Sunday, November 28th 2010

A stressful week

I’m just starting to recover from what has been a very stressful week for me. It has been one which has seen both my appetite and energy levels plummet to a record low, and my stress levels go through the roof thanks to my computer which developed a major fault. Let me explain…

Healthwise I was already off to a bad start at the beginning of the week when my variable appetite decided to take a nosedive. Try as I might I just couldn’t work up any enthusiasm to tackle eating which has steadily become an increasingly time and energy intensive task. It would begin in the morning when I woke up. Instead of feeling hungry and looking forward to breakfast I was starting to look at it as something that needed to be got out of the way as quickly and efficiently as possible. This is a far cry from even just a month ago when I would look forward to a delicious cooked English breakfast that I would have little problem eating. Now I was struggling to get through a bowl of cereals or a very small cooked breakfast. In fact on a number of occasions I was having to give up half way through as I just didn’t have the energy to continue.

Tiredness also plagued me and I felt that I wasn’t fully awake until halfway through the morning. At the other end of the day it was very much the same story as I would often feel ready for sleep well before my bedtime. The only consolation to all this was that I slept soundly.

What I didn’t need on top of all of this was for my computer to start acting up again. Unfortunately this is exactly what happened last Wednesday night when the screen suddenly froze and the whole computer stopped responding. Fortunately Suja, one of my carers, was with me at the time so was able to reboot the computer for me. But I groaned in disbelief as green vertical bands followed by dots appeared all over the screen as it attempted to load Windows – and failed. It was the same issue that had brought my computer to its knees the first time I was at St Michaels Hospice back in the summer so I knew straightaway that it was going to be expensive to repair.

Without the computer I couldn’t even go online and order a new one, nor could I search for a local repair company or access the details of the previous repair. And being trapped upstairs meant that I was also unable to ask one of my carers to go out shopping with me for one. I felt helpless and frustrated. I depend on the computer for so much. Ironically I was planning to order a new laptop  soon which was going to be my primary computer and then relegate my current one to being the backup in case anything happened. Unfortunately circumstances overtook me and I went to bed that night feeling rather low. It was bad enough being locked out of my body without also being locked out of my computer.

The next morning (Thursday) we tried contacting the company responsible for repairing the laptop to find out if their work carried a warranty. The answer was yes it did but apparently it expired in the middle of October. So at that rate it looks like three months or 90 days is all you get. Why do things always fail just outside warranty? The last repair cost me almost £150 and took a week to turn around. I certainly didn’t fancy spending that kind of money again if all I was going to get out of it was about four months, nor could I afford to sit around twiddling my thumbs for a week. The only option I had at this stage was to buy another computer and worry about the other one later. My brother Jason had been kind enough to spend some time Wednesday night searching online for something suitable and ideally close to home. As luck would have it he was able to identify something on special offer at my local retail park. Debbie very kindly rushed out and got it for me during my morning call. At times like this I am really grateful that we have facilities like this so close by, and also people to get them for me.

Halfway through that morning I had a call from Peter, one of the assessors with AbilityNet. He’d actually called to demonstrate a piece of equipment but because my computer wasn’t working and I was not feeling very well, we put that on hold. Instead he very kindly offered to help me rescue all of my data which thankfully we managed to achieve by starting the computer in safe mode. I breathed a big sigh of relief once everything was securely backed up.

During the evening and with a lot of assistance from Suja we unpacked the new computer, got it set up and connected to the network. Over the course of the next three days and with the help of various people I was able to get the system sufficiently customised so that it could be used ‘hands-free’. The big problem we had was in getting the speech recognition software to work. I’ve set this up on two machines now and not had a problem before but this time it just didn’t seem to want to work with my gooseneck microphone. That particular problem cost me a whole day and in the end was resolved by my brother whilst I lay in bed exhausted.

So here we are at the end of the week and I’m finally back online again. I still have a lot of work ahead of me in getting this new system set up but at least I have a working computer again so can communicate with everyone. Before signing off would like to express my gratitude to everyone who helped out in this ‘crisis’: to my brother Jason for sourcing a computer and sorting out the technical issues, Debbie for ‘shopping duties’, Peter for rescuing my data, and Suja for help with all the setup and installations.

Mark

Bookmark and Share

Sunday, November 21st 2010

End of the week roundup

We’re coming up to 3 weeks now since I arrived home from the hospice. In that time I’ve settled back into a regular routine, and although I am now being cared for by a new agency, I am for the most part still being cared for by people I’ve known for quite a while. And I’m grateful for this too as it gives me the stability and continuity that I need. We’re in the process of introducing some new faces as well and this will help spread the load and buffer against unforeseen events. Earlier this week my care manager called round and we had our first care package review. It was a big relief to be able to honestly say that there had been no problems during the first couple of weeks. All the calls were getting covered correctly and everyone had a willingness to cover for each other and a determination to ensure that it didn’t fail. Okay, it is only a fortnight but nevertheless it is encouraging. Having a core team of familiar faces with a proven track record has been a big plus and as long as we don’t have any major ‘unforeseen events’ then there is no reason to expect things to change dramatically.

Apart from that the only other visit of note I’ve had recently has been on Friday afternoon when my OT and the folks from Liftech called round to take a look at the extension and to finalise details for the X-Y axis ceiling hoist. I’m being told that as things stand we’re looking at about two weeks to get it fitted.

My appetite has been a bit up and down like a rollercoaster lately and on a number of occasions I’ve had to fall back on high calorie drinks to ensure I get enough nutrition. I’ve also continued to feel very sleepy when I wake up in the morning and tired and ready for bed halfway through the evening. Lately I’ve been feeling I could sleep my life away…

Because of my general tiredness I’ve not achieved a great deal recently. Writing has taken a backseat as I try to catch up with some much-needed reading so the blog is taking a lower priority than usual as I really do want to get on and do some other things, and unfortunately everything takes so long these days. I really miss the use of my arms!

One piece of news that did catch my eye this week was hearing that her Majesty the Queen has just formally opened The Sheffield Institute for Translational Neuroscience (SITraN). This state-of-the-art research centre dedicated to finding a cure for motor neurone disease is believed to be the first of its kind in Europe. How times are changing. Go back 20 years or so and very little was being done to unravel the mysteries of this insidious disease. And now here we are with an actual research centre here in the UK that will bring together scientists and medical specialists from around the world to work together on the problem. For people in my position this is like an early Christmas present, a glimmer of hope that before too long we will be able to flip over a few more of the jigsaw pieces that will give us the big picture. Okay, I’m not exactly expecting this to be a white knight for myself, but knowing now what this disease does to a person I can only hope that something can be done before too long to at least significantly slow it down so that others are spared the horror of having their life dismantled. You can view a short video courtesy of the BBC here or read a press release from Sheffield University’s own website here.

I’ll close out with another batch of photos that Debbie has kindly taken over the past week of the work going on in my new extension. As you can see the plasterer has been in and the ceiling has been boarded up so it is starting to come together. There’s been a lot of dust flying around lately and my carers have been kept busy constantly sweeping up and trying to keep the place dust free. We’re actually further ahead than these pictures suggest as towards the end of the week the walls were painted which has made a big difference. Apparently it’s a lot brighter too. I’ll post some more pictures soon. In the meantime you have these to enjoy and as you can see my fury little friend has been skittering around the place too!

My inquisitive little friend up to mischief again 🙂

Playing hide and seek!

Bedroom walls in the process of being plastered. 13th November 2010

Bedroom wall alcove. 13th November 2010

Bedroom ceiling now in place. 13th November 2010

View towards bathroom and electrics for hoist. 14th November 2010

Bedroom walls awaiting plastering. 14th November 2010

Bathroom taking shape. 14th November 2010

Bedroom walls plastered. 16th November 2010

Bedroom wall and alcove now plastered. 16th November 2010

Mark

Bookmark and Share

Sunday, November 14th 2010

Breakthrough!

After more than a month’s absence from the blog I finally have some new photos to share with you of the progress being made on the downstairs extension to my house. Actually, as you will see for yourselves, these pictures were taken last week but I have only just got around to running them through a photo editor to perform the usual tweaks i.e. sharpness, brightness, cropping/sizing and adding a border. I do actually have some more pictures that were taken this week showing progress beyond this stage but I have yet to post process them so they will have to be the subject of another blog post.

But for now here is a glimpse of the work underway on the inside of the extension now that the builders have broken through. Most of what you see here has actually occurred after I arrived home, which sort of suggests that things were progressing rather slowly during the month I was away. In fact even most of the knock through took place only recently. Nevertheless it is good to see it gradually changing into something suitable for living in. I’m still being told that completion is scheduled for the end of November, but that is only two weeks away, and looking at where we are now there is still much to do.

My thanks as always go to Debbie for taking the photos, because without them even I would only have other people’s descriptions and the noise coming from downstairs to tell me what was going on.

View from living room into extension with knock through in progress. 4th November 2010

New bedroom under construction. 4th November 2010

Entrance into new bathroom. 4th November 2010

Completed exterior front elevation. 4th November 2010

Loft insulation and bedroom ceiling in progress. 6th November 2010

Front elevation of completed exterior. 6th November 2010

Rear elevation of completed exterior. 6th November 2010

Mark

Bookmark and Share

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

Bookmark and Share

Monday, November 1st 2010

Homecoming

After a month spent at St Michaels Hospice whilst alternative care arrangements were being made I have finally been discharged and returned home this afternoon. I can say with tremendous relief that all the problems relating to why I ended up in the hospice so soon after my first visit have now been resolved. A few weeks ago I was being faced with a rather difficult choice; either accept a live-in carer or face going into a care home. Neither option appealed to me, and for a while I was feeling quite down about the whole situation. I felt I had been let down by the very people who were supposed to be looking after me and yet had failed to act in a proactive manner, thus landing me in this situation. Fortunately one of my carers, who had left the agency that were supporting me, had moved to an agency that were expanding into domiciliary care. This new agency offered to take on my care package and run it in pretty much the same fashion as it was prior to all the problems starting. I have to say that I was overjoyed at hearing this news, even more so when all the legalities had been finalised and we were given a green light, because up until this offer came along having a new day care package wasn’t even on the table. The icing on the cake is that several of my regular carers have also transitioned to the new care agency as they tell me that they still wish to care for me. It’s a rather humbling feeling to know that people are prepared to change employers just for my benefit. Thank goodness that people like Ann, Debbie and Vanessa realise the importance of continuity in a palliative care package.

So back to today and my last delicious cooked breakfast before venturing out with Vanessa for the last time before being trapped upstairs once more (hopefully for no more than a month). For a change we headed over to the Ark Conference Centre which is in the grounds of Basingstoke and North Hampshire hospital, itself only a stone’s throw from the hospice. Regular readers may recall that I attended and indeed participated in a special one-day MND conference at the Ark earlier this year. Today’s only purpose though was to sit and relax over a coffee in their restaurant whilst gazing out the large floor-to-ceiling window. On the way back we stopped off in one of the hospital’s courtyard gardens where I sat listening to the sound of running water trickling down a stone fountain into a pond. Heading back to the hospice I took one last glance at the beautiful autumn colours on the nearby trees, and wondered to myself when would be the next time I will be out in the fresh air?

Those lovely folk from the southern country ambulance service collected me from the hospice during the first half of the afternoon, and after a brief farewell I was on my way home. Fortunately because it is a privately owned company I was once again able to travel sitting in my wheelchair rather than on my back on a stretcher bed. Even so I have to say that because of the weakness in my body these days I really do feel every bump in the road and struggle hard to keep myself up right when going round corners.

I arrived home to find a freezing cold house. The boiler had been switched off, probably when the builders were laying copper pipes into the extension. However even after we got it fired up the living room remained freezing cold due to the large hole leading into the extension that had not been covered up. Consequently any heat soon escaped into the extension and its loft space. Things weren’t so bad for me upstairs as I was able to close the door to my study and bedrooms but the rest of the house wasn’t a particularly comfortable place to be for my carers.

We hit one other problem at bedtime. The battery on the Possum environmental control system had gone completely flat and was refusing to hold a charge. This is the system I normally transfer from my study into the bedroom at night and gives me a degree of security in the knowledge that I can use the hands-free phone in an emergency, or indeed alter the profile on the bed if I become uncomfortable. Normally the system runs on battery throughout the night and mains during the day. The way things are configured at the moment it’s not the easiest thing to get at the mains plugs in the study so it was with a bit of concern that I had to get through the night without this system.

So there we are. I’m back home and about to start the next chapter in my care saga. Fingers crossed that I have more luck this time fingerscrossed.

Before I go I would like to say a huge thank you to all the staff and volunteers at St Michaels Hospice who did such a wonderful job of caring for me. I can never praise these people high enough and I’m going to really miss them. I would also like to thank Vanessa for all the hard work she’s done today, Debbie for doing a lot of running around on my behalf this afternoon and generally making things ‘happen’, and Suja (who I am also pleased to say has chosen to remain involved in my care) for getting my computer setup and running this evening. Thanks girls!

Mark

Bookmark and Share