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My Journey with MNDPeter CharmanMotor Neurone disease is a neurological disease, for which there is no cure and little treatment, characterised by progressive degeneration of motor neurones and can result in eventual loss of all body movement, including breathing and speech. Almost every case presents differently both in how the disease starts, what comes next and how quickly it progresses. Worst Fears RealisedMy journey started when I was 57 and noticed my speech beginning to slur just before Christmas 2002. I was also experiencing discomfort and cramps in my right leg, and was becoming greatly fatigued, often even by midday. The deterioration in my speech affected me considerably as my work mostly involved verbal communication. I visited my GP in January, to be offered an anti-inflammatory cream for my leg and a choice of referral to ENT or speech therapy. As my wife and I were becoming concerned about my worsening symptoms we opted to see an ENT consultant privately for a quick decision on whether this was the right route to follow. Within a few minutes we were told we really needed to see a Neurologist fairly sharply. Anxiety led us to a private consultation again in two weeks. After a very thorough examination he said an MRI scan was needed along with a specialist blood test to rule out a genetic disease (I later learned this was Kennedys, which is often confused with MND). I worried about my sons when this was said but was told it would only pass through the female line so they would be OK anyway. Several weeks later, scan and tests complete via NHS my wife and I drove to see the neurologist. Unbeknown to me my wife had done some research on Kennedys as she had seen this written on the blood test request and for the past few weeks had been confiding her fears to a close friend who was extremely supportive during this time, so in a way she was prepared for the worst. Unfortunately I was not and the words leading up to the phrase "have your heard of Motor Neurone Disease" are to this day a complete blur. I had heard of this disease and knew quite a bit about it and was totally struck dumb. All I wanted to do was break down and cry and get out of the room. As it was not such a shock to my wife she was able to take in some of the information being offered by the consultant such as contacts with MND Association visitor and referrals to speech therapy, but this was all very brief. There was no one to offer direct support or counselling after such a shock. My wife does not drive and I have no idea how I managed to drive us home, I think it was in almost total silence, but once there I broke down completely. This was the worst day of my life. I spent the next few days experiencing many emotions from anger to despair. It took three weeks to arrange a visit from the MND Association and publicity in the media regarding the right to die and a programme about someone with MND who wanted help to take his own life only fed my negativity. I remember saying to my wife I didn't want to become a vegetable. I got so low I read a book on how to take ones life and even purchased the resources to do this. I felt I could not ask any of my family to assist so would do it myself and hid these items in my garage. Determination Kicks InI accepted counselling offered by my employers, my main worries at the time being how my relationship with my wife and family would be affected. Although my sons are adults in their 20's they both still live at home. I need not have worried because they were all very supportive and maintained a positive attitude. I never returned to work and eventually retired on ill health grounds, hoping to at least enjoy the time I had left. We made an early decision to turn the garage into a downstairs bedroom/wet room as we knew I could get progressively weaker quickly. We contacted an Occupational Therapist for advice on the practical planning for this and it was completed well ahead of need, including ceiling track hoist. I played double bass in a jazz band and harmonica in a blues group and decided to carry on with these as long as possible but after six months I had to cease as my breathing was becoming affected. At this time I took advice on having a PEG fitted because of increased difficulty swallowing and again this was completed well ahead of need. My wife started to give me physio daily and still does and this is a great help in keeping everything as flexible as possible. My youngest son found a chat room on the internet where people with MND could meet up. This proved to be a major influence on my thinking and attitude towards MND. I no longer felt isolated and talked to people with a positive attitude who were determined to live life despite MND. After a while I even found myself supporting other people with MND over the internet and realised I was experiencing a complete turn around in attitude and became determined to live my life as best I could. Like many people with MND I tried all sorts of dietary/herbal supplements that possibly might slow progression but there is no way to say how I would have progressed without these. I also took Riluzole which is the only drug prescribed to treat MND. My Right to LifeBecause the deterioration in my breathing seemed disproportionate to that in the rest of my body I started thinking about invasive ventilation and my wife and family were very supportive of this. On enquiring about this from the neurologist we were told this was not possible and I would not be offered this. I can remember my wife saying words to the effect of "no right to live and no right to die either." I have never felt so rushed from a room as we were on that day and shortly after we ceased to visit the neurologist. I was so convinced my breathing was deteriorating quickly I had myself referred via the MND Association and my GP to a Respiratory Clinic experienced with MND sufferers. I started on Non Invasive Ventilation within a few weeks and felt the benefits immediately but when I enquired about Invasive Ventilation they painted a very black picture . I struggled to put my arguments across as by now my speech had virtually gone and I was having to use a Lightwriter. I felt this meeting very one sided but on reflection they were only trying to make me aware of the pitfalls. I intended to follow this path with a view to remaining in my own home because for me this was the whole point of the exercise. At this time I was putting together a Powerpoint presentation in collaboration with two internet friends in Denmark and Canada, on living with MND. This has been used by others with MND, their carers and professionals and I am very proud of it. Determined to pursue invasive ventilation, I asked my GP to refer me to a hospital that might be more receptive to my request for a trache, but after she contacted the Respiratory clinic they had a change of heart and said they were willing to support my request. However it was still five months later and my breathing was getting much worse before the first meeting to discuss my care package. It was decided I would need to have the procedure carried out at my local hospital but when I met the Respiratory consultant I found myself having to defend again how a trache would improve my quality of life and also answer a lot of questions on end of life issues. This is not easy to do and upsetting when you are trying to convince someone this is the right path for you. The consultant also said there were issues to sort out with the ICU as I would need to take up a non urgent bed there. I was under the impression from the Respiratory clinic that I had a "small window of opportunity" in which to have this procedure carried out but another appointment was made to "discuss progress" in eight weeks. I never made that appointment. Within four weeks I was in ICU having
suffered a respiratory failure. Because I was awaiting a planned trache
this was done almost straightaway. During my five weeks in ICU I lost
a lot of my remaining mobility, and my ability to breath without ventilation
was lost forever. I also developed a stomach problem. It is this which
has had the most influence on my daily life. I was discharged from hospital
with a rectal tube in situ as the only effective way to eliminate the
large amounts of gas (6/7 litres in 24 hours was not unusual) which would
build up in my bowels and which could affect my ventilation pressures
considerably.I cannot speak highly enough of the support and care I was
given during my stay in ICU. A Future SharedAt home 24 hour nursing care was provided by ICU nurses from Thornbury Nursing agency. This has meant a great adjustment for my family but I have nothing but praise for their care and attention and they respect our need for space and privacy. They are extremely supportive of us both especially on down days when either my stomach is particularly bad or I am feeling exceptionally frustrated and isolated. I still get out and about with their assistance as we had already obtained a wheelchair passenger vehicle via the motability scheme. This has made a huge difference to my quality of life and my wife has taken many pictures and stored them under the title "Have vent will travel". Since my return from hospital (now some 15 months ago) our health care trust indicated on several occasions that this care package needed to change for economical reasons and our nurses would be replaced with trained carers. My wife and I felt we were on an emotional rollercoaster each time different agencies and changeover details were discussed, which psychologically was very stressful. However we are over the moon now as a year to the day from my discharge, we were informed that we will be keeping our nurses permanently. A difficult step on my journey has been completing my living will but I was helped by the consultant from the local hospice and I feel reassured to know what will happen to me in the future. Today I am totally wheelchair bound and only have a little use in one arm/ hand but this still enables me to use the computer especially for communicating. Although I miss my independence I still feel part of the community and am able to contribute by, for example, composing questions for a quiz night and having one of my photos used as birthday card by a local card company. Part of my philosophy is to not shut myself away. I get out weather and health permitting and have friends visit. I'm still glad to be here. My journey, although difficult and lonely at times has been worthwhile because I feel valued and have remained with my family. I am living with MND not dying from it.
We often refer to ourselves as PALS which is an American term standing
for People with - The following web sites I have found usefulild- ALS/MND Alliance MND Association Build-uk net Patients Like Me PALS and CALS personal web sites ALS Pin Point ALS "Quackery" and "Questionable Medicine"
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