Monday, June 21st 2010

When technology fails

One of the (many) problems that comes with having MND is a reliance on technology. That reliance will steadily increase right alongside disease progression. During the early stages my adapted or specialised equipment was minimal and I was normally able to find workarounds to problems using shall we say ‘creative thinking’. This year however things are somewhat different. The lack of mobility, fading strength and encroaching paralysis makes it very difficult for me to do anything that requires a physical interaction. Thank goodness then that for practically all my waking hours I have a team of carers looking after me. Just as well really as my dependence begins the moment I sit in my office chair and rely on someone to switch my computer on.

These days the computer is never really ‘off’ as it takes far too long to boot up and shut down so I tend to keep it in sleep mode. To bring it back to life simply requires pressing any key on the keyboard. Well I say ‘simply’ but Ann, bless her has elevated this simple morning task to something unique unto herself! This is how it only normally goes… Whilst my breakfast is being prepared I normally like to quickly check my e-mail so I’ll say to Ann “can you press one of the keys please, any one will do”. I then sit there watching her with a bemused smile on my face as I visualise the cogs and gears whirling way inside her mind as she tries to work out the next letter in the first, middle or last name of the next member in her family whose name she is working through! One thing’s for sure, Ann may not be learning much about computers but I’m sure learning a lot about her family tree smile_regular.

Anyway for a couple of hours each day I have some time to myself and it is in this time I normally work on things of a more private nature – things that I may not want overheard as I dictate them into my computer. So in that time it’s just me… and the technology. Now I have to say that normally my Sony VAIO laptop running Vista is very well behaved and it is very rare indeed for it to completely lock up. But that is exactly what it did halfway through the afternoon as I was dictating into the microphone. The cursor had frozen, the desktop clock had stopped, my speech recognition software wasn’t responding, and I could get no response from my foot pedals. I stared at the screen in utter frustration. Both my arms were resting on my knees as it had become far more comfortable for prolonged periods than supporting them in the ergo rests. I needed to reset the computer and do that I would have to power it down and then switch it on again. The power button was a tantalising 12 inches away from my fingertips, but also unfortunately about 4 inches higher. A trivial distance to be sure, but for me it might just as well have been a mile. I tried using a technique that had served me well in the past i.e. bending down low and picking up the thumb between my teeth and then lifting the whole hand and arm and dropping it into the arm support. But I soon discovered that I could no longer do it because a) I was wearing my MND neck support which makes it very difficult to bend my head down too far, b) my hands were faced down on my legs and rotational movement in my arms is so poor now I have a near impossible task of flipping my hands over by myself, c) I don’t really have the strength anymore to lift a heavy arm in my mouth.

Even if I could have overcome all these obstacles I still may not have been able to reset the computer as you need to press and hold the power switch for a few seconds. I discovered very recently that I have so little strength in my fingers now that I can no longer operate my phone very reliably. Possum are supposed to be supplying me with a hands-free phone that I can operate via a foot switch but it’s well over a month overdue. So without even the phone I couldn’t call my next-door neighbour (who are often home) to ask if they could pop next door and press a button for me!

It’s at times like this when I truly feel helpless. I’m heavily dependent on my computer and the loss of even an hour, as was the case this afternoon, is extremely frustrating when time it is so very precious to me. I breathed a huge sigh of relief when Jan arrived.


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MND Awareness Week 19th – 27th June 2010

We’ve arrived at that time of year again when hopefully MND will have a slightly higher profile in the public eye than it normally does. In my first two years as a blogger I’ve tried in my own way to contribute to the week’s events by posting an article on MND in general terms rather than specific to me. This year I thought it would be a good idea if I could reach out to a different audience, perhaps one that wouldn’t normally visit this blog or indeed may not even be aware of it. So a few months ago I decided that I would write an article and approach my local newspaper to see if they would be interested in publishing it during the awareness week. But then as I began to draft out the article I started to think about what I really wanted to achieve. This was supposed to be a national awareness week so why limit myself to my hometown? Why indeed, especially as time is so precious to me and I may not have many more opportunities to do this. So a few weeks ago with the article finished I began to submit it to the various national newspapers that have an online presence such as The Times, The Daily Mail, The Telegraph, and The Guardian. Unfortunately most of them declined even to acknowledge receipt of the article. Most promising however was a response from someone at the Guardian who commented that it was ‘a very nicely written piece and really gives a feel of the horror of living with Motor Neurone Disease’. The last I heard was that she was going to pass it on to her colleagues on G2 and look at having it published on the website. I’ve not heard anything back yet but if it should appear in any of the newspapers, supplements or news websites over the coming week perhaps you would be kind enough to let me know. Fingers crossed! Anyway rather than see all that work go to waste I have included the article here in its entirety as this year’s awareness post.

* * *

In early November 2007 on a cold dark evening I walked out of my local hospital having just been given the worst possible news anyone could expect. I had been given a diagnosis of something called Motor Neurone Disease and had been told that my life was going to be significantly shorter and that there was no cure or treatment for what I had. I drove home alone that evening with tears running down my cheeks, more at the thought I was going to die soon, rather than any comprehension of what Motor Neurone Disease was, because at that time all I had really been told was that the nerves that send signals to the muscles were diseased and dying.

But that was all more than 2 1/2 years ago and in that time I have grown to understand through my own experiences what this disease is capable of and what it means to live with it. Yes, I say ‘live with’ as opposed to ‘dying from’ because although it is true that getting a diagnosis of MND is effectively a death sentence, I refuse to waste the precious time left to me. I realised at a very early stage that I could either sit around feeling sorry for myself and grieve for a future I would never see – and then realise when it was truly the end that I had squandered the life that was left to me – or I could try to make the most of each day and to try and find ways of at least engaging the mind even though I knew that my body would soon betray me. I chose the latter path.

Three months after I was diagnosed I set up a blog initially to keep family and close friends informed of my progress but as time went by the focus began to shift as I found I had a desire to share my experiences with a much wider audience and to raise awareness of this devastating disease. Looking back I realise now how the blog has become a kind of surrogate for work and how it helps keep my mind active. So this year for MND awareness week (19th to 27th of June) I’ve put together some words that try to paint a picture of what it truly means to have a neurological disease that cannot be slowed down, arrested or reversed.

MND is an insidious and terribly cruel disease. It gradually creeps up on you and slowly but systematically dismantles your life, all the while disengaging you from the physical world so that in the end you become nothing more than a passive observer rather than a physical contributor. It is a disease that effectively forces you to live your remaining life in reverse as you gradually lose the ability to perform the wide variety of physical tasks that you learn as you travel through life.

And that is how it was with me. At first the early symptoms seemed trivial, just a feeling of tiredness in my arms when performing physical tasks such as cleaning windows and painting fences, which I just put down to middle age. But as the months rolled by the symptoms grew to a point where I could no longer ignore them and after a few months of tests I knew what I faced. Since that time I’ve undergone a continual decline in my physical abilities. I lost the ability to drive a car and go to work for a living five months after being diagnosed. This loss signified the start of how my world, and my options, would gradually contract as the disease spread. Without the car, travel had to be planned in advance and was subject to the schedules of public transport. The loss of work brought with it feelings of social isolation, lack of purpose, concerns over financial independence, and self-esteem. I had worked all my life, so to find myself suddenly being removed from the workplace was hard to adjust to.

MND is strange in that everyone’s experience of it will be different. It can start in different parts of the body, spread in different directions and at different speeds. For me it was to be a top-down experience so as the disease spread down my shoulders and into my arms and hands I began to experience an increasing level of difficulty in performing daily tasks as the distance I was able to lift my arms decreased. Suddenly my arms started to feel ‘heavy’. Brushing my hair, cleaning my teeth, reaching to get something from a shelf, all these and many more were early problems I faced. The world around me had started to feel ‘out of reach’.

At first I tried to make use of various gadgets and adaptations that would try to maintain the illusion of independence for a little while longer, but the disease would continually move the goalposts and I got very little use out of any of them. As the months went by it started to feel like all my physical abilities were being stripped away like the layers of an onion as I gradually said goodbye to one skill after another. Skills I had learned as a child such as buttoning shirts, tying shoelaces, and even writing my own name became a distant memory as I gradually lost the dexterity in my fingers. Objects began to feel heavier as my strength faded. I lost the ability to prepare food for myself or lift a drink to my lips less than a year after I was diagnosed. I started to receive home care. My dependence on others had begun. A few months later I could no longer dress or even wash myself.

By early 2009 the disease had started to make its presence felt in my legs as month by month the distance I was able to walk from my house decreased until it got to the point where all I could do was walk around indoors. For anything else I had to rely on a wheelchair. For someone who used to enjoy walking and cycling so much it was a crushing blow because it felt like the world around me was contracting along with my personal freedom.

These days my legs can bear my weight for only a few minutes so for most of the day I’m confined to sitting in a chair. Falls can be painful and dangerous. I once fell backwards at the top of the stairs cutting my head open and lay on a blood soaked carpet for three hours unable to do nothing more than twitch like a stranded fish on the beach until somebody found me. I had never in all my life felt so utterly helpless. I spent that night in A&E.

It would be bad enough if MND just attacked the limbs but unfortunately it goes way beyond this. Given sufficient time it will eventually work its way through the entire voluntary muscular system although not everybody experiences every symptom. Throughout the 3+ years I’ve had the disease I’ve noticed a steady decline in my breathing ability to the point where I am now taking a breath after virtually speaking every sentence. At times it can feel like my chest is being held tight preventing me from taking a deep breath. Fortunately I can still breathe unaided but there may come a time when I will have to consider some form of non-invasive ventilation. Looked at this way, MND is a slow form of suffocation. My swallowing reflex has recently started to slow down so I am now having to take more care in what I eat and how it is prepared in case it becomes lodged in my throat and blocks my airways. My neck muscles have also grown very weak so that now I can barely support the weight of my own head. This causes problems when trying to walk as a heavy head flopping around is enough to upset my balance and threaten to topple me over.

Ultimately it is a disease that transforms you into someone with the needs of an adult sized baby, totally dependent on the kindness and care of others. In fact it is worse than being a baby because your mind remains as sharp as it ever was so you are fully aware of being gradually entombed in a body that no longer responds to your wishes. It is the ultimate prison with no chance of escape – ever.

Fortunately we live in an age where technology has made the life of a disabled person more bearable. These days I’d be lost without my computer and access to the Internet. I’m also extremely lucky that the disease has not affected my speech as it can do with some types of MND. I depend on it not only for social interaction and expressing my wishes and desires, but also for controlling my computer through speech recognition software.

In the time that I have had MND I’ve had to constantly figure out new ways of doing things, learn to live life at a slower pace and with severe limitations, try to anticipate and plan for my future needs, and give up some of my hobbies and interests that made life fulfilling, rich and rewarding. But despite everything that MND does to your body, despite everything that it takes away, it leaves your mind intact. Inside I’m still the same as I always was. It doesn’t destroy your capacity to love, to feel sorrow, to laugh or to appreciate beauty in all its many forms. In short it doesn’t destroy your humanity.

The really strange thing though is that despite everything that is happening to me I have yet to experience any form of depression. I’m not under any false illusions that a cure will come along right at the last moment and save me but I do believe that someday we’ll find one. I tend to think of MND as a huge puzzle with all the pieces facedown and scattered across the table. Through the dedication of men and women across the globe we are gradually revealing what some of those pieces are. It is still far too early to see how they all fit together and what the big picture is but I believe there will come a day when we will. I live with the hope that one day we’ll be able to consign MND to the history books.

* * *

MND Awareness Week (19th – 27th June)

To raise awareness of this chronic neurological condition the MND Association here in the UK have organised a national awareness week. This blog entry (which I dedicate to all my fellow sufferers) is my own small contribution to raising awareness. Regular visitors to the blog will of course already have a good idea of how the disease has impacted my own life so far. Those new to the site might like to dip into some of the resources I’ve posted links to.

Here are a few statistics and facts about the disease.

  • Motor Neurone Disease is a rapidly spreading neurodegenerative disease which attacks the nerves that control voluntary movement. As these nerves die, the muscles (through lack of electrical nerve stimulation) begin to weaken and atrophy which leads to paralysis. Life expectancy is normally dictated by the weakening of the breathing muscles.
  • Motor Neurone Disease affects around 5,000 in the UK (around 30,000 in USA). Every day in this country five people die from MND
  • The cause of the disease is unknown and average life expectancy is just 2-5 years from symptom onset. Around half will die within 14 months of diagnosis.
  • The number of people who develop MND in the UK each year is around 2 in every 100,000 and the number who have MND is around 7 in every 100,000
  • It affects both men and women although men are slightly more at risk (about 1.5x)
  • You can get it at any time in adult life – even as young as in your early twenties but average age is 60-65
  • Only about 10% of cases are familial (inherited) whilst the remaining 90% are sporadic (i.e. appears for no apparent reason).
  • There is no test for MND. Diagnosis is arrived at by elimination and the experience of the Neurologist
  • The number of people with MND is set to increase due to an aging population. This will place a tremendous burden on health care services.

The Motor Neurone Disease Association has a vision of a world free of MND.

To achieve this goal they fund research into understanding the causes of MND, how it can be diagnosed, and how to treat it effectively before it has a chance to destroy a person’s quality of life.

On the patient side the Association provides a whole range of services to ensure that people with MND receive the best standard of care and achieve the highest quality of life possible as well as providing support to the families and carers of people with MND. Those services include:

  • A nationwide support and advice service called MND Connect
  • A highly informative website rich in information and containing many useful documents which can be downloaded
  • A network of almost 100 branches and groups scattered across the country which provide local support to patients in that area and also perform various fundraising activities. My nearest one is the North Hants branch and it is these people who I keep in touch with
  • Approximately 350 Association Visitors. These are volunteers who are effectively the face of the MND Association as far as the patients are concerned. It is they who befriend and support people with MND and provide advice and guidance. It was through an AV that I had my first contact with the Association.
  • A network of Care Centres across the country which provide all the specialists (i.e. a multidisciplinary team) required to care for people with such a complex illness under one roof

On the health care professional, government and public sector side the Association is active by:

  • Campaigning nationally and locally for better care for people with MND
  • Raising awareness of the disease and working in partnership with MPs, Civil Servants, donors and fundraisers
  • Providing education and influencing local Health and Social Care Professionals via Regional Care Development Advisors

So there you have it, my contribution to help raise awareness. Tell me, do you feel more ‘aware’ now? I’m certainly very grateful that there is such a professional, dedicated and caring charity fighting on behalf of all the sufferers in this country. Twenty-five or so years ago the situation here was totally different and although a diagnosis of MND is still unfortunately a very bad one, care and symptom control has come a long way. Not only that but research has escalated to unprecedented levels giving hope that at least one day we will unlock the secrets of this enigmatic disease.

Just before I sign off here are a few things you may like to consider for which I’ve provided the links.

  • If you would like to make a donation to the MND Association then you can do so here.
  • If you would like to become a member of the MND Association you can do so here.
  • If you feel that you would like to become involved and would like to know more about voluntary work you can find out here.
  • If you would just like to know more about the Association then please click here.

Thank you for sparing the time to read this post.


Parts of this article have been taken or adapted from previous years MND Awareness blog entries which you can read here and here.

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Thursday, June 10th 2010

Mark at the ARK!

I’ve had an interesting day today, one that has given me a further opportunity at raising awareness of MND. The roots of all this go way back to last year when Rachel, my Social Care Manager and part of my local hospice team, approached me to see if I would be willing to participate in an MND study day that they intended to run for healthcare professionals. I readily agreed as I have always been keen to help raise awareness of this disease, although normally of course my efforts are channelled through this blog which in itself consumes a lot of my time. For one reason or another it never took place last year and I was beginning to wonder if it ever would, but a few months ago I got the word that it was going to take place in June. The original idea they had for my part was to record me talking about MND but then at a late stage in the organisation Rachel decided that it would be nice if I could actually come along and talk in person. So that is what I did!

The hospice had arranged a modified community transport minibus to come and pick me up at 9 AM which meant poor Ann had to get up extra early to be around my house by 7:15 AM so that I could be washed, dressed and fed before it arrived. Debbie arrived an hour later to help Ann get me downstairs and into the wheelchair, and by the time we were ready to leave Alli had joined my little travel party.

The MND study day was held at the ARK Conference Centre, adjacent to Basingstoke and North Hampshire hospital. The day’s programme ran from 9:20 AM through to 4:30 PM with the day’s events kicking off with a talk by the MNDA Regional Care Development Advisor which gave insights into MND and the role of the MND Association. As part of her talk there was a video focusing on the lives of four different people who have MND. Sadly the end credits revealed that three of these people had lost the fight. This was followed by a talk on challenging symptoms by a consultant in palliative medicine for Sue Ryder Care. After a mid-morning coffee break one of the doctors and consultants in palliative medicine from our own hospice gave a talk on cognitive challenges in MND which suggested that it was far more common than first thought. Before wrapping up for lunch we split up into three large groups for a series of patient and carer perspective workshops. And so for the next hour I was the guest speaker being interviewed and talking about my experiences of living with MND. It was a bit of a struggle talking for so long and I found myself frequently pausing to take a breath before continuing. But apart from that I found the whole experience an enjoyable and rewarding one.

Straight after lunch and for the next hour there were small group discussions and a talk on dealing with difficult decisions and advanced care planning. The final talk of the day, which followed a coffee break, was presented by a clinical psychologist who talked at length about compassion fatigue and the risks for the healthcare professionals.

It had been an interesting day and it was encouraging to see that it had been fully subscribed with over 80 healthcare professionals ranging from GPs and occupational therapists to physiotherapists and speech and language therapists. It felt good to be a part of something that would help educate people dealing with MND. Afterwards Rachel informed me that there had been some very positive feedback on my workshop, so that was nice to hear. For me personally it was also a wonderful opportunity to actually get out of the house again (for only the third time this year).

I would like to say a big thank you to Ann, Debbie and Alli for taking such good care of me today.

Before I sign off just have to mention a short four minute video that was shown at the close of the day’s events. There was no introduction or explanation as to why they were showing it which was strange because it had nothing to do with MND. In fact it was the complete opposite of what it means to have MND… and that of course for me was the message. This lovely feel-good, inspirational and heart-warming video clip had me both smiling throughout and feeling envious that I couldn’t participate. I’m not going to spoil it and say too much but if you want to see something that can bring a smile to your face through the simple actions of this one-man and how he’s brought people of different countries and cultures together then take a look at his video which you can view below. Enjoy!


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