centre
The photo, and note, refer to when I was attending the Day Care Centre mentioned below and in fact I was doing my first watercolour painting of Polperro harbour at the time.
Respite
In 2002, I began to attend a Cancer Day Care Centre at Sandbanks in Poole - they also accept up to 5 people living with MND. I wasn’t too keen in the first place – I had a picture of a place full of people who would be not too happy with their circumstances. As I was coping pretty well, I didn’t want to take any chances of being set back by going. Our Visitor said another chap with MND was attending and was very happy with it and wished he’d gone sooner.
So we attended our appointment and met the head nurse. I must admit I was impressed with the whole thing and on that basis thought it worth giving it a try. The day came and off I went. I was so pleased that I had gone that day because not only did I enjoy it, but also I now go two days a week, and I indulge in hobbies of painting and building a model boat, which I can leave there. I should say that this model boat started many years back but was often left for long periods of time because it was a “pain” to put away.
Besides that I can have a nice Jacuzzi bath, have my nails cut, have a haircut and all before a nice three-course lunch. After that I can do whatever I fancy. In the time I’ve been going there I have finished a nice watercolour painting of Polperro Harbour and have started another of Gold Hill, in Shaftesbury. I have also done more work on my boat than I have in the last few years at home. I enjoy those two days out a week and shall keep going for as long as I can. It also gives Betty a real break for those days to do anything she feels like. My experience of respite care is that it was well worth using it. You are in the safe hands of people who are trained to provide the care whether in a Day Care Centre, a Hospital or a Respite Care Home. It provides the carer with some time to recuperate from the physical and mental stress of looking after somebody with a long-term serious illness. It also gives people like me a change of environment, the chance to meet other people and to be able to escape from the thought of ‘being a burden’ on somebody that you love and care about.
Gil Rice
(Gil’s full account, which is up to June 2002, is available from the MND library at National Office. If you would like to request a copy please contact the Care Information service on 01604 611870)
From June 2002 up to the present date, 14th December 2006, life has carried on much as before. Attending Lewis Manning, painting a lot of pictures, going on holidays abroad and to Scotland, going on outings with our MNDA branch. This has included going up in a light aircraft for a flight around the local area from Compton Abbas airfield, that was some experience and not in any way like flying to destinations abroad on package holidays, no "Trolley Dolly" ! I intend to keep on doing whatever Betty and I can manage that is 'normal' for as long as is possible. Life is to precious to waste any time at all.
Gil Rice
Living life to the full in the face of death
John Trewavas, a member of the East Dorset and New Forest Branch of the MNDA had an article published in the Bournemouth Daily Echo. The article has been published below with the kind permission of the Bournemouth Daily Echo.
Living life to the full in the face of death
by Joanna Codd
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The diagnosis and its delivery were brutal: "You've got an incurable disease, it's motor neurone disease. I suggest you just go back to the office and get your head down."
Only a couple of years after losing his 43-year-old wife to a hospital-acquired infection, those words meant John Trewavas was having to face his own demise from a progressive, disabling and incurable illness.
He had first started showing weakness in his right arm in 1993, when he was 51. At first, doctors thought he might have carpal tunnel syndrome, tenosynovitis, or even a reaction to an anti-malaria drug. The diagnosis of MND was eventually confirmed in 1996 after further tests.
MND is the name given to a group of related diseases affecting the nerve cells through which the brain sends instructions to the muscles. Over time, muscles weaken, leading to problems with movement, speech, swallowing and breathing. Its most famous sufferer is Professor Stephen Hawking.
John believes his illness was linked to the traumatic circumstances surrounding the death of his wife, a nurse who had gone into hospital for colon cancer surgery four years earlier.
"The operation was relatively successful, but she got an infection which we assume was MRSA. I had to initiate the decision to turn off her life support," he recalled.
At the time he was working as the finance director of a large hospital, handling an £80 million annual budget. He had a teenage son and daughter to worry about and was given no time to grieve.
"I was told I should take two weeks to get over it, then they expected me to get back into harness. I held it together, but I think something had to give," he reflected. "I don't blame anybody. It happens. I don't ask the question `why?' I have to get on with it and make the best of it."
John carried on working at the hospital until 1996, when he took early retirement and enrolled on a post-graduate teaching diploma. He became a senior university lecturer, took on a part-time finance director's post, developed a BSc programme in healthcare infomatics and became a trustee of a respite care charity and a school governor.
After retiring for the second time, he decided to tackle an MA at Birkbeck College in London. His dissertation was on the benefits of lifelong learning to health.
John, who lives in Highcliffe, believes his own illness has been slowed by keeping busy and concentrating on his abilities, not his disabilities.
"I think that may have delayed its progress substantially. If I'd sat around and brooded, I wouldn't be here," he said.
The average life expectancy for someone diagnosed with MND is between one and five years after the onset of symptoms, although Professor Hawking has so far survived more than 40 years since being diagnosed at the age of 21.
After more than a decade with the disease, John's right arm is virtually useless and his left arm and hand are deteriorating, but he keeps as active as possible.
He has successfully tackled part of the Inca Trail in Peru, has volunteered to be a tutor on the NHS expert patient programme, been asked to stand for election as a national trustee for the Motor Neurone Disease Association and is thinking of doing a doctorate. He is also treasurer of the New Forest Ramblers group and the local Conservative Association, and is involved with the University of the Third Age.
"At times I do feel very vulnerable," he admitted. "I try to avoid stressful situations and try to allow a lot more time to do things. I gave up driving about four months ago and that has had a devastating effect on my morale and independence. One thing I can do is walk; I'm a very active member of the Ramblers and very often will walk 10 miles quite happily."
He tries to end each day in an uplifting way. "It might be a television programme, some nice music, or a phone conversation with friends. I find some way so that when I go to bed, I'm happy," he said.
"I try to live my life in five year periods - my teaching career lasted about five years, and as that came to an end I focused on the Masters. I'm now trying to focus for the next five years. I need a goal to aim for. If I can't do physical things, I can use my mind.
Ø For more information, contact the Motor Neurone Disease Association, PO Box 246, Northampton NN1 2PR, telephone 01604 250505, helpline 08457 626262, or e-mail enquiries@ mndassocation.org.
Every Day is special
Danny Broomfield, a member of the East Dorset and New Forest Branch of the MNDA had an article published in the Bournemouth Daily Echo. The article has been published below with the kind permission of the Bournemouth Daily Echo.
Every day is special
by Joanna Codd
PRETTY IN PINK: Danny Broomfield with granddaughter Holly in a Christmas Day photograph
IT is hard facing up to the future when you have been diagnosed with a terminal disease, but Danny Broomfield is doing just that, with the help of his friends and family.
Last September, Danny, of Barton on Sea, began to notice some muscle weakness in his left arm and hand. He went to his GP, who referred him to a rheumatologist straight away.
A scan in December showed arthritis in Danny's neck, along with some compression in his spine. But further tests revealed that his muscles were showing signs of wasting. He was sent to see a neurologist at Poole Hospital, where more tests were carried out.
"I went back to see the rheuma-tologist who said: `I think you've got motor neurone disease, but don't take my word for it we'll have to seek final diagnosis from a neurologist'," said Danny.
"It smacked me straight between the eyes. When I first had these symptoms, I looked on the internet. I used to drag my left foot slightly, and found that was one of the symptoms of motor neurone disease. It scared me a bit, but at the same time, only two people in 100,000 have the disease. I thought the odds were with me."
But the diagnosis was confirmed by a neurologist at the Royal Bournemouth Hospital. Danny said: "We walked out of outpatients. It was a beautiful evening, but we'd just had this devastating news. We both had a couple of very stiff brandies when we arrived home. The next thing that comes into your mind is how are you going to tell the family.
"The next couple of days were like living in a vacuum, then you start to think: this is someone else who's got it. I don't think anyone realises what it's like unless they have been or are in this situation."
Danny's wife Melanie said: "All the professionals we've seen have said it's not just Danny's illness, it's our illness. We're both looking over the edge of a cliff into a big black hole."
The couple believe Danny's neck pain masked the motor neurone disease. He last worked in January and is now officially retired from his job in the Daily Echo's pre-press department on health grounds.
Since the beginning of the year, he has lost around two stones in weight and the use of his left arm.
"Melanie has to do all sorts of things for me now, like helping me get dressed and showered," he said.
But father-of-two Danny, who was singer and guitarist in local band Mint Condition, is not about to give in. He goes to a gym at his local sports centre and has a tailor-made programme of physiotherapy to try and slow the progress of the disease.
"Fifty per cent of sufferers don't live longer than 14 months from diagnosis. I don't feel bad about it: I don't feel annoyed that I'm going to die. What does annoy me is that I won't see my four grandchildren grow up," he said.
Danny and Melanie have found support at the East Dorset and New Forest branch of the Motor Neurone Disease Association. "They're lovely people and have a good sense of humour," he said.
Melanie, who has gone part-time at work to spend more time with her husband, said: "We've been married for 36 years. The sad thing is not having to do things for Danny, but the reason I have to do it."
Danny added: "We're all going to die. It's just that I'm going to go sooner than I would like. A friend of mine died a couple of years ago while he was fishing.
"At least we've got time to arrange for the future and talk things over."
