Third Anniversary

Three years after being diagnosed with Motor Neurone Disease

Three years ago today I received a diagnosis to a condition that had been baffling me since early that year: a weakening in the arms. Until I received that fateful news I just assumed that it was something that could either be treated or at least managed. I had resisted attempts to self diagnose through the Internet believing that a little knowledge is a dangerous thing, and medical diagnoses is best left to the experts. The idea that I might be here for only a short while longer never even entered my mind. After all why would it, I was still only in my forties and in all other respects I felt fine. And so I went about my business, anxious of course to know what it was, but also believing that everything would be okay. I just needed to get the diagnosis out of the way, accept the treatment and carry on with living!

Unfortunately it was not meant to be and on that cold November evening life threw a juggernaut at me in the shape of MND which completely and utterly changed the course of my life. In fact juggernaut (a force that is relentlessly destructive, crushing, and intensive) is a good way to describe what living with motor neurone disease, and trying to deal with a constant loss of physical abilities, is like.

And so here we are three years down the line from that fateful day when my life changed direction and sent me off on a reluctant journey. I look at myself today with a mixture of sadness and relief. Sad for all that I have lost or been forced to give up, whilst relieved of course that I’m still here at all. But there’s no getting away from the fact that this past year has been a truly awful one for me, the worst in fact in my entire life. Each year that I’ve lived with the disease has its own milestones; key events that stand out in my memory. During the first year it was giving up driving, working, cycling, photography, gardening, DIY, and cooking for myself. In other words all the physical things that enable us to earn a living, move around independently, maintain our homes and pursue hobbies and interests that make life interesting, rich and rewarding. During the second year it became a lot more personal as I said goodbye to washing, shaving, dressing, and feeding myself. Pleasures like reading books and magazines gradually slipped away, as did personal freedoms like climbing stairs and most walking.

This past year has seen me lose my remaining mobility which has effectively consigned me to living out my remaining waking hours confined to a wheelchair. Losing that last bit of mobility has had a profound effect. It has meant a complete loss of all my remaining dignity as I am no longer able to perform even my most personal care myself. I have now reached the point where I am totally dependent on others and have carers with me for practically all my waking hours. This year has also seen me confined to the house for long periods of time, and the frustration it has brought in knowing that I am wasting precious time has taken a terrible toll on me (although I try as much as possible not to outwardly show it). The long-running saga of trying to get an extension built on the side of my house has also caused me endless worries, as disease progression far outpaced my attempts at getting the house adapted to cater for it. I never dreamed it would take this long and at the time of writing this it is still not complete! On top of all this I’ve had all the additional stress of trying to secure alternative care arrangements after the agency I’d had since the beginning said they could no longer support me. Oh yes and let’s not forget the fact that I have spent more than two months of this year in a hospice! So all in all it’s been a lot to deal with.

Looking ahead I’m under no illusion and know that the coming year is going to be a very difficult one for me. I know that the disease is starting to encroach on life critical systems and indeed at times I can even feel it in my breathing. Anyone who’s been reading this blog since the start will know that my respiratory function has been in decline all along. Fortunately for me, possibly because of all the cycling and walking I used to do, I started well above average. But the last three years have seen that advantage whittled away. This year has seen a number of signs indicative of a respiratory system that surely by now must be flashing amber if I was to take the trouble to have another lung function test. An example of this is how I sleep: I started the year sleeping quite normally, that is to say horizontally, in my own bed. Nowadays though I use a profiling bed which has required a number of adjustments over the months to increasingly elevate my upper body to compensate for weakening chest muscles. Another example is how little energy I seem to have lately and indeed how hard it is some days to fully wake up. This weekend for instance I had a devil of a job to wake up. I must have fallen into such a deep sleep that wherever I was was where I wanted to be. I just didn’t seem to have much desire to return to the land of the living. A worrying development.

“I once gazed upon the face of Medusa and now I’m turning to stone!” That’s how it feels some days, this feeling of being trapped and slowly entombed in a body that no longer responds to my wishes. Paralysis to this extent must be one of the worst things to befall a human being. We evolved as a highly mobile species. This goes against everything that we are meant to be. Having lived all my life until recently with the gift of full mobility I can do nothing but grieve for what I have lost. Even now whilst writing this post I look out the window and see the beautiful autumn sunlight casting shadows on the green play area opposite my house and lighting up the trees. I would give everything I have to be able to stand up, walk downstairs, get my bike out of the garage, and go cycling down the country lanes and feel the thrill once again of air rushing past as my muscles worked hard propelling me forwards. It’s been said that to be able to live with MND you need to focus on what you can still do and not grieve for what you have lost. It is good advice but sometimes, believe me, it is so hard to follow. What is MND? It is quite simply a descent into hell! Perhaps it’s no surprise then when I tell you that there are days when I long for bed and the oblivion of sleep.

Looking back on the previous two anniversary posts I can see that this one certainly has a darker tone to it. That to some degree is inevitable with a progressive disease like MND. This cumulative effect of losing one ability after another, year after year, will inevitably take its toll. Life is full of challenges at the best of times but it sure makes things harder when you are unable to do anything for yourself. Since the very beginning of all this I’ve felt like I’m in a race to try and keep one step ahead of a disease that keeps moving the goalposts. I rely heavily on the goodwill of the people around me nowadays… and technology.

This year has been particularly bad but I’m hoping, despite declining health, that the coming year will actually see an improvement in my quality of life (for a while anyway)! I’m hoping that I’ll be able to get out more and see and do things once again. I’m also hoping that I’ll finally get the care package sorted out once and for all. All this stress is not good for my health!

Before I sign off I would like to say a big thank you to all my family for their love, my carers who do such a wonderful job of looking after me each day, and the healthcare professionals that are supporting me. I wouldn’t be here without you! I would also like to say thank you to my friends and to express my gratitude to all of you out there who have been kind enough to drop by, especially those who take the time to leave a comment. Many thanks, it means a great deal to me to get feedback. I do hope that you will stay and keep me company in the year ahead!

And finally… I’m in a bit of a reflective mood today so I thought I would end with a couple of then and now photos that illustrate more than words alone could ever do the dramatic change brought on by this horrific disease. My thanks go to my friend Bill for providing the old photo and to Debbie for taking the new one this morning.

Autumn 2000. Seen here with my colleagues at Eli Lilly. At the time of this photo I was participating in a computer implementation project. I have a lot of good memories of my time spent working here. Really nice people and interesting and challenging work.

Flash forward 10 years and taken today. Still here and celebrating my third anniversary with my constant companion. I've swapped work colleagues for a stuffed meerkat! This is where MND has brought me! 🙂

Mark

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World Hospice and Palliative Care Day

This post’s got quite a history. Originally intended to follow on immediately after my discharge at the start of August, the piece ‘in praise of my local hospice’ (as it was originally titled) was my attempt to put a few words together in recognition and thanks for all the wonderful care I received at St Michaels Hospice. It somehow seemed fated not to be written as recent events took over forcing it to be continually rescheduled. Then with my second admission to the hospice I decided that it would be the first post I would publish once I was discharged. However with World Hospice Day (October 9th 2010) upon us (something which I didn’t even know existed) it seemed the ideal opportunity to do something in recognition of all the wonderful things that St Michaels, and indeed hospices all over the world do to ease people’s suffering and to allow them to live out the remainder of their lives with as much dignity as possible. I’ve also taken this opportunity to upload a new gallery of photos that were taken during my first visit to the hospice but were never posted. You can find them here.

What comes into your mind when you think of hospices? Well if you’re anything like I was before all this happened, it would be something along the lines of ‘it is a place to go to spend the last few days or weeks of your life’: in other words once you go there you never leave. I must admit that I was a bit apprehensive about meeting them at first. Bear in mind that I had only been diagnosed a few months earlier. I was still working, still driving a car, and already my GP was telling me that my case was being discussed with the hospice and would I like to meet them? Why had I appeared on the hospice radar so soon? Were the doctors not telling me something? Did I have less time left than I thought? It was to be honest quite a shock to hear the ‘H’ word in conjunction with myself for the first time.

Lara, my palliative care doctor, soon re-educated me when she first introduced herself to me and described the range of services that St Michaels Hospice offered. I’d been given something of a standing offer to come along and visit their day care centre and to take advantage of such things as alternative therapies, but I had always shied away. I felt that I wasn’t quite ready to visit a hospice despite now having a greater understanding of their role in the community. And to be honest it probably would have stayed that way for even longer had it not been for the sudden change in my situation back at the end of June when my legs finally gave up all pretences at trying to support my body. Fortunately I’d already had a taste of hospice care through their relatively new hospice at home service when I was suffering terrible pain all night in my lower spine earlier in the year. Because of this it made the transition to full in-house care that much easier to accept and I’m very pleased to say that all my experiences of life inside a hospice have been incredibly positive.

In my time at St Michaels I’ve seen a level of professionalism, care and concern that is simply hard to match. In fact I would say that it is the gold standard in care, certainly in this area. The local care agencies would do well in learning from them and using them as a benchmark. Take recruitment for instance, without exception everyone I came across was a genuinely nice person who would go out of their way to help you as much as possible. Nothing seemed too much trouble. They were kind, courteous and very friendly. The hospice also has an ongoing training programme and clearly believes in investing in people – and it shows!

What also impresses me is the tremendous team spirit and the way everyone acts in a professional and yet friendly manner, all the while offering you maximum dignity especially when performing personal care. They are also very good at communicating their intentions ahead of actually implementing them. For instance whenever I’m hoisted the staff will describe each step of the process before proceeding. Contrast that with some of the agency workers I’ve had who spend more time chatting to each other than focusing on what they’re doing.

The atmosphere here at the hospice has a very calming effect. Nothing seems rushed and things take as long as they need. Don’t get me wrong, I’m sure that behind-the-scenes there is a great deal of work going on supporting the in-patients, but they never let it show.

But St Michaels isn’t just about having an in-patient unit although that is clearly the one I have had the most experience of. It also has an expanding hospice at home service as many people wish to be cared for in their own home environment for as long as possible. In addition there is a day care centre where patients living at home can come twice a week and participate in such things as arts and crafts (for instance there is a lovely conservatory that has been made into a woodwork workshop where people can build such things as birdhouses and miniature wheelbarrows) or just enjoy companionship and lively debate. Amongst the other services that the hospice offers is a full range of complementary therapies some of which I have sampled myself and found to be very stress relieving.

Running a hospice, particularly one that offers such a wide range of services to the local community doesn’t come cheap in this day and age and the sad fact is they get very little money from the government. Consequently fundraising is absolutely crucial in enabling the hospice to continue offering the high level of care that they do and events like the Big Wheel and Midnight Walk have become regular and popular local community events. Like all charities they are heavily dependent on volunteers, and St Michaels is fortunate to have between 600-700 volunteer staff who bring with them a wide diversity of skills and life experiences which enable them to fully support the hospice staff in a wide range of areas.

And so we come to World Hospice and Palliative Care Day which is to quote “a unified day of action to celebrate and support hospice and palliative care around the world”. You can find out all about it and this year’s theme of ‘sharing the care’ here. If you want to find out what’s being organised around the world today to raise awareness (and much needed funds) please click here. If you would like to make a donation to St Michaels Hospice please click here.

In closing I would just like to express my gratitude to all the wonderful people I’ve met, who take such good care of me and have made my stays here at St Michaels Hospice very peaceful and enjoyable. I’d give them all a medal if I could. I just wish we could take what they have at the hospice, scale it up and wrap it around the world. The world would be a much better place for it.

So please join with me in recognising and appreciating the work done by these hard-working and dedicated people on this, World Hospice and Palliative Care Day.

Mark

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Thursday, August 26th 2010

Two nice surprises!

I’ve been feeling really tired and weak lately. It’s been getting harder to wake up in the mornings and even when I am awake I still don’t feel I have that much energy to tackle the day ahead. This morning I felt so tired that I went straight back to bed after all my personal care was done, and in an effort to conserve some energy didn’t get up until midday. It’s the first time since having MND that this has happened. It was probably just as well that I did because my carers and family had arranged a surprise birthday outing to Audleys Wood Hotel for afternoon tea and I was going to need some energy for that. But first they had to get me down the stairs…

Debbie had made arrangements with a private ambulance company to get me down the stairs and up again later in the day. So shortly after midday two very friendly ambulance men from Southern Country Ambulance Service, Darren and Andy, turned up and after having hoisted me onto a stretcher chair, carried me down the stairs. Being the nice guys that they were they even brought my wheelchair down the stairs to save my carers struggling. The last part of their involvement (until I returned home later in the day) was to transfer me from the stretcher chair to my wheelchair where I would sit patiently until the taxi arrived.

In the meantime Debbie had arranged another little surprise for me, and it wasn’t long before there was a knock at the front door and in walks Francesca, who I had not seen for a while, wearing a big smile and bearing a card and present for me! She had taken some time out of her work day to wish me a happy birthday and to see how I was. And so for a short while we were able to enjoy each other’s company and to catch up on what had been happening. I had missed Francesca’s involvement in my care (as well as her friendship, IT support and blog photographer rolls) and it had been a sad day when her other work commitments took over. But here she was with Ann and Debbie and for a brief moment it felt like old times. Well I just couldn’t let the moment go without getting some pictures so here they are…

An unexpected but very pleasant surprise visit from Francesca

With Francesca and happy 🙂

With Debbie and Ann, two of the three architects responsible for my birthday treats (the other being my aunt)

Ann and the birthday boy!

Sometime later a taxi pulled up outside the house to take me to the hotel. Unfortunately despite explaining to the taxi company exactly what sort of wheelchair I had at the time of making the booking (and them saying that they could do it), we soon hit problems. As I was wheeled up the side entry ramp into the taxi I almost had the top of my head chopped off as the taxi driver suddenly realised that I was sitting too tall. So back down the ramp we went and in the process grinding the chair on the pavement. A few adjustments later and I was more reclined in the chair so able to enter the taxi. Unfortunately in this reclined position the wheelchair could not be turned to face the rear seats, and as the taxi driver was quick to point out, without being able to do this he would not be able to take us anywhere. So in the confined interior of the taxi the chair had to be readjusted into an upright position so that it could be spun around and held in position by a safety belt. However, I was now in a very uncomfortable position. My head felt unsupported and liable to topple forwards unless I held it firmly in an upright position, however this meant that the top of my head was then being pressed firmly against the roof of the taxi. Just as well then that we didn’t have to travel that far out of town to reach the hotel because I certainly didn’t feel that safe and it was very uncomfortable. When we arrived at the hotel the taxi driver surprised us with the news that his particular vehicle was being taken off the road at 4 PM and that we would have to contact the booking office after 5 PM to arrange for return transport (never mind the fact that this had already been booked and made clear). Not a good way to start the afternoon.

Audleys Wood Hotel is a 72 bedroom four-star luxury hotel built in the 1880s and recently refurbished. We had to enter via a side entrance as I believe the front entrance isn’t wheelchair friendly. Even so, the corridors leading to the room we had reserved were rather narrow so some expert wheelchair driving was called for! The grand drawing-room where our afternoon tea was served was very ornate with its high ceiling, dark wood panelled walls, a large fireplace, hanging tapestries, a very long wooden table that you would need binoculars to see the end of, and high back padded chairs.

Our traditional afternoon tea arrived with pots of fresh leaf tea and silver trays filled with daintily cut finger sandwiches with various fillings including (of course) cucumber, ham and wholegrain mustard, and egg and cress. This was followed with freshly made (and still hot) scones with strawberry preserve and delicious clotted cream. And to finish off a large assortment of cakes were provided, but by this time I was struggling to find room! My appetite just isn’t the same anymore but hopefully everybody else in our little party had plenty to eat. They certainly seemed to be quite generous with the amount of food being offered but perhaps that was partly down to the fact that we had anticipated more people coming!

Not a great picture technically but one of the few I was able to do anything with from our afternoon spent at Audleys Wood Hotel. Shown here are my brother and his wife, my nephew, my cousin and my aunt and uncle

With my aunt Joan, cousin Suzanne and uncle Alan at Audleys Wood Hotel

When it came time to leave we were in for a shock. The taxi company informed us that they had no suitable vehicles available and were not even prepared to organise alternative transport for us via another company. Eventually Debbie managed to locate another company but it would mean being stuck at the hotel long after we were due to leave and jeopardising our meeting with the ambulance crew who would be getting me back upstairs. In the end it was Alli who saved the day by asking her father (who drives a minibus for disabled children) to come and pick us up. What a lifesaver! Unlike the taxi, this vehicle had a proper tailgate lift that made getting in and out so much easier, as well as a nice high roof and a means of locking the wheelchair to the floor. So I was able to travel home with the back of the wheelchair reclined slightly and feeling a lot more safe and secure. By the time we got back home the ambulance crew were already waiting for us and within a short space of time I was back in the safety of my study.

In the stretcher chair and ready for carrying back upstairs! With Darren and Andy, the friendly ambulance men whose job it was to get me safely up and down the stairs.

So that was it, my afternoon out was over in a flash. I’m sorry that there aren’t more pictures to share. The abysmal weather prevented us from going outside and making use of the grounds, and the inside of the hotel was rather dark (although some might say atmospheric), so my camera struggled to produce good pictures when set to ‘auto everything’ which is the only way that other people will use it.

My thanks to everyone who came along this afternoon. I hope you all enjoyed yourselves. For those who couldn’t make it, please see me after class! Special thanks go to Debbie, Ann and my aunt Joan, who organised the afternoon. Also a special thanks goes to Alli and her father for saving the day! And lastly, thank you Francesca for dropping in this afternoon, I was really happy to see you again.

Mark

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Tuesday, August 24th 2010

50!

Today I celebrate having completed 50 orbits of the sun! smile_party

According to a NASA website the Earth travels about 940 million kilometres a year as it orbits around its parent star. That’s about 584 million miles a year. So in my lifetime I have travelled 47 billion kilometres or 29.2 billion miles. And that doesn’t even include the distance travelled as our solar system moves through the Milky Way Galaxy, or as our galaxy moves through the Universe. Phew! No wonder I feel tired. And yet despite all that travelling I haven’t actually worn out that many pairs of shoes smile_regular.

It’s quite a sobering thought to think that I have now lived for half a century! But the thing is I don’t actually feel anywhere near fifty and yet here I am, a fully paid-up member of the ‘village elder’ club smile_regular! To think, people will now come travelling from far and wide to hear me dish out little nuggets of wisdom like ‘don’t do it’, ‘I wouldn’t if I were you’, ‘it’s not worth it’, ‘think of the consequences’. Or maybe not!

The fact that I was 50 today was kind of hard to ignore as I was wheeled out of my bedroom this morning and along the landing into my study. The route was emblazoned with banners, strings of multicoloured ’50’ numerals and brightly coloured helium balloons! Debbie had been busy last night after I went to bed! I didn’t have the heart to tell them that I was actually 40! Well, 50 is the new 40 as far as I am concerned, he he.

The celebrations kicked off around 11 AM with a surprise visit from Poppy, Ann’s delightful little granddaughter, who came bearing gifts: a very large helium balloon and a delicious looking birthday cake (and I can vouch for the fact that it was delicious because I had several pieces today)! Shortly afterwards we were joined by my aunt and uncle, who I spent an enjoyable morning with opening cards and eating birthday cake. And that is how the day went really with people dropping in during the afternoon and evening with cards and presents… and more balloons. To be honest it was the opportunity to chat and socialise and have company that I enjoyed the most. So thank you to Jim and Val, my friends from Basingstoke NeighbourCare, to my brother Jason and his wife Chery, and to my friendly next door neighbour and his family, all of whom I spent some time with today. And thank you Chris, for the phone call from Scotland! Wish you could have been here today to share it with me.

With Poppy and Ann

With my uncle Alan and aunt Joan

Balloons for sale! Step right up... Anyone you want! 🙂 Anyone would think I've turned 50!

Just a man and his meerkat. One of the presents I received.

With my brother Jason and his wife Chery

With Alli

Because of my love of wildlife, Meerkats being a particular favourite (long before a certain comparison website’s TV adverts), there appeared to be a definite theme running through my presents this year with a Meerkat drinking mug, coasters, and a beautiful photograph printed on fabric that will take pride of place on one of the walls in my extension soon. So thank you to everyone that has been a part of today. It was all very much appreciated.

And finally… one of the more interesting things I received for my birthday was a high-powered microscope smile_wink! At last I would be to keep an eye on those little rascals that are causing me so many problems lately. It even has a built in picture taking mode so I’ve been able to take a few snaps already to see what they’ve been up to. Take a look yourself…

Captured on film and magnified an incredible x20,000. This sub-microscopic shot shows a rare glimpse of Mr Neurone and his fellow neuronettes celebrating my 50th the only way they know how! 🙂

This one amazed even me and I still haven't yet worked out how they managed to achieve it! In a tip of the hat and gaining inspiration from air forces the world over, my naughty little neuronettes have arranged themselves in 'missing muscle formation'. I had to use cutting edge special lighting techniques (i.e. a blue Quality Street wrapper pulled tight across a penlight torch) on my ultra expensive state-of-the-art Fisher-Price microscope to show up this delicate arrangement! 🙂

Mark

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Second anniversary

Two years after being diagnosed with Motor Neurone Disease

Until recently I considered myself as one of the lucky ones. I went through my entire adult life with barely a cough or cold. I used to congratulate myself on my good health and give thanks that I was not like some other poor unfortunate people. But in the summer of 2007 it was becoming obvious that something peculiar was happening to me. What was happening to my strength? Why was it becoming increasingly difficult to hold my arms up for any length of time? Jobs around the home and garden that required extensive and repetitive movements were beginning to tire me out, whilst lifting boxes of office documents at work were starting to feel heavy. And yet in every other respect I felt fine. There was certainly no pain or any form of discomfort. It was a mystery. My doctor was as mystified as I was so in the early autumn of 2007 I was referred to a neurologist and thus began a series of tests over the next two months that would eventually, by elimination, rule everything else out leaving only the horror that is MND.

It was two years ago today that I received my diagnosis. At that time I didn’t really know anything at all about the disease so couldn’t totally comprehend what it meant or how I would live with it. Nevertheless being given a diagnosis of an illness that cannot be slowed down, stopped or reversed, and being told that my life would be significantly short was devastating enough. Just how do you cope with the knowledge that fate has dealt you a cruel blow and will rob you of decades of life? I wept for a future I would never see.

So here we are in late 2009 two years on from that terrible evening when I sat across from the neurologist in that bright but sterile consultation room listening to the worst news of my life. So do I still think I am one of the lucky ones? Actually yes, because I’m still here when other people diagnosed after me have sadly already lost the fight. Nevertheless the effect of more than two years of nerve degeneration and muscle wasting have taken their toll and have impacted so many aspects of my life. In the first year after diagnosis I lost two cornerstones of adult life: the ability to work and support myself financially, and the ability to drive a car and the freedom that brought me. I also had to say goodbye to cycling, something I really enjoyed during the warmer weather. It also meant giving up all hopes of being able to maintain and improve my house and garden myself. And in this past year it has become a lot more personal as I had to say goodbye to dressing and undressing, washing and shaving and even feeding myself. Hobbies and interests that I’ve had with me all my adult life such as reading a good book or the sheer enjoyment of composing and taking a good photograph are becoming nothing more than a memory. I can’t even hold a pen to write my name anymore.

To illustrate where the disease has taken me in the space of just two years just consider bedtime. A carer arrives at 9 PM to brush my teeth, undress me and tuck me into bed. There I lay barely able to wriggle or lift my head off the pillow, my arms almost helpless resting on my legs whilst an emergency lifeline call switch is strapped to my ankle. I cannot turn onto my side so have to lay on my back all night. My shoulder blades constantly feel like they are digging into my back making it very uncomfortable to rest in the same position. If I get an itch all I can do is try and ignore it. If the duvet slides off me then I’ll spend the rest of the night uncovered. If I need to visit the bathroom in the night I have to hope and pray that I can find enough energy to roll sideways and catapult myself off the bed. The simplest of life’s routines have become traumatic.

In the first year I lost all motor control for my arms so that they are now nothing more than dead weights. This was cruel enough as we use our upper limbs to interact with the world around us but at least I could take some consolation in the fact I could still get around easily enough. But it was short lived as I have had to come to terms this year with steadily diminishing mobility. I started the year being just about able to go for a one hour walk by myself. But as the months rolled by the distances and time that I could stay out gradually decreased to the point where I can do little more than walk around the house and even then only on one level. It often feels that the world around me is contracting as most of my time is spent indoors, a stark contrast to 2 years ago.

It would seem that once the disease has started to attack a particular area then loss of function can occur surprisingly quickly. But the disease is also unpredictable and nobody seems to be able to say where it will strike next or how quickly. Hanging over my head like a dark cloud all year has been my declining respiratory system. It took a big drop last winter which immediately started the alarm bells ringing forcing me to consider for the first time the twin options for having a PEG and NIV. All of a sudden it felt like I had turned a corner, that it was no longer just a disability, just an inconvenience to the way I lived, but instead was becoming something that would have an end date. At the time it was quite a shock but like the diagnosis itself I have steadily over time tried to come to terms with it. And so far, fingers crossed, I’ve not actually had need of either.

But despite all of the changes that are going on inside of me it is not all bad news, in fact there is still much to be grateful for. My breathing for example appears (at least to me) to be fairly stable at the moment judging from the fact that I can still get a good night’s rest and not wake up with a headache or feelings of nausea. My speech remains unaffected which is just as well as I depend on it not only to articulate my thoughts, feelings and wishes, but also to control (to some degree) my computer. Although I do have to say that the power of my voice is diminishing and I’m finding that I’m taking frequent pauses when talking to people, a sure sign of diminished lung function. But at least I’ve not yet experienced any problems swallowing so have not had to make any adjustments to my diet.

The care that I receive at home has become steadily more pervasive and time-consuming, and I have had to get used to a steady stream of unfamiliar faces coming through my door and learn to regulate the rhythms of my life to fit in with the care schedule. Slowly but surely being cared for has woven itself into the very fabric of my life. Of course I’m very grateful for it and indeed completely dependent on it but it is also increasingly difficult to find the time to do the things I want to do.

My need for equipment and adaptations to the home has been steadily growing throughout the year and if there is just one piece of advice that I could pass on to anybody reading this that has been newly diagnosed it would be ‘plan ahead’, especially if you are considering large structural changes to your house and hope to take advantage of a grant to fund it. I’m currently in the process of awaiting planning permission for an extension to the house, something which was instigated many months ago, but on hindsight it would have been much wiser to have started looking at it this time last year. But last year my legs were in a much better condition than they are now and so I was lulled into a false sense of security and caught a little off guard when they did begin to deteriorate. So the lesson to be learned is that with MND it is pretty much a given that you will lose the use of your arms and legs so it is best to be prepared for this well in advance. I should learn to take my own advice more often! Something else to appreciate is how transitory some equipment can be. As I’ve travelled through the past two years I’ve left a trail of discarded gadgets behind me as the disease slowly affects more and more of my body. I get very little use out of some of these items before paralysis and weakness consigns them to the scrapheap.

MND can present a real challenge for those wishing to carry on as normal a life as possible. There are some people in particular that I wish to thank for their tireless efforts in helping me maintain as much independence and dignity as possible. Firstly a big thank you to Marion, my OT with Adult Services who has done so much for me in acquiring equipment in a timely manner. I’m also indebted to Richard, my ever helpful Remap engineer who’s put together some wonderful little gadgets that have made such a big impact on my life. I would also like to say a big thank you to the MND Association for funding my new emergency lifeline as well as the voice recognition software which I use all the time now for this blog (in fact it would no longer be possible without it).

Because of the global nature of MND it could be all too easy to let it overwhelm you and that indeed would be a tragedy for it would waste the precious time left. Yes, in the space of two years it has completely transformed my life and at times things do indeed seem bleak. But with the right kind of care and support in place life can be made bearable. I am quite lucky in living where I am because it’s often been said that the care and support you get is a bit of a postcode lottery. Fortunately I have a very good support network that has sprung up around me without my having to ask. Surprisingly even the grant process for the extension wasn’t as traumatic as I had been led to believe from reading the stories of other people.

Remember the film Forrest Gump? There was a popular saying that went ‘life is like a box of chocolates, you never know what you’re going to get’. I’ve always liked that saying, I just never imagined that I would be lumbered with the coffee cream! smile_regular I figured out a long time ago that there would be only two ways I could approach this cruel disease: I could either let it all overwhelm me and spend each day feeling sorry for myself, or I could do what I have chosen to do which is to try and inject as much humour into my life as possible. Surely it is far better to be remembered as somebody who made other people happy? That is how I would wish to be remembered. I won’t pretend that it is easy, I’m only human after all, and there are days when it is hard to see the good in things especially when I know what is coming. The constant upheavals in my care package are not making things any easier. Thankfully I’ve so far always been able to pull myself back up, and long may it continue.

In the course of my journey I’ve met so many kind hearted and decent people; from the healthcare professionals monitoring my progress, to the carers looking after me on a daily basis. It has made a tremendous difference in how I get through each day. And on that note I would like to thank all my family for their continued help and support; to my brother Jason who continues to do my weekly shopping and help out with various little tasks that lie waiting for him each time he comes to visit; to my brother Chris who despite living at the other end of the country calls me every week for a chat; to my uncle Alan and aunt Joan who have been ferrying me around on hospital visits and generally taking care of me when I go to visit them. I’d also like to say thank you to Ann and Francesca, my ever loyal carers who have been with me throughout this year and have done so much to help lift my spirits. Thanks also go to Jim and Val, my friends from the neighbour care scheme who are my constant companions on the regular visits to see my doctor and in some cases to the hospital for tests. I’d also like to say thank you to Gavin the Gardner who’s done a wonderful job this year in keeping the outside of the house looking very presentable. In addition I would also like to say thanks to my friends who e-mail and phone me and who make me feel like I have not been forgotten. It is very much appreciated. I would also like to take the opportunity to thank all the people out there who have been kind enough to drop by and spare a few moments reading my blog, and especially those who have been kind enough to leave comments and messages of support in the guestbook. It really means a great deal to me and I hope you’ll continue to drop by for the journey ahead. I have no idea what the coming year will bring and I try not to dwell on it too much but I think I’m going to need all the help and support I can get.

And finally, talk about events conspiring against me again. I had hoped to make the most of the lovely autumnal sunny weather were having today and ask Francesca to take me out to one of the parks for a spot of fresh air and an opportunity to get some pictures of us together to mark my second anniversary. Unfortunately Francesca has not been feeling very well at all so we had to cut our time together down to the minimum as I didn’t want to see her suffer (or for me to catch anything). But before she left I did manage to get her to take at least one picture of me in my study to mark the occasion. Thank you Francesca, you’ve done your usual wonderful job! Get well soon.

Taken this morning in my study where I shall be based throughout the winter months. Peeking out from behind my shoulder is the Gooseneck microphone that I use for my blogging, and the new extended arm support can be seen in the foreground. Without these items I would now be helpless!

Mark

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High Summer (August) – part 3

Calendar entries highlighted in yellow

23rd August 2009 – A grand day out

I had a really good day out. Me and my motor neurones spent a day up in London by the River Thames. I took them down to the Embankment and bought them an ice cream each and then left them to it whilst I went off for a walk to get some peace and quiet from their constant bickering! I tell ya, one day those flippin things will be the death of me, you mark my words! 🙂

On a slightly more serious note I had a wonderful day out up in the capital in the company of my brother Jason and his wife Chery, and my friend and carer, Francesca. In the run-up to my birthday tomorrow we thought we’d start the celebrations early and make the most of the good weather. Today was going to be a real test for me as it would be the first time I had made use of public transport with my wheelchair and I was a little apprehensive, wondering what sort of problems we would encounter along the way. We got off to a good start with Basingstoke railway station well prepared for disabled travellers. No sooner had we presented our tickets when we were asked if we would require a ramp and help on to the train. Our railway station also has lifts up to the platforms which I must admit I had never noticed before so access was easy. South West trains also have doors which are clearly labelled with the familiar disabled logo. A platform attendant was on hand to attach the ramp to the carriage and to ensure that we boarded safely. Just before leaving we were asked what our destination was so that they could ring ahead to make sure that someone was on hand to help us get off the train. Inside the carriage there is an area clearly laid out for wheelchair users and some adjacent seats reserved for disabled passengers, much like a bus really. Our train was packed with people taking advantage of the Summer Madness promotion with cheap travel up to London, so I was grateful that I had my wheelchair to sit in. Unfortunately my travelling companions had to stand nearly the whole way.

Once at Waterloo we headed off towards the London Eye although not by the usual ‘disabled-unfriendly’ route with the steep stairs adjacent to the Shell building. We had to leave the station by the main exit and work our way along the footpaths. Once at County Hall there was someone on hand to help us get our tickets and give as priority access. Unfortunately priority access doesn’t mean skipping the entire queue, merely some of it as I had worked out by seeing the number of wheelchair users scattered through the queue. Boarding the capsule was made easy by attendants putting a ramp in place and pausing the wheel. With a clear blue sky we had a fantastic view across London and I thoroughly enjoyed the ride. Oh yes forgot to mention, they’ve added something since the last time I visited, a 4D London Eye Experience. Basically it’s a 3-D movie projected onto a large screen that promotes and sets the atmosphere for what is to come. Not particularly long but good fun. Just be prepared to get squirted by water!

From here we headed off to grab a bite to eat at the nearby McDonald’s. Unfortunately the entrance required navigating some steps and the only way to do this was for me to get out of the wheelchair and gingerly climb the steps with Francesca supporting my arm, all the while conscious of the people entering and leaving, and worried that I might get knocked and lose my balance (so easy these days). Once inside there was a lift for wheelchair users that took you to the below street level seating area which on a day like today was packed. With help I was able to transfer to a normal seat (no choice really as all the seats were fixed to the floor adjacent to the tables so I couldn’t squeeze in with the wheelchair even if I wanted to). I felt so weak and my arms were so tired I gratefully accepted Francesca’s offer to feed me. I just didn’t care what nearby people thought.

The London Aquarium was our next port of call. Once again we were treated with priority service and gained concession rates with Francesca being treated as my carer. The aquarium is on several levels but it’s all disabled-friendly with lifts for easy access. Highlight of course must be the multilevel shark tank which you can view from different viewpoints as you move around the floors. At certain times you can see divers going into the tank to feed the sharks. Interestingly it never seems to be the same diver twice which perhaps explains the notice I saw by the admissions desk ‘divers wanted urgently, start immediately’. All I’m saying is the sharks look very healthy 🙂

Hard to believe but already the time was flying by (as it always seems to do when I’m in London). With the sun casting an early evening golden light across the Thames we took a cruise up to Tower Bridge. I would have liked to have taken the extended trip to Greenwich but time was pressing. Boarding the riverboat was less refined than boarding the train i.e. a couple of burly deckhands literally grabbed hold of the wheelchair and lifted it and me on to the boat! Even so we had to let the first boat go as the height of the boat’s deck was not level with the floating dock (by a considerable margin) and was deemed too unsafe to board. What they also failed to tell us was that the boat we were on would be taken out of service for the evening once it arrived at Tower Bridge and that we would need to wait for almost an hour for a return cruise. Still, it gave us a chance to walk over to the Tower of London and get a closer view of Tower Bridge. The return cruise docked on the north bank which meant having to get out of the wheelchair again and climbing the steep stairs up to Westminster Bridge. I was grateful to have Francesca and Chery at my side offering reassurance I was glad when I had reached the top and able to sit back in my wheelchair again.

It had been a really enjoyable day out even though it often felt like somebody had pressed the fast forward button and hours were passing like minutes (we never achieved everything we set out to do). As with my day out at Beaulieu the lesson to be learned I think is the more people who come with you the merrier. Having a few extra pairs of hands spread the workload, particularly when it came to pushing me. I’d like to thank everybody who came and made it such a wonderful day and for taking such good care of me, in particular to Francesca who conquered her fear of heights (at least enough to board the wheel with us) and rocking boats, and kept an extra careful eye on me. By the time I arrived home I was feeling very low on energy and because I had sat in a wheelchair all day my legs felt especially weak, so with my brother on hand to make sure I didn’t run into any difficulties I went straight to bed, grateful for the rest. The only disappointment of today? That Francesca had not lived up to her promise of giving me a piggyback around London or wearing me like Jar Jar Binks backpack! 🙂

Here’s a few shots to begin with. I’ll upload a separate gallery shortly.

My brother Jason on the London Eye.

With Francesca on the London Eye.

My brother and his wife Chery on the London Eye.

Francesca and I by the London Eye

With my brother Jason at the London Eye

Brothers! At the London Eye

Chery and I waiting for our Thames cruise. (photo courtesy of Chery)

With Francesca looking towards Tower Bridge.

Oh yes, one last thing or perhaps I should say first thing. Francesca had been extra busy this morning when she arrived to do my care but I wasn’t to find out until I had been washed, dressed and brought downstairs. The dining area had been decked out with balloons and a birthday boy banner… and some presents to open tomorrow. What a nice gesture. I’m so lucky to have such a friend and carer.

24th August 2009 – It’s my birthday!

I’m 49 today! After breakfast Ann and I had a card and present opening session. Well that is to say I sat patiently in my swivel chair whilst Ann opened the cards and held them up for me to read. Thank you to everyone who sent one and also thanks to all of you folks who sent me electronic greetings – a pleasant surprise when switching on my computer this morning. Oh, and a special thank you to Francesca who sent me a hilarious animated e-card, a sample of which you can see below.

A frame grab from the animated eCard that Francesca sent me

I phoned up Liftech this morning to chase up my stair lift as it has been a good two months since the order was placed and at the time I was given a 4 to 6 week delivery quote. I’ve been told that they are still waiting on Holland (where they are manufactured) and that are going to chase them up again. With my legs growing ever weaker I’m really starting to become concerned about my ability to use the stairs for much longer and it’s starting to feel like a race against time. I did explain my situation to them in the hope that it might help expedite things.

By strange coincidence I received a phone call this morning from an electrician working for Liftech who was in the area. ‘Would it be okay if I call round right now and wire up the spur in readiness for when the stairlift arrives?’ He asked. Absolutely, I said, glad that things were starting to move along at last. Within the hour he had arrived, been up into the loft and run a power lead through the ceiling along the edge of the door frame, and fixed a spur by the skirting board. Smashing, now all we need is the stairlift!

To celebrate my birthday we had a meal out at the Longbridge Mill where my closest family and friends gathered for the evening. It was so lovely to see everyone having an enjoyable time together and for once not having to eat by myself. I’d like to thank everybody who came along and made the evening such a joy. I hope you all enjoyed it as much as I did. Special thanks to Francesca for helping feed me and to Chery for supplying the delicious birthday cake. Not any cake mind you, an M&S cake!

Here’s a few shots from the happy evening. More to come.

Here she is at last…captured on film! It’s Ann, my lovely, friendly and devoted carer.

With my two lovely, devoted carers…and good friends!

With my two lovely, devoted carers…and good friends!

With the lovely Francesca!

With my Aunt Joan & Uncle Alan and Cousin Suzanne.

 25th August 2009 – Care package review

I had a meeting with Rachel, my social care manager, to discuss the latest situation with my care package. Over the past few months a few issues had surfaced that were causing concern and needed action. The most pressing was the inconsistency and variability of the evening calls that had sprung up. The agency were struggling to find suitable carers, or indeed carers with sufficient availability, and this coupled with hardly ever receiving a weekly care plan any more meant that I often had no idea who would turn up at my door or even when. Something that Rachel had proposed a little while ago was moving to a dual agency and it was supposed to be one of the topics of conversation for today. I was therefore a little surprised to be told that things have moved on a little since then and that the agency were basically saying that they could no longer provide consistency for the evening calls for the foreseeable future and that they were terminating that part of their contract which apparently they could do. However, after a conversation with them on the phone this afternoon they seem to have backpedalled a little bit on that and I’m now going to have a meeting with the Home Care manager later this week to discuss possible suitable carers and their availability. What this might mean unfortunately is an increased amount of carers which moves away from what I originally had wanted. If however we cannot find a solution I will be forced into dealing with two care agencies which is going to get even more complicated.

Another long-term gripe I have with the agency which I have highlighted on numerous occasions is the fact that my care plan is woefully out of date. It was written out when I first needed care back in October last year and has never been reviewed since. With a progressive disease like MND it should be reviewed and where necessary adjusted on a much more regular basis, say every three months, instead of the usual 12 monthly cycle which is fine if your disability or needs are static. My needs have changed considerably; for instance the care plan makes no mention whatsoever of all the personal care I now require each morning. Consequently whenever a new carer arrives at the house and looks in the care plan folder I feel obliged to apologise and tell them not to go by that and so I end up having to explain everything.

27th August 2009 – A meeting with the Home Care manager

Debbie, the Home Care manager for the care agency I’m with called round this afternoon primarily to rewrite the care plan but also to talk about available carers for my evenings. As I’ve previously mentioned my care plan bears little resemblance to the stage that I’m currently at so we sat down together and totally rewrote it. I went through it step-by-step explaining everything that happens from the moment the carer arrives in the morning through to leaving in the evening and breaking the tasks down into the three main calls. The document is going to be stored on their computer system with a three monthly review day as I requested. They are going to supply me with an electronic copy so that if anything changes I can review it against the document and notify the care agency to issue an updated care plan. We also talked at some length about the problems I’m facing with my evening calls. Debbie is going to go away and discuss with some of the carers I’ve highlighted what availability is and what they are prepared to commit to to ensure that I have consistency.

28th August 2009 – Seating trials / Editing with ease

Ann and I have been experimenting this morning with the perching stool I’ve had gathering dust in the main bedroom. This was something that Chris, one of my OT’s had brought round in the early days after the diagnosis, and which at the time I felt was premature as my legs showed no symptoms. I’d never been very keen on it and viewed it as a very basic model with its tubular metal armrests and back support offering no comfort. Now with my legs progressively weakening I’m having to look at all options to enable me to continue living as normally as possible. In recent months we’ve been using an old wooden chair for me to sit on in the bathroom whilst having my shave. However the seat height is only 17 inches and just recently I’ve started to need help standing up from it. The perching stool (which is height adjustable) raises the seat height a further 6 inches and makes it so much easier for me to stand up by myself. To overcome the tubular metal back support digging into my back we’ve wrapped a towel around it. So for now, problem solved. Something else were going to be looking at after discussion with my OT is getting another glideabout chair similar to the one I have in the dining room but with a higher seat height. The one I already have has a 20 inch seat height but apparently you can get 23 inch models to. The intention is to keep one upstairs as apparently it is the preferred choice for first floors when space doesn’t permit a wheelchair.

I must say that the foot mouse and switches I recently received from AbilityNet have made a world of difference to my ability to edit digital photos. It is so much easier now to use my left foot to activate one of the switches (which simulates the left mouse button) whilst using the fingers of my right hand to move across the trackpad. Thus I am now able to perform cropping actions with ease. For the last few days I’ve been busy preparing photos taken over my birthday ready for my blog. Without these new tools I would have struggled really badly. Thank goodness that there is technology out there that enables us to continue to do the things that we enjoy for a little longer.

Mark

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First anniversary

One year after being diagnosed with Motor Neurone Disease

Life never turns out the way we expect and none of us know what lies lurking around the corner as we travel the road of life, whether it be good fortune or something that will turn our world upside down and for the worse.

A year ago today a little after 5pm I was sitting in a consultation room at the Basingstoke & North Hants hospital listening to the worst news of my life, half in shock and half disbelieving that this could be happening to me. Wondering what sort of future I would have and even whether I would be here in a year’s time. I remember driving home alone that cold dark evening with tears running down my face wondering how I could break the news to my family and friends. Terrible, terrible day.

Although not really superstitious the number 7 is not considered to be particularly lucky in our family. I was 47 when I was diagnosed . The year was 2007. I was diagnosed on November 7. My appointment was 17:00hrs. Knowing all this perhaps I should have rescheduled the appointment! Oh, and to continue the theme this blog entry is my 27th! Spooky!

So here we are a year on from that terrible evening and I feel a tremendous sense of relief that I’ve made it this far and amazed too that the time has passed so quickly. In the time since I’ve learnt quite a lot about the disease through talking to people and reading other sufferers stories and I’ve discovered how variable its progression can be. I’ve learnt that in its most aggressive forms it is possible to loose the fight within six months, so I thank my lucky stars that I I’m still here. I’ve also read about other folk diagnosed around the same time as me who have unfortunately fared less well and again I give thanks that I don’t have it that bad. But nevertheless its impact on me both in terms of lifestyle and physical abilities has been significant. At the time of being diagnosed I was for the most part leading a fairly normal life but in the space of those twelve months I have had to give up work, driving, cycling, gardening, DIY, and housework. Whilst the following activities have become difficult to varying degrees: dressing, washing and self grooming, cooking, laundry, hand writing, photography, reading books and magazines, and high street shopping.

When we are young and healthy and full of the confidence of youth we all like to think where invincible and that bad things only happen to other people. Life has a way of proving us wrong of course. So here I am on a journey I never expected to take, sat in front of my PC struggling to get my hands and fingers to work well enough to type this blog entry. My shoulders and neck muscles ache and even my breathing muscles don’t feel as effective as they used to do and breathing after physical exertion impinges more on my consciousness. My legs are visibly getting thinner and I sometimes wonder if the coming year will be the last I will see the world from eye level. Yes, life is difficult and a little frightening these days. I’m starting to have tremendous respect for my fellow sufferers who have lived with this for a few years or more. Having it one year is bad enough. I keep listening out for the bedside alarm clock to go off. Hoping that any minute I’ll wake up and think “I’ve just had the most awful nightmare…”

By the way, anyone who thinks that these blog entries, which can be quite wordy, are typed up in a single session are under the wrong impression. I only mention that because I didn’t want people to think that I was typing away at normal speed after saying how difficult it was to use my hands. These recent blog entries are spread over a number of days because my hands tire easily.

But it is not all doom and gloom. In fact there is much to be grateful for: I’m still mobile and have full use of my legs so can get about and go for walks although I tire more easily these days. Apart from visible signs of wasting I’ve not yet started to suffer from drop foot or tripping over myself; I’m not on ventilation and can still get a good night’s sleep; I’ve not lost the ability to speak and my tongue has shown no signs of wasting so communicating my needs is easy; My throat muscles have not weakened and so swallowing food is still normal and indeed I can still enjoy normal food and currently have no restrictions on my diet. I think when you have a progressive and highly destructive disease like MND you really do need to try to find ways to see the good in everything otherwise there is a danger of being overwhelmed by it all. And as I’ve said to my friends before I do not want to look back right at the end with regret at how I let the disease ruin every day between now and then so I try to make the most of the time available to me.

It’s often been said that we should not dwell on the past and that we should look to the future. Sure, learn from the past but use it only to make a better tomorrow. Trouble is when you have something like MND the future is the last place you want to go. People sometimes say to me that I look okay which is always nice to hear, after all nobody wants to be told they look a wreck! But eyes can deceive. I may look indistinguishable to most other folk from a cursory glance if I was sitting down or just standing up chatting but as soon as I start to try and do something using my upper limbs then it quickly becomes apparent that something is not right.

We humans are very good at adapting to change, and just as my brain constantly tries to find a way to get the signals through, I continue to try to find ways to maintain a level of independence. But I must admit that at times I am so tired at constantly trying to come up with different ways of doing things. I just wish it would slow down and let me catch my breath. It’s not always easy to find alternative ways to do things. It’s been a little bit worse in recent months as my energy reserves are fading away and I have to make a more conscious effort about how I spend my energy each day. I’m starting to slow down.

If everything had gone to plan then I would have opened this blog entry with the words “Today I celebrate my Independence Day” :-D. But of course things never go to plan with this disease and like a racehorse I’ve fallen at the last hurdle – again! I set myself all these targets and hardly ever meet them. MND is a very unpredictable disease. It had been my intention to try and remain independent for a whole year but as I’ve already mentioned in a previous blog article, that was becoming impossible. The price of that independence was starting to climb and my quality of life falling rapidly. I am now no longer fully independent and for the past few weeks have started to make the transition to living with care at home. Technically I lost my full independence right back at the beginning of the year when I lost the ability to do my own grocery shopping. I’ll write about my experiences of adjusting to life with carers in a future blog article.

My life has certainly changed a great deal though and as the months go by they are starting to fill with an ever increasing number of appointments. I only have to take a look at my online calendar these days to see how many days throughout the month have health related bookings of one sort or another. I seem to spend half my time either waiting for people to call or just sitting in waiting rooms awaiting my turn. But I would rather have it like that then feel abandoned. This is not a disease you want to be alone with. I feel quite lucky that I have a good network of health care professionals springing up around me. Just as well really because MND is a very high dependence disease that requires a multi-disciplinary approach.

I guess every person forced to make a journey such as this will find their own way to deal with it. For me it’s being able to laugh at myself or with my friends and to not take life too seriously because life is short at the best of times. In fact I believe that laughter and the ability to keep on smiling is the best of all medicines. And it doesn’t even need a clinical trial! Neither does it need MHRA or FDA approval. It’s freely available. There are no negative side effects. And it’s infectious too: if I smile at you I bet you’ll smile right back! 🙂 See, told you so :-D.

Me, today - the anniversary boy! Still smiling along, singing a song…

Another way I deal with it is by keeping my mind constantly engaged in work of one kind or another – even if I have to create it. Fortunately though I have plenty of hobbies and interests and although some of them are proving challenging these days I have so far been able to find workarounds in most cases so that I can at least enjoy them to some degree. Anything but sit and brood and worry about tomorrow. I tend to take things one day at a time as much as possible and prefer to live in the here and now. Tomorrow will come soon enough. And as they say “Que sera sera”!

One thing I will say about the last year and that is I’ve met so many good, kind hearted and decent people; from the health care professionals keeping an eye on me, to the volunteers who come to visit me, and most recently to the carers looking after me on a daily basis. It has made a big difference in how I come to terms with the disease and get through each day. So surround yourself with good people, that’s my advice! And on that note I’d like to thank all my family for all the support and help they’ve given me this past year: to my brother Jason and his wife Chery who have been getting my shopping every week without fail and for all the little jobs that lie waiting in ambush each time they call round; to my brother Chris who although living at the other end of the country phones me every week for a chat; to my Uncle Alan & Aunt Joan who always make me feel welcome and generally look after me when I call round for our monthly coffee mornings/lunches. I’d also like to thank all my friends who call to either chat or take me out, and most recently to Ted and Carry for the lovely lunchtime meals and enjoyable chats, and to all those who email and phone me and to just make me feel like I’ve not been forgotten. Thanks to you all. I’d also like to take this opportunity to thank all the people out there who have been kind enough to spare a few moments to visit my blog and for all the lovely messages of support. It really means a lot to me. I hope you’ll stay for the journey ahead. I think I’m going to need all the help and support I can get in the coming year. But hopefully the disease won’t progress too quickly and will let me stay around for a while (he says with fingers crossed) – I’m not ready to pop my clogs just yet!

Yesterday I received some very good news indeed from my local hospice who called to tell me that the funding application that they and a team of health care professionals had been working on to enable me to have continuing care had been reviewed and accepted by the NHS. What this means is that the cost of my care at home package which I am currently paying for will now be met by the NHS. What a nice way to end my first year. It would have been quite a worry in the long term as the costs start to escalate and with no salary coming in not possible to maintain indefinitely. My anniversary present from the NHS!

And now it’s time to celebrate :-D. In fact I started a while back by taking a trip down memory lane and revisiting all the old cakes I used to eat as a boy. Week by week I’m working my way through Mr Kipling’s inventory: battenburg, fondant fancies, angel cake, Madeira, bakewell slices, jam tarts, Victoria sponge. Okay so not all of them are Mr Kipling cakes but they sure do taste nice and I’d forgotten how most of them tasted, hehe. One thing’s for sure those pesky motor neurones aren’t invited to my party after all the grief they’ve caused me :evil:. In fact they’re not even on my Christmas card list this year. Serve them right!

I’ve been writing this blog whilst listening to a Vanessa Mae CD. Sadly I cannot even play my air violin these days, haha. Guess I’ll have to sell it on ebay as I don’t get the use out of it any more :-D.

To celebrate I’ll be spending some time with family and having a nice evening meal although unfortunately family commitments mean that it won’t be until next week. Something to look forward to.

And finally…let’s close out with a few photos from a real highpoint in the year – my brother Jason’s wedding back in February to the lovely Chery, who is not only my sister-in-law but a dear friend. A very happy day indeed! All the photos below were taken by Stuart Holding of Ashley Photographic. Click on any photo to open a larger copy.

Sheila, Emma, Rowan, Chris & Jason

Three lovely ladies. Chery and her two sisters (Shella & Glendale)

That’s it brother, lean on my weak shoulder 😀

Signing the register

The happy couple

My favourite shot from the day. This one sums it up beautifully

Happy faces all round

A very rare shot of me with both my brothers – Chris and Jason

My second favourite shot from the day

At the wedding breakfast

 

Mark

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