R.I.P. Mark Glover: 1960 – 2011

Mark Glover

On Tuesday 30th August 2011, my dear brother Mark passed away after four years of battling MND.

I’m Mark’s youngest brother, Jason, and it was only at the end of July that he sent me an email asking me to look after his blog ‘when his time came’, making sure it was never deleted, approving any guest comments and writing the final post to tell people what had happened. He wanted me to be the custodian of this site he’d devoted so much of his time to over more than three years and which many people had expressed their gratitude to for being such a great MND resource.  I don’t know if Mark had a foreshadowing at the time that he would pass away just a few weeks later but I accepted his request, even though it saddened me greatly to think there would be a time he was no longer here. I thought at least that it wouldn’t be until next year or beyond but I was wrong.

I’m sure it will come as a surprise to many of you that follow this blog that Mark has now passed away, especially as it was just two days after his final blog post on August 28th when he suggested readers come back in a week to see more pictures of the period before, including his 51st birthday on August 24th. It came as a shocking surprise to all of us as well – his family, friends and carers – but a day after Mark wrote his final blog post, he contracted a chest infection which, in his weakened condition, proved fatal just a day later.

Mark died peacefully in his sleep at home, one final ounce of mercy after four years of battling the cruelty of MND.

Apart from Mark himself, I may have been the first person to notice the early effects of his MND early in 2007, although I never could have guessed then what the cause was. I lived with Mark for 13 years in the house where he’d pass away, a house familiar now I’m sure to those of you who follow this blog. Even after I moved out at the end of 2004, I only moved up the hill a couple of minutes drive away. Mark and I would continue to see each other very regularly, inviting each other round our homes for dinner and a DVD every few weeks.

It was during one of those evenings in 2007 when I first noticed something wasn’t quite right. Mark was sitting opposite me having dinner and I could see his hand shaking. I pretended I didn’t see it but I’m sure he knew I had. Neither of us said anything and I thought little of it at the time, thinking maybe it was just a muscle spasm or, at worse, arthritis. His hand got weaker over the following months and when, Chery, my then fiancee (now wife) and I took Mark out for dinner on his 47th birthday at the end of August, he told us he was worried about the muscle problem, which was affecting his arms as well.

I was naturally worried for my brother but I still didn’t think it would turn out to be anything bad. In our family we have a history of cancer on our mother’s side and heart disease on our father’s. It’s those things I always fear so I would never think that any other disease could strike us. Even after Mark was diagnosed, he still said it may not be MND that eventually killed him. He had always been the healthiest one in our family, rarely even getting a cold and hardly ever having a day off sick in all his decades of work.

Further tests followed and still Mark didn’t know by the end of September 2007 what was wrong with him. The specialist at the local hospital booked him in for three further tests and Mark remained very worried. And I was starting to worry more as well. At the end of October, I drove him to Southampton hospital for the last of his tests and by now his arms were very weak, although it would still be five months before he’d have to give up driving and work.

Mark was relieved to get all his tests out of the way and he had a meal at my apartment with Chery and I that evening. But then everything changed on 7th November, a cold dark day for more than one reason. I was home alone that day and he came round to see me that evening to tell me he’d just been to the hospital to get the results of his tests and he’d been diagnosed with motor neurone disease, Progressive Muscular Atrophy to be exact. It still wasn’t completely conclusive at this stage but, just able to fight back his tears, he explained to me how the disease worked, how it would spread from his arms to his legs and eventually his lungs. And he told me there was no cure and he’d eventually end up in a wheelchair and die before his time.

Of course, I was devastated! I had never heard of MND before but after Mark left I looked it up online and was shocked to find out what it meant. I could never believe that something like this would happen to someone so close to me. Mark was my big brother. He was always there for me when I needed him and I knew I had to do the same for him.

The following day, I found it so difficult to concentrate at work and had to tell my boss by email because I was too upset to tell him face-to-face. Mark called me that evening and seemed to be coping better than I was, such was his strength. We said we’d talk more and even then he was planning for what was to come by telling me I should have a key to his house in case I needed it.

Soon after, a whole support network sprung up around Mark and he was constantly reminded that right now MND had only affected his arms and it may be a long time before it progressed any further. He was told that even in Basingstoke there were were people with MND who’d lived with the disease for 10, 15 and even 20 years and that gave him a lot of strength. But just a couple of weeks later he started to notice his other arm get weaker as well and soon after I started to do his weekly food shopping for him.

During the years that followed, even with MND dismantling his life bit by bit, I was inspired by how positive Mark remained. At first, it was partly because he believed it would take many years for the disease to run its course, but even later when he knew the end may be in sight, he never stopped being the person I always knew. MND can take away many things but with strength of mind it can’t take away the person you are.

And when the end did arrive, despite me knowing the day would one day come, I still wasn’t ready for it. Just a week before it had been his birthday and I’d seen him last just two days before he passed away. I got a call at work from Debbie, Mark’s main carer, Tuesday morning to say Mark wasn’t good and as the time progressed he became unresponsive. I made arrangements to come home but just as I was leaving I got another call to say he had passed away.

Mark’s funeral took place on Monday 12th September and was well attended by family and friends. He was cremated according to his wishes and his casket with his ashes was buried the following day beside our mothers in a nearby church.

My brother Mark was the bravest person I’ve ever met. From the day he told us he’d been diagnosed with MND, he lived each day with so much courage and determination and with a smile and a joke never far away. I know from the many comments left on his blog how much his story inspired others, including those battling MND themselves and those caring for them. And I want to pay tribute to all the carers who looked after Mark over the years, many of whome are here with us today, and who showed both compassion and friendship to him and gave him another reason to cherish each day.

I will always be proud knowing that I was Mark’s little brother, or junior as he sometimes called me.

I remember movie nights when we’d take it in turns to pick what to watch and then sit in front of the TV, each with a cat on our lap. I remember countless trips to the cinema and waking up every Sunday to the smell of Mark cooking our  dinner. And I remember holidays together, including Florida, where I dragged him onto every rollercoaster I could find even though he always closed his eyes.

These memories and many more will always be with me. And I will always miss my brother.

Thank you for reading this blog.

Here is a video featuring Mark’s life from a child, right up to his final picture, accompanied by music played at his funeral, including a track from Queen that he specifically asked for.

Sunday, August 28th 2011

A Tough Month

I celebrated my 51st birthday last Wednesday not exactly as I imagined it would be but instead wrapped up in bed unable to move and fearful of the future. My breathing continues to worsen, so much so now in fact I have been effectively confined to bed 24 hours a day – every day’! Any attempts to leave it and reposition myself leave me gasping for air. It has been a particularly frustrating month for me as I have seen valuable time squandered whilst I lie here helpless. Even the computer which I have long depended on to keep my mind fully engaged is now becoming difficult to talk to as the volume in my voice continues to diminish. Quite often now I have to endlessly repeat a sentence or phrase before the software is able to understand. No wonder it takes me so many hours to create the simplest documents. My OT has been made aware of the situation so I’m hoping that she can set up another assessment on my needs with AbilityNet. I really hope that they can come up with something soon otherwise I shall be facing the real possibility of being physically unable to communicate with my digital world and those around me. But it isn’t just my computer that is suffering; I am also finding it difficult for people to hear my voice on the telephone as well. In addition, Debbie, one of my carers, has obtained a baby monitor so they can listen out to changes in my voice wherever they are in the house.

My energy levels have fallen through the floor this month. I wake up each morning with very little desire to do anything other than go back to sleep. By the time I’ve got myself sorted out the morning has gone and I have very little to show for it. And so for the rest of the day I drop in and out of sleep seemingly finding escape from the problems of the world around me.

I’ve lost my appetite almost completely now. Very little food gives me any real pleasure and the tastes and textures do nothing to stimulate eating. And yet bizarrely around midnight my stomach is growling in complaint at a lack of normal food even though I know full well that by morning I’ll be struggling with a mouthful of cereal.

I’ll sign off now with a photograph taken over the week leading up to my birthday when my whole team of carers descended on me for a surprise birthday gathering. There were supposed to be more photographs in this post but there appears to be some kind of technical glitch preventing me adding them to my post. I’ve already spent an utterly exhausting afternoon trying to clear the problem without any progress. I suggest you come back in about a week to see if I’ve made any progress.

With my niece, brother and nephew at my bedside where I now spend all my days. 17th of August 2011


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Sunday, July 31st 2011

Feeling exhausted

Things have not been going too well for me these past few weeks and I’ve spent most of that time confined to bed thanks to my weakening breathing muscles which are really starting to dictate what I can and cannot do. Consequently they’ve been making life a little bit miserable lately. I’ve only got to be a few degrees out of my ‘sweet spot’ and I am gasping for air and unable to talk. To make matters worse I developed a bit of a rattle on my chest last week which culminated in a late-night visit from the doctor who prescribed some antibiotics which I am still working my way through.

The hot weather we’ve been enjoying lately has brought with it further difficulties for me making life distinctly unpleasant. The high temperatures have made breathing even more difficult and tiring and I’ve been going to sleep with an oscillating fan by my bedside not only to help me to keep cool but also in some way hoping it will assist with my breathing. My appetite has been fluctuating wildly. Some days I can do no more than sip on a few ensure high calorie drinks whilst on others I can be coaxed into eating some solid food. But walking hand-in-hand with my poor appetite are the feelings of nausea which make me feel even worse. Fortunately I have some tablets to help combat it.

To help alleviate the positional problems I’ve been facing when taking a shower, Caroline, one of my OT’s has made arrangements for a different model to be delivered, one which allows the chair to be reclined a lot further. It’s not perfect but at least I can breathe a little easier whilst being washed and that at least removes some of the anxiety. It was getting to the stage where I was becoming nervous about leaving the bed to take a shower!

Apart from this everything else is running okay although boredom is starting to set in due to lack of stimulation. The new night care is working out well and my lovely new mattress really makes laying in one position for a long period of time bearable. Just as well really as my world at the moment seems confined to 6ft x 3ft.


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The other side of motor neurone disease

Much is written about the physical effects that MND inflicts on the body. I myself have spent the last three years documenting those changes here on the blog. However, there is another kind of onslaught going on, one that is even more insidious, one that doesn’t get written about so much. I am of course referring to the effect the disease has on the mind and of trying to come to terms with having something that is life-limiting and highly destructive, and where diminishing abilities give cause to wonder what each day will bring and what you’ll wake up to find you’ve lost. So here then is my journey from an emotional viewpoint.

I read somewhere once that there are a number of stages that someone faced with an incurable disease will pass through. First there is the initial shock of receiving such a devastating diagnosis. This is followed by denial, which in my case I suppose manifested itself in that period of time I spent early on trying to scoop up every last piece of information I could on the disease searching for a grain of hope. Anger is the next stage and for me this manifested itself in the frustration of how little is done to find a cure or a way of managing the disease. Grieving comes next as you mourn for the life that will be taken from you and saying goodbye to family. Finally comes acceptance as you eventually come to realise that no matter what you do you cannot escape your fate.

Well, that’s the ‘simplified’ version but perhaps another way of looking at it is the sheer range of emotions to be experienced as the disease progresses. Like a snowball things started off small as the difficulties first encountered were overcome to varying degrees and I was able to continue on with life with minimal disruption. Because I still had this illusion of normality all I really felt was frustration that things took longer. The first significant blow was when I was forced to give up driving, something I’ve been doing since I was a teenager. The loss of my independent mobility felt really strange in this car culture society of ours. Practically everyone I knew drove a car and now I felt excluded. It was the first real sign that my life was starting to unravel.

Having to give up work shortly afterwards had an impact on my self-esteem. Here was something that I had been doing unbroken since I was 14 (working in a shop after school) and now it had abruptly come to an end. All my adult life I had paid my way, never once asking for state handouts, and happy that I could contribute to society. Now for the first time I was faced with living without a steady income. But it wasn’t just the financial ramifications, there was also the social aspect of working with a team of like-minded people and the satisfaction of working in a good company doing rewarding work. Suddenly I found myself out of the workplace and feeling socially isolated for long periods of time.

The next adjustment I had to get my head around was accepting the fact that I needed some help. For someone living an independent life this was something I had not been looking forward to and I was quite apprehensive about it. But stubbornness and determination not to give in eventually lost out to an unrelenting disease. Initially it was just for mealtimes but even this was a big change and having strangers come into my house several times a day felt uncomfortable and invasive, even though they were obviously there to care for me. Suddenly a simple task like preparing a meal for myself had slipped away from me. It felt like my body was betraying me and that I had somehow let myself down. The disease had reached the stage where it was starting to encroach on basic living tasks.

Help with dressing was the next challenge I faced. Once again my stubbornness and determination prolonged the agony of trying to dress myself for far longer than it should have. I can remember even now struggling frantically in the mornings leaning against the banister rail at the top of the stairs trying to get my clothes on before my carer arrived, even though that was one of the tasks she was supposed to be helping me with! I can remember the days when I was frantic just because I couldn’t do up my trouser belt and I was thinking any minute now and she’s going to be ringing the doorbell! It all seems ludicrous now of course but back then I was still adjusting to having all these different people around me.

I suppose looking back one of the biggest hurdles to overcome was giving up my own personal care and the stress that put me under. With each passing week I would spend longer and longer in the bathroom trying my hardest to manage with arms that had no strength, frantically trying to hold on to my dignity. But eventually, and in desperation, I had no option but to relinquish these activities. Of course I’d known all along that sooner or later I’d have to but it didn’t make it any easier to accept. I don’t give it a second thought now but back then it felt distinctly uncomfortable being washed like a baby by people I was only just getting to know.

As the paralysis creeps forward so too does the fear. The sinister way in which the disease crept forward robbing me of strength and mobility is truly frightening. I think the first time I experienced a sense of fear was when I went out walking one day early in 2009. Halfway through my hour long walk and at the farthest point from my home, my legs, which up to this point had been sturdy and reliable, suddenly started to grow weak. It felt like all the energy was draining from them. Fearful that I wouldn’t be able to support my own weight for much longer I looked around anxiously for somewhere to sit down. But there was nowhere. I knew I couldn’t just sit on the ground for fear of being trapped there so I had no choice but to carry on. The dilemma I faced was do I walk fast and risk burning up my energy even quicker or do I walk slow and use up too much time? By the time I did get home I was shaking. It was the last time I ever walked so far from my house. In the following weeks I made ever more feeble attempts at going out for a walk by myself as my confidence in my abilities began to crumble. My world was beginning to contract.

As my legs grew ever weaker I started to feel a hostage in my own home, and tackling the flight of stairs each day became something that I would only do when absolutely necessary which meant that most of the day I would spend sitting at the dining table working on the computer. Walking up or down stairs became a nerve wracking experience as I wobbled side to side on jelly-like legs whilst immovable arms dangled hopelessly by my side threatening to upset my balance. It got so bad at times that my confidence completely left me and I was left stranded at the top of the stairs too afraid to risk stepping off the landing and walking downstairs. Eventually my legs and general body strength became so weak that I was unable to get off the bed without assistance. This brought with it further stress because of the need to visit the bathroom during the night and the risks it would entail. Finally of course I had to seek an alternative solution for the call of nature which led to some initial embarrassment on my part.

Further embarrassment followed as I lost control of the fingers in my hands. Above all else I was desperately trying to hang on to at least one shred of dignity and for a few weeks I struggled and struggled to hold onto toilet tissue long enough to use it. Eventually my hands became so useless that the tissues would simply fall through my fingers. I then faced the embarrassing situation of having to ask someone to perform this most personal of daily tasks. I felt truly awful.

In the run-up to losing the ability to bear my own weight last summer I used to dread having to stand up to go to the bathroom. I would practically be a prisoner all day long sitting in a chair only moving when I absolutely had to. Even then I required an increasing amount of effort from my carers before I was upright and stable. On wobbly legs with my carer close at hand I would stumble along to the bathroom. When my legs finally gave out it was something of a blessing in disguise as all the stress I had been dealing with everyday suddenly went away. No longer was I fearful of falling over.

And that brings me up to date with my emotional journey so far.  I am now living with the real fear of a fading respiratory system and all that entails making me effectively a ‘positional prisoner’ spending large amounts of time on the bed afraid to go too far for fear of suffocating. I have become heavily dependent on TV and computers for sensory stimulation. I’m very conscious of a ticking clock counting down the time left to me.

What I hate so much about this awful disease is that it is not enough to just take your life; it has to systematically dismantle it first by taking away so much that makes living enjoyable. Some time ago now I had a lovely dream in which I was cycling down the country lanes I used to so frequently pass through when I was healthy. The sun was shining, the sky was blue and there were fluffy white clouds as far as the eye could see. The fields were full of sheep and cattle and occasionally I would spot a horse. As I cycled past the hedgerow with its brightly coloured wildflowers, small rabbits would hop back into their burrows whilst colourful butterflies would flitter about the hedgerow. I was cycling fast, muscles pumping hard, enjoying the exhilaration of wind passing on my face and through my hair. Suddenly something didn’t feel right and as I slowly retreated from the dream I began to feel disoriented and couldn’t understand why I couldn’t move my legs and arms any more. The full force of where I was and what I had suddenly hit me and in that moment I could feel the tears well up in my eyes for everything that I had lost. In that moment of grief I would have given anything to return to that moment and live there.

Sometimes I lie in bed pondering the question of why me, turning it over and over in my mind, as if it was a Rubik’s cube and I’m desperately trying to find the combination that will reveal the truth. A futile exercise of course, but just an example that the disease is never far from my mind. How does it make me feel? Well I got it at 46 so I suppose the truthful answer is that it makes me feel that I have been cheated out of precious life and by several decades. I’m not bitter, just saddened and frustrated. Sometimes there is even a feeling of guilt – did I put myself in harms way by doing something, or perhaps going someplace or maybe even eating something that triggered it at some point in my past?

Do you know what the cruellest part of all this is? My mind is the same as it ever was, with the same hopes and dreams and ambitions but it’s trapped in a broken body whose warranty has run out and there are no spare parts. There is a countdown clock hovering above my head that I’m powerless to stop it. I’d cry if it would do any good. I remember reading some time ago that to find any kind of peace with something like this you need to find a way to come to terms with life the way it is not the way it was. In other words stop grieving for what has been lost. It’s good advice but it’s something I’ve never been very good at following. So where does that leave me? Exactly!

Having to give up hobbies and interests that gave my life meaning and helped define me as a person has been heartbreaking. I really miss the thrill of composing a photograph and holding a camera, or going out cycling or walking, or even just pottering around in the garden. At times it seems like my world has contracted down to a hospital bed about 6ft x 3ft even though my mind yearns to be free.

Has MND brought me any happiness or can I extract anything positive from my experiences? Surprisingly perhaps the answer is yes. I’m certainly not the kind of person to allow myself to wallow in self-pity and depression for years and if I ever get the energy to write something like this again I will put a few words together on that subject. But the purpose of this post was to describe the emotional rollercoaster that living with MND can be as you try to keep up with an endless series of losses.

Having MND is a bit like chopping into the roots of an old established tree. Eventually it will die but it will be a slow death. Come back tomorrow and it will still look the same and the day after that but its fate has already been sealed. My own fate was sealed from the moment those very first neurones started dying but like the big old tree my body has taken a few years to shut down. What is it like living with motor neurone disease? The only true answer I can give you is that it is a descent into hell.


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Tuesday, July 5th 2011

The first week of full-time care

It’s now been a week since I returned home and moved to 24 hour care. The transition has gone very smoothly I’m pleased to say. Filling in all the blank spaces so that I am never without somebody else being with me has given me greater peace and security. One big fear I’ve had since losing my mobility has been the thought of being trapped alone in a burning house. Now that fear has been removed and I feel more at ease. Most of the extra time I’ve gained is of course ‘invisible’ to me as hopefully I will be fast asleep. Nevertheless I have been able to spend a little bit of time getting to know my new waking night nurses.

I have a new mattress. The one I was previously using (just a foam core) was not designed for continual use like I am subjecting it to now. The new one I have is a super duper alternating pressure mattress designed for constant usage. Over the past year or so I’ve tried several types and the only one I could really get on with was the most expensive one (which I’ve been using at the hospice) which is not available in the community. However, the kind folks at the hospice have been able to negotiate with the MND Association for them to lease one on my behalf. It arrived a few days ago and has already made a big difference to my comfort level.

Now I am back home I’ve been able to play around with my wheelchair to see what positions I can tolerate. Unfortunately it doesn’t look like I’ll be able to continue to work at my computer whilst sitting in a wheelchair because sitting upright causes shortness of breath and difficulty speaking. As this is the way I operate my computer it will no longer be practical as I would be out of breath in minutes. What I can do however is to lie in a semi reclined position and either sit on the patio or watch TV for a few hours. All work on the computer is now being done from my bed with a small table positioned over the bed with my laptop placed on top. At least this way if I get tired I am already in the best place to relax.

I’ve been suffering from terrible skin irritation lately. It’s mainly around the underside of my lower legs, basically the area in contact with the mattress. We’ve been trying various creams without success and we’re still looking for a solution. I’m also feeling very tired lately. I just cannot seem to keep my eyes open for very long. I must spend half my day drifting in and out of sleep. No wonder I don’t seem to achieve much any more. Concentrating for long periods is slipping away.

Apart from that the past week has been a busy one for appointments with district nurses and doctors making regular calls. I’ve spent most of that time in bed reading books and magazines during the day and watching TV and video at night.


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Tuesday, June 28th 2011

Home again and the beginning of the next phase

I was discharged from St Michaels Hospice at 4 PM this afternoon, four weeks exactly since I was admitted. Over the past 12 months I have spent a total of three whole months (spread over three visits) at the hospice which makes this my second home! Before moving on I would just like to express my sincerest gratitude once again to all the staff and volunteers at the hospice who made my stay there a very enjoyable one. I know I’ve said this before but truly if you could take what they have at the hospice, scale it up, and wrap it around the world, then the earth would be a much better place for everyone.

I had mixed feelings about leaving the hospice because I knew that I was entering a late stage of the disease and that effectively I was going home to die. That may not happen just yet of course but it is certainly something that I am acutely aware of every time I try to breathe. The agreement I have with the hospice however is that should my difficulties become too much to manage at home during the final stage then I will transfer to the hospice, otherwise my desire is to spend my remaining days in my own home with the hospice at home team supporting me there.

I have some new equipment in the home that needed to be in place before I was allowed to be discharged. The equipment is an oxygen concentrator, a machine for providing oxygen in the event that I suffer another shortness of breath episode. We also have an oxygen cylinder as a backup in case of power failure. I would stress however that this equipment is only going to be used in emergencies. I am not planning to spend my days hooked up to an oxygen supply.

My new 24 hour/7 day a week care package commences this evening meaning that the number of hours care I receive increases from 84 hours to 168 hours a week! Previously there were several gaps in the day where I was alone. With my breathing in decline that is no longer sensible so I now have a waking nurse each night and a carer to fill in the afternoon gap where I used to have some time to myself. I had fought to maintain some degree of independence for as long as I could but even I was ready to accept the changes after recent events. It will seem strange at first always having someone here with me but also reassuring. Tonight we begin with a nurse from the hospice at home team.


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Sunday, June 26th 2011

Life at the hospice

It’s been a couple of weeks since I last gave you an update on how things are progressing here at the hospice so I thought I would spend the afternoon bringing you up to date.

My health continues to decline and for a while at least threw a new surprise at me in the form of heart palpitations which persisted for four nights. Not recalling ever experiencing this it was rather frightening waking up in the early hours of the morning to find my chest pounding away and not even in a smooth rhythm but rather erratic. The cure was found when we removed all the tablets I was taking in the evenings. Phew! The last thing I need on top of everything else is a dodgy ticker! As for the tablets, well I can live without them as they are not critical. In fact I’ve just decided to stop taking Riluzole altogether after being on it since 2007 as I now feel that any benefit it could have given me is now behind me. In fact everything that I have read about it suggests that at most it will give you another 2 to 3 months of extra life. That’s one less thing to worry about.

I’m still experiencing problems breathing particularly when sitting upright and I’ve already had a couple of minor frights when it felt like my breathing had rapidly declined and I was starting to struggle for breath. For this reason I have become very wary about going anywhere in the wheelchair for fear of running out of breath. Consequently most of the past couple of weeks have been spent in bed although not always in my room. On a couple of occasions the staff wheeled my bed into the conservatory so I could enjoy a change of view.

I’m really grateful that I’m allowed to use my computer at the hospice. Without it I have no idea what I would do all day other than get bored. Oh and thank you Jason and Chery for those lovely earphones you bought me last year. They are really coming into their own lately as they enable me to listen to music whilst working away without speakers interrupting the microphone. Having a good selection of electronic books and magazines has also kept my mind entertained and engaged.

Working busily in the background the folks at the hospice and my care agency have been busy arranging extended care for me for when I go home. Yes after a long battle to maintain some independence I am moving to 24 hour care in my own home. I’m sure my family will be relieved to hear this! Truthfully so am I now that the disease has reached the state it has. So this will be my last weekend at the hospice. I am due to leave on Tuesday although this has not yet been confirmed.

I’ll leave you with a few pictures that Suja kindly took of me working on my computer recently.

In bed at St Michaels Hospice. 17th of June 2011In bed at St Michaels Hospice. 17th of June 2011


In bed at St Michaels Hospice. 17th of June 2011

In bed at St Michaels Hospice. 17th of June 2011


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MND awareness week 18-26th June

For the want of an arm

I’ve been thinking recently about how big an impact on your life the loss of a single limb can have. So much would change if I only had the use of my right arm. Here are 20 things that I could do for myself once again:

Scratch myself

Brush my own hair

Give myself a shave

Brush my own teeth

Wash my own face

Put my glasses on

Turn the pages of a book

Feed myself

Have a drink (without using a straw)

Pick up and reposition things

Shake hands with people

Point at things

Wave at people

Write my name

Operate a TV remote

Operate a computer keyboard

Pick up and operate the phone

Smooth out creases in fabrics

Operate an electric wheelchair

Work a camera

And that’s just one limb!

Given enough time MND will rob you of the use of all four limbs. And your neck. And your speech. And your swallow. And ultimately your breathing.

It’s MND awareness week here in Britain. Up and down the country people from the MND Association will be collecting for much-needed research and to help those struggling to live with it. On behalf of all those like myself please can I ask that you give generously for this very worthwhile cause. Thank you very much.


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Sunday, June 12th 2011

Settling back in

Today has been my 11th full day back at the hospice. I’m pleased to say that some of the apprehension I was feeling when I first arrived has slowly dissipated. My breathing is still a big concern to me of course especially as I am reminded of it every single day. However it doesn’t preoccupy my thoughts to the same degree that it did a week ago. The memory of that frightful suffocating experience is fading away thankfully. Good job our minds have a built-in defence mechanism otherwise we would be forever tortured by harrowing experiences from our past.

I have been able to take advantage of the hospice’s wet room on several occasions so I can enjoy an exhilarating shower. How often I do it depends on what I wake up like. My positioning is still playing a key part in how easily I can breathe. The more upright I become the harder it is. I’m guessing this has something to do with all my weight bearing down on my diaphragm which is just about the only muscle keeping me breathing, a somewhat chilling thought. I did have a bit of a fright today in fact when I was left sitting upright for a few minutes too many and began to struggle to breathe. So it’s certainly seems like I have turned another corner and I am now resigned to the fact that I will spend a greater degree of my time in a semi-reclined position.

I’ve been trying some tablets lately to help me get some rest at night. Getting to sleep lately has been rather difficult so the doctor prescribed something which might help. Trouble is I now have the opposite problem because in the mornings I have a devil of a job waking up!

I had a meeting early in the week to discuss what happens next and would I like to go home? Good question. If I was literally at death’s door I would probably ask to stay here and spend my final days in the company of some wonderful people. However MND is a very unpredictable disease as I know full well from my own experiences. It’s true that my breathing is very weak but this situation could stabilise again and go on in a similar fashion for a few months if not longer. Therefore it is my intention to go home again. However before I can do that we need a mechanism in place so that if I should suffer another breathing episode there will be equipment and trained staff on hand to deal with it. And because of recent events it will mean a transition to 24/7 care for me. That of course equates to money and finding the right resources.

I’ve brought my Possum Primo environmental control system to the hospice as we discovered that it is capable of operating my wall mounted TV system. Now I can lay in bed at night and watch and control TV myself. Neat! It’s like a little bit of home from home.

The rest of the week has been a rather pleasant one. I’ve had three complimentary therapy sessions in which my shoulders, hands, and feet were subjected to a very enjoyable massage with sandalwood and Mandarin oil. I’ve had visits from my aunt and uncle as well as an old friend from work. Thanks Ted, your infectious laughter soon brought a smile to my face. Great seeing you again. The upbeat nature of the week has left me feeling a lot better in myself and more positive to. I’ve even been able to eat a little bit more than I have been lately. Clearly then feeling good is all about surrounding yourself with positive experiences and good people. It may not stave off the inevitable but it sure does make the time available that much more enjoyable.

With my friend Ted at St Michaels Hospice. 11th of June 2011. Photo courtesy of Suja


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Saturday, June 4th 2011

Return to St Michaels

On Tuesday this week I was transferred to St Michael’s Hospice where I have been ever since. I think the intention is to see what can be done to manage my breathing difficulties, possibly try BiPAP again, and sort out what to do about my care package, none of which had been discussed with me yet.

Unlike the constant hustle and bustle of a busy hospital there is a calming influence here at the hospice which I find much more restful. I’ve been able to get into the newly refurbished garden and Labyrinth on several occasions and just being able to get some fresh air and sunshine has made a world of difference. I’ve also got access to my computer again so have something to occupy my mind. My breathing is still giving me a lot of concerns though. I am not sleeping very well and in fact I’ve had several nights where I’ve not got any sleep at all so I’m feeling quite exhausted. Also my breathing is now starting to be dictated by the position I am in. It is for instance becoming harder to breathe normally when sat in an upright position and it is already causing problems when I use my shower chair during the mornings for my personal care. Also I am now having to use the wheelchair reclined back further and I am spending more time lying on the bed catching my breath. In fact this is now where I am using the computer – lying back in bed. But dictating into my microphone is leaving me exhausted so I am steadily reducing the hours I can use it. In addition to all this I am now starting to take anti-sickness pills several times a day to combat the queasiness I feel around mealtimes. After last week’s breathing episode I feel I have turned another corner with this disease and I now face learning to live with reduced abilities once again.


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