Sunday, June 27th 2010

Off to hospital!

Both Alli and Ann were on hand this morning to help get me up – my second experience of double-ups! Curious to see if yesterday was just a one-off and determined to not lose my confidence in trying, Alli assisted me to stand from the edge of the bed. At least I was able to weight bear although my legs still didn’t feel particularly strong. After a few tentative steps I gingerly made my way to the bathroom. I made it safely but it was clear to me that my days of not being able to walk were fast approaching. Getting dressed a bit later proved difficult as my legs were already struggling to hold me up and it was becoming obvious to me that trying to stand up for much longer was too risky. So they had to put me in the glide about chair and wheel me into the study and from there perform the difficult manoeuvre of getting me into my office chair. All this handling of me, even with the two carers, was highlighting how deficient we were in all the necessary equipment. Frustratingly there was a mobile hoist in my study that had been brought in months ago especially for situations like this but it was not working. We were still waiting for an engineer to repair it despite being notified weeks ago.

Handing me now with very little contribution from myself was becoming dangerous both to myself and my carers, so it was no surprise to be told today that my care agency could no longer support me in my own home until the right equipment and resources were in place. There were no carers available to help with double-ups for this evening so the only options I was being given were to be taken into the hospital or hospice whilst everything was being sorted out. Neither option appealed because I couldn’t bear the thought of lying around all day doing nothing when time these days is so precious to me. In fact with terminal illnesses ‘waste anything but time’. I felt so frustrated. How could it have come to this when I had given everyone around me so many advanced warnings about my weakening legs precisely so we didn’t reach crisis point? Reluctantly I chose to go to the hospice but then found out that there were no beds available so would have to be admitted to the hospital’s Medical Assessment Unit. So, late this afternoon an ambulance arrived and two very friendly paramedics (Elaine and Paul) took me up to the hospital. But this turned out to be no easy matter as they had terrible trouble just getting me on and off the stairlift. After trying all sorts of ideas we eventually made it downstairs, placed into my wheelchair and taken outside where I was transferred to a stretcher. On the journey to the hospital I had my blood pressure and a sample of blood taken.

I almost did a double-take when they first wheeled me into the room I would be staying in; there was a nurse who was an almost 100% dead ringer for Francesca, in fact at first I thought it was her! On top of that the doctor who gave me further blood tests (checking for infections) and an ECG, had exactly the same name as my brother. Spooky (cue Twilight Zone music)! smile_regular

Still, getting settled into a hospital bed this time proved a lot easier than it did last September when I was waiting around in A&E for hours before seeing anyone. However, unlike last time when I had a room to myself, I found that I would be sharing a six-bed room with a group of elderly gentleman who made getting to sleep, shall we say ‘challenging’. In between the guy in the opposite bed, who could barely string two words together, crying out ‘I’m wet’ every few hours, and the guy in the next bed to me redefining what it means to snore, there was an endless procession of elderly gents shuffling past my bed with shaky hands on Zimmer frames on their way to the toilet. I felt like a spectator in a crowd watching a procession of chariots and their riders in Ben Hur smile_regular. I had a feeling it was going to be one of those nights!


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Sunday, February 7th 2010


I’ve been experiencing some first signs of problems with my swallow reflex. I first noticed it early this week when I was having my evening meal. Food was building up at the back of my throat instead of sliding down and it was taking a real conscious effort to shift it. In fact it got to the point where I was taking a sip of water after every mouthful of food just to ensure that the food slid down my throat. With my weakened respiratory system I couldn’t take the chance that the food would block my airways as I don’t have enough lung function to effectively cough up the food. It became quite an effort to plough through the meal and in fact I ended up abandoning it about halfway through. A real pity because it was a delicious chicken breast, crispy roast potatoes, vegetables and gravy. Ordinarily I would devour something like that in no time. The problem has persisted to varying degrees throughout the week although it seems to be worse in the evening, presumably because by this time the muscles are getting tired. I’ve had cooked breakfasts some mornings this week and despite eating such things as fried bread, fried egg and crispy bacon, I have not encountered any problems. Certain types of foods, textures or perhaps just times of the day are causing me problems. All of this comes as a bit of a surprise as until now I’ve never had a single problem swallowing although of course as I’ve previously mentioned I have been battling with a reduced appetite for some time, but it never actually affected my ability to swallow food. I’m going to have to start taking a careful look at what I eat.

Standing up

At the start of last month I was doubtful if I would even make it through to the end of the month on my feet. Well I did and am still doing so albeit in a rather wobbly and uncertain kind of way. The problem is actually in the standing up. For weeks now I’ve had to make a concerted effort whenever I want to stand up either from the bed, a chair, or the toilet. In the process of trying to stand there is always that moment of uncertainty; will I make it, will I fall backwards, or will I fall forward onto the floor? Well, fingers crossed I’ve not yet fallen forwards but I have on several occasions now fallen back and not been able to stand up. Over the past week I have increasingly needed to depend on my carers to help haul me up either from my study chair or the toilet until it has got to the point where I am now virtually unable to do it unassisted. Once I am in a standing position I am okay for a few minutes as I still have some load-bearing ability in my legs. But those upper leg muscles just don’t have enough strength in them anymore to lift my weight. Consequently independent mobility is now seriously under threat and just about the only times I can move around are when there is somebody here to assist.

Lost grip

Despite the physiotherapy my hands are becoming harder to clench. The passive movements that are performed on my fingers help keep the muscle tissue supple but the problem of course is that the signals to instruct the muscles to move just aren’t getting through. A couple of weeks ago I started experiencing problems even trying to hold onto toilet tissue long enough to actually use it! As the days went by my fingers became ever more sluggish to respond until it got to the point earlier this week when I simply had to accept the fact that even wiping my own backside was no longer possible. So once again MND has stripped away part of my dignity as I’ve now had to embarrassingly hand this task over to my carers who of course just see it as a routine part of their everyday work lives. Just between you and me I really hate this disease.

* * *

The disease is becoming far more global in its nature and I feel like I’m being attacked on multiple fronts as the various muscular systems in the body start to crash. In one week I’ve seen the first signs of problems with actually eating food, seeing my mobility reduced down even further, and having to give up that most personal of hygiene. No wonder I’ve been feeling a bit down this week. Just as well then that with all the things that are happening to me just lately that I’m now on the extended care package. Having someone else in the house for most of my waking hours is very reassuring now that I am at this stage of the disease.


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Heading for Autumn (September) – part 3

Calendar entries highlighted in yellow

14th September 2009 – Training day

Karen from AbilityNet phoned this afternoon to begin my remote access training for the speech recognition software they recently supplied me with. As part of the support package I am entitled to 6 one-hour lessons. I had the choice of either having somebody call at my house to deliver the training or to do it over the phone with my computer logged into their system so they could watch what I was doing. I chose the remote training partly because I was being told that it would take longer to arrange for somebody to come out to the house and I was keen to make a start as soon as possible. I’ve actually been playing around with the software on my own for some weeks now so have managed to work out some of the basics by myself but I’d be the first to admit that I’m only using a small amount of its features; just enough really to write this blog and to send e-mails.

We began this first lesson with me explaining some of the problems I’ve been experiencing getting the Dragon NaturallySpeaking software to work with a webmail account. For some reason it just does not seem to be able to work inside the mail application, so as a workaround I’ve been writing all my e-mails within Microsoft Word and then copying and pasting them into the webmail application. My tutor and I played around for quite a while trying different things but all to no avail so she’s going to speak to the software publishers. One option I was given was to use a desktop e-mail client such as Windows Mail or Outlook Express which would work much better with the speech recognition software. The problem with this however is that all my e-mails and contacts are then stored locally on my own PC’s hard disk. There are several disadvantages to this; the first is that I then need to remember to back up these files regularly in case of data corruption, hard disk failure or even theft. The second is that I could no longer access my mail or contact details on another computer which could be a problem if I were ever to leave the house for any length of time.

Leaving webmail aside (because we were spending too much time on it and not getting anywhere) we turned our attention to accessing by voice the various options available in Microsoft Word 2007. Here we fared a lot better and I was able to see that once I understood the various voice commands I could create documents with a variety of formatting options. I’ll play around with this bit over the coming week ahead of my next lesson and make a note of any questions I have. I think my biggest concern at the moment would be how effective the software is in being able to control web-based applications. This seems to be the way things are developing so there is definitely a need for people in a similar situation to myself to be able to control these applications by voice. It will be interesting to see what the software publishers have to say.

17th September 2009 – Shadowing / A meeting with Lara / Update on house extension

I woke up this morning to find two women smiling down at me! Not a bad way to wake up and start the day I thought :-). Kim had come along to shadow Ann so she could familiarise herself with my morning routine. At the moment I don’t really have an ideal backup to Ann so we are trying to get somebody else that I feel comfortable with to do my personal care when Ann is on holiday. Kim would be ideal as we already get on well together despite only knowing each other a short time, plus she has plenty of experience. I must say I felt even more pampered than usual this morning having two lovely ladies attend to my needs. I thought to myself I could really get used to this! It was also the first time that they had met each other and I found it encouraging that they both seemed to like each other and worked well together – something they might need to do later on when lifting and handling me will require a double up i.e. two carers.

Lara called round this afternoon; that’s my palliative care doctor, not the explorer on the computer game series! 🙂 Just thought I’d make that clear. We had quite a long meeting today as we’ve not seen each other for some time and covered a whole range of topics including my respiratory tests, planned adaptations to the house, physical and mental well-being, and the current state of my care package.

Looks like things are starting to move again on the proposed extension to the house. In Touch, the company overseeing the project are now going to prepare the drawings for planning application. We’ve settled on building an extension on the side of the house as opposed to the rear of the house. In studying both sets of drawings and weighing up the pros and cons I chose this option for the following reasons:

  • It will make use of dead ground at the side of the house that I cannot see anyway when sitting in the living room
  • Having an extension running the length of the house should provide some additional insulation for my living room which gets cold in the winter as I am on a corner
  • It will preserve my back garden and I will still have something nice to look out at when sitting at the dining table near the patio doors
  • My dining room will continue to receive plenty of light as there will not be an extension blocking off the light from the patio doors
  • It will avoid the problems of having an inspection hatch in the wet room for the sewer which runs through my back garden (there is a drain cover next to my patio)

The only thing that concerns me is that I’m being told that it may take a bit longer to get the planning approval. Up till now I’ve been told that it can take up to 12 weeks to gain planning approval so I wonder how much longer it will take. Either way it looks like being a winter construction project with completion due in the early spring. I’ll breathe a sigh of relief when it’s complete as I’ll finally have a downstairs bedroom and bathroom so could effectively live on the ground floor like in a bungalow. The upstairs rooms would then be available for guests or carers.

18th September 2009 – An afternoon at Milestones

Sometimes we can travel far and wide in search of interesting places to visit and yet miss those rights on our own doorstep. Such is the case with the Milestones Museum, Hampshire’s living history museum which was where Kim and I spent the best part of four hours of my social time this afternoon. Kim had suggested yesterday I might like to visit Virginia Water and I jumped at the chance, but when I woke up this morning it was a very dull and overcast day which showed no signs of improving by the time Kim arrived just after midday. So we quickly altered our plans to an indoor venue and Milestones immediately sprang to mind as it had been somewhere that I had been saying to myself ‘I must pay it a visit’ ever since it opened around 2000.

The museum is housed in a modern, spacious and purpose-built building on the Basingstoke Leisure Park. From the outside it can look a bit deceptive but inside the whole display area is sunk below ground level and it’s surprising how much they have managed to pack in. It is laid out in a series of cobbled streets, tramways, full scale buildings and vintage vehicles from the Victorian age onwards. In fact it’s a little bit like Flambards down in Cornwall. The focus of the museum is to show how people lived and worked in the Hampshire area over the past 200 years or so.

Kim and I were each given audio handsets and a map of the museum. The idea of course is to key in the number adjacent to an exhibit and then listen to the commentary. I of course couldn’t do that because my arms don’t work so Kim not only had to push me around in my wheelchair, but also had to fiddle around with the two handsets which was quite a juggling act at times. Our tour of the museum started in a mock-up of a Taskers Ironworks from the 18th century where a film was projected onto a screen depicting an actor in a period costume telling the story of how they made steam engines. From here we made our way to a sawmill where a (non-working) stationary steam engine powered various tools via a series of pulleys and drive belts.

The main street, which was cobbled, played havoc with the wheelchair. I really did get shaken to bits and it can’t have been easy for Kim either. To make matters worse (or more authentic if you wish to look at it that way) the street was inlaid with tram tracks so those with mobility problems need to take special care. I didn’t mind though as it all added to the atmosphere. The streets were lined with the typical sort of shops that you might find in any town at the end of the 19th or beginning of the 20th century such as a greengrocers, a tobacconists and even a pub which apparently serves real ale. We followed the cobbled street past a tram car, a gypsy caravan and an assortment of steam engines to a railway station ticket office inside which was a beautiful replica model railway of Winchester Station. Opposite the ticket office a coal wagon sitting in a siding complete with authentic looking weeds growing between the sleepers, was being unloaded and bagged up and placed on the back of a horse and cart ready for delivery.

Passing through a tunnel ‘transports’ the visitor to the 1930s or 40s. Again there is a selection of shops including a music shop where you can listen to popular tunes of the day on old 1930s gramophone players. Just outside there’s a lovely fire engine and one of the old familiar but fast disappearing red telephone boxes with a very old Bakelite phone. Across the street there is a little green with a bandstand and adjacent to this are a series of authentic posters one of which I couldn’t resist having my picture taken next to. It had nothing to do with the fact that she was a pretty girl :-).

The final part of the museum tells the story of Thorneycroft, a major employer of the area in days gone by. There’s a small selection of their vehicles on display too. In addition to the main exhibits were various displays and set pieces. One for instance shows home life through the decades through a series of decorated rooms such as a kitchen from the 1960s and a living room from the 1970s. There was even an old Commodore PET computer on display, already looking antiquated in these fast changing times of ours. What really caught my eye was a fascinating collection of old cameras dating from way way back. Sitting on the shelf was an old Bakelite Kodak Cresta just like the one my mum passed on to me when I was a child, and close by was a pack of expendable flashbulbs the size of hen’s eggs. Further along the display and moving forward in time I could see examples of cameras that in their day I had dreamed of owning and in some cases had.

Time passed quickly (no pun intended) whilst we were in the museum and I could easily have spent a few hours longer enjoying everything that was on offer (I have a fondness for history) but already the afternoon was drawing to a close so we made our way back up to ground level for a coffee and biscuits in the restaurant overlooking the cobbled streets and houses. It had been a really enjoyable afternoon and I would like to say a big thank you to Kim for taking me and looking after me so well and for taking the photos. I’m already looking forward to our next outing together.

Interior view of the Milestones Museum

At the Milestones Museum

Ahh here we are in the 60s kitchen and you can see behind me one of my carers preparing my evening meal. She's not as good as Ann, Francesca or Kim though. To be honest she's a bit of a dummy! The kid doesn't say much either 🙂


With Kim, my lovely new carer

This one is interesting. I found it in the museum' s archives proving that at some point in the future I must 'borrow' that DeLorean from Beaulieu and travel back to 1895 where presumably I have met Kim's great-great-grandmother! There is an uncanny resemblance between them don't you think? 🙂

19-20th September 2009 – Treats / A surprise invite

I had a couple of food treats this weekend, simple things to be sure but lovely when you haven’t had them for a long time. Earlier in the week Francesca was asking me what foods did I miss and I told her how much I used to enjoy crispy baguette bread which I used to buy every weekend and stuff with various fillings. Unfortunately as my strength faded I lost the ability to use a bread knife to cut it. Eventually my hands became so weak I could not even hold the bread. So it was a real treat on Saturday morning when Francesca was making my breakfast that she surprised me with a delicious crispy bacon and fried egg baguette – delicious! I still couldn’t hold it of course so Francesca did the honours whilst I took bites out of it like a hungry alligator!

On Sunday I had another food treat for breakfast when Kim, who was standing in for Francesca, cooked me a delicious bacon and cheese omelette. It brought back pleasant memories from a few months ago when Alison used to make them for me on a regular basis. But what really made them special was the fact that Allison kept chickens and would often bring over a bucket of fresh eggs. Omelettes made from these eggs were both delicious and bright yellow and a world away from the eggs bought in a supermarket.

I had another surprise on Sunday when Val (my friend from Basingstoke neighbour care) phoned to ask if I would like to join her and Jim on a trip out into the countryside that afternoon. They were off to visit a private garden just west of Stockbridge near Broughton that was being opened to the public for the day in aid of charity. I jumped at the chance, both eager to get out of the house for some fresh air and also having a chance to socialise with friends. To be honest the gardens were nothing outstanding and it looked like most of the flowers had peaked some time ago, but it was still a pleasant break from the monotonous routine of daily life and be in the company of good friends.

With Val at a private garden open day

With Jim at a private garden open day

With Val at a private garden open day

With Jim at a private garden open day

So all in all not a bad weekend. I’d like to thank Francesca and Kim for the delicious breakfast treats they cooked me, and a big thank you to Jim and Val for the kind invite to take me out and for also having the patience to learn how to use my camera.

22nd September 2009 – Further training

Karen from AbilityNet phoned this afternoon to deliver my second training session on the Dragon NaturallySpeaking speech recognition software. Over the past week I’d been playing around in Microsoft Word 2007 familiarising myself with some of the things that we’d discussed in the first lesson such as accessing various tools on the ribbon bar. I’d also been making a mental note of things that I wanted to touch on this week such as problems with certain programs coexisting with Dragon NaturallySpeaking. I had found for instance I could not load Adobe Photoshop Elements 5 into memory if the speech recognition software was already loaded. I had also discovered that I could not access the various menu options, toolbar buttons or dialogue boxes for this program either. After spending considerable time looking at the problem Karen had to concede defeat as well so it looks like I will be relying on the laptop’s trackpad and my foot controls when editing digital photos. I was kind of hoping that I might be able to use my voice to navigate around the menus and to specify numeric values when applying a tool or effect to the image.

We also looked at basic web navigation this afternoon and here the programme seemed to fare a little bit better in terms of accessing Web addresses and hyperlinks. However the program struggled to access my website bookmarks in the favourites menu called up from the toolbar and required some rearranging of the screen furniture to get this to work. Another area where the program struggled was accessing my online calendar which I use for organising all of my medical appointments and meetings.

At the moment I’m left with the feeling that outside of its comfort zone of dictating letters and e-mails the program is of limited use. I’m really disappointed in its poor control over web-based applications. To me this seems extremely short sighted as more and more applications are becoming web-based and this is an area which I feel software developers need to concentrate on. So for the foreseeable future it looks like I’ll be using a hybrid selection of input devices to enable me to continue working on a computer. I’m still entitled to a few more remote training sessions but have not scheduled another one until the week after next so that I have time to digest what I have learnt.

25th September 2009 – A night in A&E

It had to happen sooner or later, the writing has been on the wall for some time now and I’ve been saying to people that using the stairs was an accident waiting to happen because of the weakness in my legs and the unpredictable nature of keeping myself balanced. Descending the stairs has become traumatic, and with the (currently useless) stairlift track occupying the widest part of each stair tread, I have to be extra vigilant. For this reason I try to minimise the amount of times I use the stairs each day (to use the bathroom) by regulating my liquid intake to certain times of the day. But inevitably there are occasions when I simply have to use the stairs outside of the times when there are carers here. This afternoon at just after 4 PM was one such occasion. As I stepped off the landing to begin my descent I suddenly lost confidence in my ability to keep myself balanced as it started to feel I was going to fall forward. I quickly stepped backwards onto the safety of the landing but I was already too late and continued to lose my balance only this time I fell backwards rapidly and smashed my head into the panelled door of my study before falling in a crumpled heap on the carpet. I didn’t lose consciousness but really did hit the door hard as it made a terrific noise. Lying helpless on the floor all I could do was twitch my arms, but as I moved my head from side to side I could hear the carpet squelch as if I was running my head over a wet sponge. I realised with a sickening feeling that I had cut my head open. The question was how serious? Unable to move and inspect it myself all I could do was lie there helpless and try not to move my head too much for fear of making it worse.

Frustratingly I had no idea who was going to do my care that evening as despite the lateness of the hour the care agency had not yet allocated somebody to do it and were struggling to find someone. I lay there wondering who it would be and how competent they would be. If it was somebody new or with little experience would they be intelligent enough to investigate when I didn’t answer the door or would they just assume I was not home? The thought of lying on the floor all night with my head bleeding, was to say the least rather frightening. When you have nothing more to do than to look up the ceiling time passes incredibly slowly and I became increasingly worried as the light started to fade and there was still no sign of a carer. Eventually I heard a car pull up on my driveway and the familiar jingle jangle of Ann’s bunch of keys. I breathed a sigh of relief. The bell rang and all I could do was gaze helplessly at the intercom unit just a few feet away on my desk. I shouted as loud as I could ‘help me’ but there was no response as she couldn’t hear me. Fortunately Ann is an experienced carer and used her own key to gain access. I called out to warn her that I had taken a fall so that it was not such a shock when she found me sprawled out on the blood-soaked carpet. She immediately contacted the emergency services and within a few minutes the first responders arrived to assess the situation. The guy who inspected my wound said I had lacerated the back of my head and it would need stitches or gluing. He said that he would try to keep me out of A&E by trying to arrange for somebody to come to my home but unfortunately there was nobody available. A call was put out for an ambulance. In the meantime the first responders got me to my (unsteady) feet and helped me to the bathroom as by this time I was really desperate to use the loo. It was quite an experience I can tell you standing at the loo being held up and supported from behind by someone whilst Ann fumbled with my clothing, all the time being watched by another woman who had turned up to assist. Under these circumstances it is hard to ‘go’.

The next hurdle was getting me down the stairs. Fortunately I have a stairlift and although it’s not much use by myself is usable if there are a couple of people around to assist me into it and control it. Within a couple of minutes of placing the call an ambulance arrived outside the door and the paramedics took over. They supported me under my arms and helped me walk gingerly to the front door where I was loaded onto a stretcher and then placed in the back of the ambulance and taken to the A&E Department of the Basingstoke Hospital. So far everything had worked quickly and smoothly but once we were in the A&E department things ground to a halt. It was Friday night and the department was very busy. They found a cubicle for me and transferred me to a bed. Ann, bless her, had followed us up in her car and sat by my bed for hours holding my hand and offering comfort. She also very kindly contacted my brother to let him know the situation and advised the care agency of what had happened to me.

Hours passed with no progress. My right shoulder blade was starting to feel very uncomfortable and a little bit painful so we asked the nurse for some pillows to rest it on. I took the opportunity to ask where we were in the queue and explained my situation. She went away to find out and came back saying that she had arranged to have me looked at next. I was then wheeled into another room where a Oriental doctor took a look at my laceration after cleaning the wound. My eyes bulged wide when I saw him take out a staple gun! I became rather worried at this point as I knew from painful previous experience how much it hurt just getting a staple in your finger. Goodness knows what it would feel like having them in your head. I expressed my concern to him but he told me that if he anaesthetised that part of my head it would still require several needles which would hurt about the same so I might just as well have the staples straight away – gulp! Well it did hurt but surprisingly not as much as I had imagined. He put three staples in my head.

Whilst we were seeing the doctor, Di, a member from the All Care management team dropped in on her way home from working late at the office to see how I was and what could be done to help me. She suggested that because I lived alone that it would be a good idea that I didn’t go home this evening as there would be nobody there to care for me if a problem arose. As it was close to midnight and I was still feeling very weak I readily accepted the suggestion. Di negotiated with the hospital staff for me to have a bed that night then she and Ann went home whilst I lay on the bed waiting for them to organise things. Eventually at around 12:45 AM I was wheeled through the corridors into the short stay ward where I was given my own room. After taking my blood pressure and temperature and asking me what I wanted for breakfast I was finally able to get some much needed sleep.

26th September 2009 – A day in A&E

Trying to get to sleep in unfamiliar surroundings can sometimes be difficult and so it was with me that night as the various noises of staff going about their business, doors slamming and plumbing & heating systems switching on and off intruded into my sleep. I was finding it very difficult to get comfortable; my right shoulder was really starting to ache and I was suffering with painful cramp in the toes of both feet. So when the night nurse dropped by to see how I was I asked her for some painkillers. For a while it did help and I was able to get some light sleep. I woke up at 7 AM to find a nurse in my room wanting to take my blood pressure and temperature again. At 8 AM a (student) nurse came in and introduced herself as Helen and said that she was there to help feed me. I had only taken a few mouthfuls of cereal when the familiar and very welcome face of Francesca appeared. She had just been notified of my situation by the care agency and had dropped everything to rush to the hospital to be with me. I was deeply touched by her concern for me and I felt so happy to see her. Francesca had not only come to pay me a visit but also to participate in my personal care and liaise with the nurse.

After breakfast a doctor came along to examine my head wound. They were ready to discharge me when Francesca voiced her concerns about sending me home so soon to an empty home. She argued that it would be better to leave it until later in the day when she would be there with me to cook my dinner. This was agreed on so for the remainder of the day I just lay on the bed and the chair adjacent to it and relaxed. After lunch my brother Jason dropped by to see how I was and to keep me company for a while and then I was alone again for what seemed like ages until my brother returned to take me home. I’d been off my feet practically an entire day so felt particularly weak in my legs and lacking in confidence to walk very far. I wasn’t going to attempt to walk all the way through the hospital anyway and was transported out to my brother’s car in a hospital wheelchair. In the meantime Francesca had gone back to my house and had cleaned the blood off the carpet, made a start on my dinner, and was ready to help assist my brother get me out of the car and safely upstairs using the stairlift.

It felt good to be home but the accident will change things forever. I no longer have the confidence to tackle the stairs using my own legs. My ability to keep myself balanced when climbing or descending steps is getting worse all the time and I just don’t want to take the risk. This time I was very fortunate because I fell backwards instead of forwards. It could easily have been so much worse had I tumbled down the stairs. The problem I have now is that I just cannot use the stairlift on my own because of the previously mentioned problems. To complicate matters further Liftech are coming in on Monday to remove the top section of track and take it away with them so that they can extend it. That means I shall be trapped upstairs until they return with the new piece. So for the next week I shall be living on the upper floor of my house where I will have access to my bedroom, bathroom and study. Just as well I don’t have any appointments that require me to leave the house.

Over the past 24 hours I’ve been fortunate to meet some really kind and caring people, the true unsung heroes of this world. I can’t possibly remember all their names but would like to thank Steve (the paramedic who took care of me in the back of the ambulance) and Helen (the student nurse who cared for me Saturday). These people work hard and tirelessly for all our benefit. Some people may knock the NHS but I for one am very grateful that we have it. All the people I dealt with were kind, caring and keen to please.

I would also like to express my gratitude to Ann and Francesca for all that they’ve done for me. They are without doubt both very good carers but this weekend their loyalty and devotion to me was amazing and reinforced my belief that I am truly lucky that I have such kind and caring people looking after me.

And finally, what about those staples in the back of my head? Well the hospital will be contacting the district nurse who will be coming out to my home around the middle of next week to remove them. I am so looking forward to that – not!

27th September 2009 – Settling in

My brother came around mid-morning and has re-situated the laptop computer and plug-in USB peripherals (Gooseneck microphone, foot switches and external speakers) so that they are now located on my desk in the study upstairs. At least now I have access to the outside world again. I am truly lost without my computer. Thank goodness then for portables and wireless Internet connections. These technologies really do make life easier for people like me. Back online I was able to start catching up on e-mails and writing some of my own to inform my healthcare professionals of my accident.

A couple of problems with being based upstairs have come to light straight away. The first is that at mealtimes there is limited legroom under my desk. So although there is room for food and drink I just cannot get close enough to the edge of the table for my arms to reach it. Consequently I will have to rely on my carers to feed me. This isn’t so bad though as I have been gradually moving in this direction for some time anyway. In fact there is a significant advantage because it saves me from having to constantly bend down towards the plate so my lower spine does not ache so much.

The other problem is that I cannot undress myself upstairs as there is nothing of suitable height for me to lean against. This will leave me with no other choice than to have my last carer of the day help undress me even though I’m not ready that early for bed. But again to be honest I was not far off this point anyway. I’ll need to discuss this soon with my care manager.

28th September 2009 – Life upstairs

And so it begins, my week of confinement to the upper floor of my house. In truth it probably won’t be so bad because most of the day I’m just sat at the computer anyway so I suppose it doesn’t really matter that much whether I do this at the dining table downstairs or in my study upstairs. It becomes a little bit more of a problem when I have appointments at the house but we’ll just have to manage.

Starting today Kim is taking over the two-hour Monday morning call from Ann, an arrangement that I think will please everyone. Ann will regain her Mondays which she only picked up as a favour to me when Alison left, Kim will benefit from more hours with my care package, and I’ll benefit by having three main carers familiar with my morning routines. And it was a nice relaxing morning too with both of us singing along and playing spot the intro to music streaming off the Internet whilst Kim busied herself around the house.

Liftech called this morning to remove the top section of the stairlift track. They have taken it away so that they can extend it. I hope to have it all back by this Friday and I have stressed the importance of this by telling them that I had an accident last Friday and that I am now confined to the upstairs.

29th September 2009 – Training for the girls… or at least some! / Another update on the house extension / Chatting to my OT

My care agency has let me down again. I had gone to all the trouble of liaising with Margaret, the community physiotherapist to have some further training for my existing carers and have some new carers trained up, and what happens? The only people that turned up were my ever loyal Ann and Francesca who had come along to learn the additional techniques I have requested for my hands which are becoming difficult to clench – the opposite to what is normally expected for people with MND. I had really hoped to be able to get some of these other people trained up so that when Ann goes on holiday soon I will have someone else who can step in. The last time I had to go all week without my passive arm movements I knew about it the following week.

I’ve been sent the elevation plans and modified floor layout of the proposed house extension. It all looks quite nice with sufficient room for my needs even with a large hospital size bed. They are ready now to submit the drawings for planning approval which I’m being told they expect to have within 8 to 10 weeks. I’ve written back granting my approval so now it is just a waiting game. Assuming all goes well we are on track for completion of the entire project by the end of winter/early spring. That’s still a long way off of course and a lot can happen to me in that time.

I had a 90 minute chat on the phone with my OT this evening bringing her up to date on events over the past few days and making further requests for equipment. For example I’ve asked for a modification to the front doorstep as it is too big a drop now. Every time I step off it onto the tarmac driveway it affects my balance and I’m in danger of toppling over. I’ve also asked her to take another look at emergency lifelines as I could surely have done with one of these last Friday instead of having to lie on a blood soaked carpet for three hours. I’ve mentioned telephones too as my cordless phone is hard to operate at times and requires me to stand up to get my arms into position as I cannot simply just reach out.

30th September 2009 – Duvet wars! / The District Nurse calls

A sure sign that my legs are getting really weak is the fact that I’m struggling now to lift a duvet cover with them whilst lying in bed. I had need early this morning to visit the bathroom so I used my legs as I always do to kick the duvet away. When I came back and fell back into bed (quite literally these days) I had a devil of a job trying to reposition the duvet so it covered me again. When I had kicked it off the bulk of it had fallen off the end of the bed and the sheer weight of that much duvet was too much for my legs to lift. So once again I rolled out of bed and tried grabbing each side of the duvet in turn with both hands and tried to give it a good tug. Unfortunately I have so little strength that I barely made an impact so went back to bed feeling resigned to the fact that I was probably going to have to spend the rest of the night with no duvet covering me and gradually getting colder. Eventually driven on by feeling cold I made another attempt at trying to pull sections of the duvet onto the bed and after much thrashing about I was successful. Of course by this time I was completely worn out and feeling very hot. In fact the last thing I wanted at that moment was a duvet covering me!

I’ve had my staples removed. The district nurse dropped in late this afternoon and pulled them out with the staple extractor I was given on Saturday. To be honest it didn’t really hurt at all. I do have a headache this afternoon but it is nothing to do with the staples. The frustrating thing is I am here upstairs alone and I cannot even get to my paracetamol which are downstairs. I’ll have to wait until Kim arrives this evening. Memo to myself: leave some paracetamol on my desk just in case!


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The month of May – part 3

Calendar entries highlighted in yellow

14th May – Goodbye to ‘Mark’s Meadow’ / A decision made

Ann has started putting into practice the physiotherapy techniques learnt yesterday. We’ve decided to make this the first job of the day so I waited patiently in my bedroom for her to arrive and then sat on the bedside chair whilst she lifted and folded each arm in a variety of ways and repeated each exercise a number of times. She then moved on to stretching and straightening the fingers & thumbs which can be a real problem with MND as they will have a tendency to curl inwards over time. Hopefully this should help prevent my muscles from stiffening up. It should also prevent me from experiencing difficulties dressing by maintaining my range of motion.

‘Gavin the Gardener’ turned up early this morning whilst I was having my personal care and has made a start on tackling the garden. He’s trimmed back the Mexican Orange Blossom shrubs that were encroaching on the pavement at the side of the house, mowed the front, back and side lawns and trimmed the edging. It’s starting to look tidier already, especially without all those Dandelions in the lawns. But there is still a lot of work that needs doing before its back to how I had it early last year. I’ve booked him in to come back next week for a couple of hours and will continue this until it’s up to scratch then just have him come along once a fortnight to keep it maintained.

I had a surprise phone call at lunchtime from Eddie, the PEG nurse specialist who I met recently to discuss tube feeding. He’d called to find out if I’d reached a decision yet regarding having the procedure done. I explained that I had and that after careful consideration had decided not to go through with it at this time because I was showing no signs of difficulty swallowing, chewing or indeed speaking. All my symptoms are spinal onset related and although it is possible for bulbar symptoms to develop there was currently no indication of that. I explained that I was uncomfortable having an invasive procedure that I couldn’t foresee having a need for just yet, but having a plastic tube dangling from my chest would be a constant physical reminder and would still need maintaining. I realise of course that the reason it’s being suggested at this time is because of the decline in my lung function, nevertheless it just doesn’t feel like the right time for me. He was very understanding and said that because he already has the referral I would be treated as a priority case and could have the procedure done at short notice if I should change my mind (of course what he didn’t say is that it would be subject to my lung function). In the meantime I’ll keep an eye on any signs that suggest the disease is developing bulbar symptoms.

15th May – Monthly visit to my GP / Some good news

Jim & Val (Basingstoke NeighbourCare) called this afternoon to take me down to the doctors surgery for my monthly appointment with my GP. As usual just a chat about how I was doing and any new problems I was experiencing, as well as filling her in on my adventures down in Southampton. I told her about my decision to withhold on having a PEG feeding tube fitted at this time and my reasons for doing so. I explained that my decision had been made after careful consideration, of talking to people and researching other people’s experiences. In other words it had not been made out of ignorance. I was surprised to hear her say that she felt I had made the right decision although she is not the first person who has said that. Others who have experience of PEG and MND also felt that it was not suitable at this time.

Whilst at the surgery I also had my 6-monthly blood test. This is the one that monitors the effects of Riluzole on liver function. You may remember from my post in November that ordinarily after being on Riluzole for a year and having blood tests every 3 months I would then move to an annual blood test. However, in my case there had been a couple of episodes of elevated Bilarubin and so as a precaution the Neurologist had decided to take an interim test half way through the year. Fingers crossed that the results come back okay.

Had a phone call this afternoon from the care agency with some good news. They’d just been notified that Rachel (Social Care Manager) had been successful in gaining funding approval from the NHS for extra care hours. When I asked how many hours (thinking it would be a compromise) I got a real shock when I was told that we’d got everything we’d asked for! This is such good news because lately with the increase in personal care, the addition of my arm/hand exercises, and me slowing down, it was starting to feel quite rushed and stressful. My carers were struggling under the time constraints which were often causing them to over run. Now things should be a bit more relaxed at both ends of the day plus I’ll gain a 30 minute lunchtime call and even a slight increase in social time. I’m really pleased about this as I’ll have someone around the home to help with anything I need for more of the day plus I’ll have more company and not feel so isolated. In one fell swoop my care package has doubled in size! But this is the nature of MND. As time goes by it sucks up more and more resources. My only concern is whether my existing carers will want to pick up all the extra hours. Because I will now be getting 28 hours care a week it will be prudent to introduce a fourth main carer (particularly with the summer holidays on their way) to spread the load. I know who I would like I just don’t know if she would be able to do it yet. Stay tuned!

16th May – Beam me up Scotty!

I had a pleasant evening with my brother (Jason) and his wife (Chery) who had treated me to a trip to the cinema to see the new Star Trek movie that opened last week. For me it was like a trip down memory lane as Star Trek is one of those shows that I grew up with as a child of the sixties and I can remember eagerly awaiting each new episode on the (black & white) TV. Gosh, that’s showing my age isn’t it? Today we’ve become used to science fiction and elaborate effects and its becoming increasingly difficult to get that wow factor. But the amazing thing about Star Trek is that it originally aired in 1966! That’s 3 years before man landed on the moon and decades before personal computers, the Internet, mobile phones etc. I started watching it when I was just 6 years old. Warp drives, transporter beams, tricorders and this huge ship carrying 400 people kept me enthralled for 3 years. Over the years there have been various attempts to re-launch the franchise with varying degrees of success, but none managed to capture the magic of the original because of its place in history.

The film I saw this evening was a prequel to the classic sixties series and brings the main characters (who’s never heard of Kirk & Spock?) together for the very first time and before the now famous ‘five year mission to seek out new life and new civilizations’… I enjoyed the film. It had a fresh look to it, featured some great special effects and set design, had plenty of action to keep the film moving along at a brisk pace and had enough references to the original series to keep the fans happy.

Getting from my house to my seat in the cinema was the stressful part. My brother’s car is very low to the ground and practically impossible for me to climb out of now so I needed his assistance to pull me upright enough for my own legs to take over. Walking from the car park to the cinema was tiring but not nearly as much as climbing the stairs to the cinema or the steeply raked stairs in the auditorium which left me so weak I was all but ready to fall into my seat. At the end of the movie I again needed help being pulled out of my seat. I was relieved to get back home but very grateful for the evening out. Thanks Jason & Chery.

18th May – New care package hours begin / Washed like a baby / A bad evening

Today saw the start of my newly increased care package. And to kick things off I had Ria, my original main carer from when I started homecare, called in for a couple of hours this morning. She was being assessed for her NVQ level 2 and had arrived with an assessor to watch how she worked. I was one of her few clients that she’d cooked extensively for so I had agreed with her a long time ago that when she did the food preparation and handling part of her NVQ she could use me. And it was so nice to have her company again if only for a short while. It felt a little strange, however, trying to eat my breakfast with an assessor sitting across from me writing copious notes.

I took a fall late this afternoon whilst walking up the stairs. I’m still not sure if I tripped or if my leg gave way as it happened so quickly. One minute I was upright approaching the landing at the top and the next I was getting a close up view of the carpet. Fortunately I don’t appear to have suffered any cuts, bruises or breakages, although my chest hurt for a little while afterwards as it was this part of me that hit the edges of the stair treads. But the real problem came next. Because I have so little upper body strength and my arms fold as soon as a load is placed on them I was actually trapped sprawled out across the stairs. I just couldn’t push myself up. In the end I managed to wriggle and turn myself around so that I was sitting on the stairs looking down. With my legs now lower then my backside I was able to propel myself up into a standing position although I was trembling as I did it because of the fear of going too far and having momentum carry me so far forward that I ended up falling down the stairs. Fortunately this did the trick but left me pretty shaken up for a long time afterwards. In that moment it was rammed home to me how vulnerable I have become and how dangerous my home, the one place I should feel safe, has now become.

Tonight I gave up the last vestiges of my personal care and had Alison give me a shower. In all honesty I should have given up ages ago but foolish pride, plain old stubbornness and a determination to fight what is an unfightable disease kept me going past the point where I was doing the best of jobs. In the last couple of weeks the risks associated with showering myself had become too great to ignore. Now I’ve crossed that threshold and handed over all my personal care I can relax and just accept it. My lovely carers will do a much better job than me and I’ll save a lot of energy (not that I have a lot left) and feel much safer.

I had one more fright left reserved for the end of the day. I got trapped upstairs when I went to get another telephone handset (because the one by my laptop had a flat battery). As I climbed the stairs I could feel my legs getting weaker and weaker and barely made it to the top before quickly sitting down. But when I tried to get back downstairs again I lost all confidence as my legs had grown quite wobbly and I was struggling to stay upright. After several failed attempts of walking to the edge of the landing and backing away again because my balance didn’t feel right I reluctantly had to phone my brother to come round and help me get to bed. I felt embarrassed at not even being able to climb my own staircase and fearful of what tomorrow would bring. Thank you Jason for everything you did that night.


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The tipping point

“A slow gradual change that becomes irreversible and then proceeds with gathering pace”.

I recently wrote about all the problems I’ve been experiencing lately and how they have started to cut into my core activities of washing, dressing and feeding. That steady deterioration has continued to the point where I now feel I have reached a tipping point. Over the past week or so I’ve experienced an ever increasing series of episodes of weakness and paralysis in my hands and shoulders. I couldn’t even find the strength a few days ago to make a cup of coffee and I’ve now lost the ability to raise a drink to my lips. I’ve struggled badly with just trying to get dressed by myself. I’ve had occasions whereby I’ve been forced to walk around the house half undressed because my hands refuse to co-operate with buttons or zips, or because my arms are just too weak. I’ve never felt so helpless. I’m finding that tasks are taking an increasing amount of time to perform and are consuming much of my energy leaving me feeling very weak afterwards and just wanting to sit down and ‘recharge’. At times it just feels like my life energy is slowly draining away, and I suppose in a sense that is exactly what is happening. I am starting to look back at each day and wonder just what I have achieved apart from dressing and preparing meals. So much valuable time is now being lost. Between an increasing paralysis, constant feelings of exhaustion and time just seeming to go nowhere, they have all collectively contributed to my hastened need for care.

I do not believe that the disease has speeded up. I believe the thinking is that the speed throughout the disease remains constant although of course varies from one person to another. I just think that this is an accumulative effect of so much muscle tissue wasting away resulting in weakness and so many nerve cells either dying or dead leading to paralysis. Eventually you get to a point whereby there isn’t enough strength or movement left to perform a task…hence tipping point.

I need to start thinking of my available strength each day in terms of an ‘energy budget’. I only have so much available so how do I best utilise it to maximise my quality of life? I’ve been cutting into that budget pretty deeply lately and it has at times meant almost not being able to get dressed or make something to eat. In fact I’ve recently discovered now that we are into autumnal weather that temperature is also starting to have an affect on me. I went out for a short walk the other morning and when I came back my hands were so unresponsive (due to the cold) that I had great trouble just picking up the cordless phone and accessing a message left on the answer phone.

I had hoped to be able to get through a whole year since diagnosis all by myself and although I am only just over four weeks away from doing so I feel that I cannot take the chance on holding out another month by myself in case the paralysis episodes become permanent. It takes time to put a care package in place which is why I already made a request for care some weeks ago.

So it was fortunate that last week I had a visit from a doctor based at the local hospice whom I’ve been keeping in contact with on a monthly basis. She’s a consultant in palliative care medicine and I first came to her attention early this year through my GP via one of their regular meetings. In all my dealings so far with her I’ve found her to be very sympathetic and supportive to my needs and with a true understanding of what it must be like trying to live with a life limiting illness. In other words exactly the kind of person you would hope to find in palliative care. Her visit coincided with a particularly bad spell I was having and so she was able to see first hand some of the difficulties I’ve been under. I suppose coming to the door wearing not much more then a smile kind of says that maybe something is not quite right here, hehe..

To her credit she reacted very quickly to the change in my circumstances and by the end of the day had emailed me with the steps she had put in place. The intention was to get things moving on the application for continuing care and whilst this was being processed to get some emergency care in place by the weekend. She did stress however that acceptance criteria for continuing care were quite strict and it was currently very difficult to get any funding from the NHS. But it was still important to get things underway and even if the application failed then it would be easier to re-apply once circumstances changed.

The next morning I had a visit from a very pleasant district nurse who called to assess me for continuing care. We discussed all the disabilities I’d been encountering and how the disease had been progressing. After scanning down the assessment form she explained that my current needs would be classed as social rather then health. So for example being paralysed and unable to prepare or eat food by yourself is a social need. On the other hand if my throat muscles were so weak that there was a chance that food might get stuck and block the airways and therefore would require a nurse on hand to suction the food out then this would be classed as a health need. I can understand that but even I know that withholding food and water will soon kill you and that therefore dying from starvation/dehydration is a health risk!

The nurse left (after first being kind enough to prepare a midday snack for me) promising that she would try to get some care in place via a Rapid Response team by the end of the day. I was very grateful to hear this as I was experiencing another bad day and couldn’t do much myself. That afternoon I got a phone call from her to say that the NHS were refusing to fund any care for me and that my case was being passed over to Social Services. Later that afternoon I was contacted by Social Services equivalent of the Rapid Response team. They began by asking me to explain in my own words the difficulties I was having (despite getting all that information from the District Nurse). No sooner was this out of the way and they launched into a series of questions relating to finance and having a financial assessment officer call and assess my ability to pay for any care I receive. They asked about my level of savings and because they exceeded a certain level immediately told me that I would have to pay the full cost of any care I wanted (currently £14.50/hour) because I didn’t qualify for help (something which I’d heard a lot since I finished work and had started to look into what help would be available). By this time I had grown tired of their money-centric approach and I’m afraid I got into a disagreement with them over their attitude and approach to assisting someone who has an urgent need for help and is terminally ill. Never once did they talk about any care that would be provided quickly – it was all about money and having already had a bad week and needing some help as soon as possible found their entire approach to be unsympathetic. I tried to stress to them that I had a life limiting highly destructive neurological disease that was paralysing me, that I lived alone and had no help, that I had virtually no income and was living off my savings to pay all my bills etc. and that I had a fairly urgent need for some basic help with eating. Needles to say that it all fell on deaf ears and consequently I didn’t get any assistance from them. I didn’t like the idea of effectively being blackmailed when the whole idea was to get something in place on an emergency basis. I felt they had their priorities wrong. Clearly money still takes precedence over easing suffering. All I did manage to get out of them was a list of care agencies that they dealt with themselves and to be told that if I went private it could work out slightly cheaper (presumably then Social Services add their own mark-up to cover the costs of acting as a go-between).

By this time I felt thoroughly deflated and just couldn’t face the prospect of rushing around myself trying to sort out which was a good agency and which wasn’t. I had enough on my mind without having this extra burden. I decided that I would seek advice from my palliative care doctor as she’d already asked me to contact her if there were problems. Unfortunately I had to get through the weekend first. Thankfully my friend Robin was on hand to prepare some food which made life a bit easier and helped conserve some energy.

I found a far more sympathetic ear in the folks at the hospice and soon my palliative care doctor was putting things into motion. She arranged to send out their social worker who turned up that afternoon to advise me on my options having dealt with similar situations in the past. She actually works for Macmillan Nurses (the people who cared for my mother when she had cancer) and is a sort of bridge between Social Services and the Hospice. She was very friendly and more then willing to do all the leg work in setting up a care package tailored to my needs. We discussed the sort of things that I would need help with and which would give me the most benefit in terms of saving me time and energy. She was very candid with me and said that she felt that at this time I would not get help from the NHS with my care and that I would have to self-fund my care. However she also said that in the meantime they would be building a case for continuing care and that this would start next week with a case conference which I and various health care professionals involved in my care would meet up to discuss ongoing care.

The following day (today) I had some feedback from my social worker at the hospice. She’d been able to find a care agency with some spare capacity that would fit my current needs and would involve two lady carers who would split the workload. Unfortunately though one of them (the main one I believe) was not available to start until later in the month so in the meantime (starting tomorrow) I will be getting some emergency care (from the second lady) but nowhere near as much as the full package has specified. And I will have an opportunity to meet my main carer before she starts. At least now I can rest a little knowing that I don’t have all this to arrange.

And so it begins…a gradual transition from a life of independence to one of dependence. I’ve fought hard to stay independent and maintain my dignity but of course I always knew that eventually I would loose that fight just like all the others. It is nonetheless a significant moment for me as I know that (with the exception of a medical miracle) once I get onto the care treadmill I’ll never leave it and just like the progression of the disease itself the amount of care I receive will only increase with time. However, as far as I’m concerned the idea at the moment is to just relinquish enough tasks to make life a bit easier and not to be totally taken over. I’m still fighting it! I’m hoping that with the addition of some care it will give me back some of the time and energy I have been expending lately so that I can do more productive things and elevate my quality of life which has fallen a bit recently. Needles to say really that I will return to this subject in more detail at a later stage when things have been up and running a while.


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First tumble

Well I suppose it had to happen sooner or later but this was not how I imagined it would be or indeed this soon. But then I only have myself to blame…

I’ve been quite a keen cyclist for the past seven years. I’m not what you would call a racing or mountain bike enthusiast, just an evenings and weekends fair weather cyclist. You know, the typical office worker trying to keep the weight down and the circulation up. And I guess that is why I got into it originally – as a way to try and keep fit and to combat the effects that a fairly sedentary lifestyle can bring. The ominous spectre of middle age was looming…

But what started out as something that I felt sort of compelled to do gradually over time turned into something that I really enjoyed and would look forward to. At one point I bought a little trip computer so I could see how many miles I was clocking up each week, trip etc. In the first summer I had it I managed to clock up just over a thousand miles! Back then I seemed to be out on my bike just about every day. In the evenings after work I would change into shorts and T-shirt and play ‘beat the clock’. I used to have a 12 mile circuit that would take me around the housing estate and out into the countryside past Manydown farm to the neighbouring village of Oakley. I would constantly try to shave a few seconds off each time until it got to the point where I felt fit to collapse when I arrived home. On the occasions that I wasn’t trying to beat my own record I would adopt a more leisurely pace. There is a riding school out by Oakley and whenever I cycled through the village I would pull over and stop just past the old traditional stone church and lean over the gate to the field where the horses grazed and wait for them to walk over and say hello. Well sometimes I would be there for ages. You know what it’s like yourself; once you get chatting to a horse you just can’t get away, they just have to tell you their life story. That or complain about the ever rising price of hay :-).

At the weekends I would set off with a full bottle of water and head off towards one of the nearby towns such as Alton, Alresford or Andover. We don’t have any mountains here in Hampshire but we have plenty of hills and although it might look fairly flat on a contour map I can assure you that when you are on a bike you know about it! Each year I would try and stretch myself that much further by increasing the number of miles cycled in a day. I eventually ‘maxed out’ at 70 miles which was a full day’s cycling and left me completely exhausted by the time I crawled home that hot summer’s day. It had been the only time when my energy levels had completely collapsed at one point and I had to take a long rest before carrying on. And boy did I sleep well that night!

More recently I tended to do it purely for the pleasure of being out in the fresh air and the joy of passing through charming little villages full of thatched cottages, duck ponds and stone bridges. What a wonderful stress-free way to spend a day in relative peace and quiet away from the traffic congested ‘A’ roads. And on a summer’s day there is nothing better then to be out cycling down the country lanes with the sun on my back, wind in my hair and a big silly grin on my face as I hurtle down the hills!

So here we are in May and fast approaching June. With driving becoming a distant memory and walking rather limiting in range I was starting to get the itch to get back in the saddle. I hadn’t been cycling since last summer and I was curious to see if I could still do it. I felt fairly confident because walking wasn’t really presenting any problems and if I could start cycling then it might provide indicators of how the disease is progressing – in fact very much like I do with my walking. The indicators that I would look at most would be how my legs were performing; whether I felt weak or whether I felt that they were about to stop working altogether, my overall stamina level and also how I was breathing; whether I was struggling to breath cycling up steep inclines, or whether I just felt extremely tired at the end of a ride. So I would carefully keep a watchful eye for these early indicators so that if anything did start to develop I would be able to alert my GP.

Another reason for wanting to push myself physically is that I believe it is good to keep the limbs moving to help combat the stiffness that can set in. Sure it’s tiring but better that then have muscle tissue that has grown so stiff that moving the limb even with help becomes either difficult or painful. And hopefully by trying to keep the muscle tissue supple I will be able to keep the cramp at bay. And I suppose another very real reason for doing it is because one day I may not be able to so and I want to make the most of the here and now as some day all I’ll have will be these memories of mobility to feed off.

So a week ago today after first struggling to get the garage door open (not easy when you cannot raise your arms very high), I dusted down the frame and pumped the tyres up on my trusty Saracen Traverse. I clipped the trip computer to its cradle on the handlebars and set off. With a clear blue sky, the sun shining and a gentle breeze blowing it felt good to be back in the saddle on such a wonderful day and without a care in the world. I started singing ‘two wheels on my wagon, and I’m still rolling along…’

To be on the safe side I decided that until I felt confident and safe enough I would stay off the roads and just stick to the cycle paths that thread their way through the housing estate. All was going well until I approached the field (not far from my home) which is on a steep incline and I made a fatal mistake but one which had become intuitive to me since I started cycling. I stood up to gain extra leverage and as I did so I leaned forward to remain in an upright vertical position – BIG mistake! My centre of gravity shifted and suddenly my arms bore the full weight of my body. Immediately my arms collapsed under the load and the bike and I parted company as gravity took over. I hit the ground hard but cannot remember exactly how because it all happened so fast. The first thing I was aware of was a pain in my chest and struggling for a few seconds to breath. I had hit my chin against the pathway too and in those first few seconds I just lay there trying to collect my thoughts as all sorts of horrible scenarios flashed through my mind. Had I broken any ribs, had I punctured a lung, had I lost any teeth? I nervously ran my tongue over my teeth – everything seemed okay, nothing missing and no taste of blood. I ran my hands across my ribs but there were no sudden pains and nothing felt abnormal. I looked around for evidence of blood but there was none. So nothing immediately visible except for some grazing on both knees, hands, chin and left cheek although I still had some pain in my chest from hitting the deck so hard. Phew!

So that brought my first cycle ride of the year to a very abrupt halt. All the walking I’d been doing lately had lulled me into a false sense of security. And although it hurt quite a bit at the time I had been fortunate that I had suffered no major damage. I had managed to walk away with superficial grazing and some bruising which is now slowly fading. I had some slight pain in my chest for a couple of days perhaps from some pulled muscles but everything is gradually getting back to normal – whatever that is these days. One thing’s for certain, it sure hurts hitting the ground! As children we seem to be forever taking tumbles and yet we just seem to bounce right back as if made of rubber. But the older we get the more ‘rigid’ and frail we become. Ouch! Wouldn’t want to repeat that again! Naughty arms!

So I took a tumble and no doubt it won’t be the last. With muscle wastage comes unpredictability: hands can suddenly loose their grip, arms can fail to remain in an upright position, feet can drop causing a person to trip, and legs can suddenly fail to support, leaving a person crumbled on the floor. I think when my legs start to show signs of failing I’ll have to go round the house and bubble-wrap all the hard edges :-).

Apart from the physical hurt I’m feeling a bit down because I really had hoped that the bike would allow me to extend my travel radius and get out into the countryside a bit more, at least long enough to be able to enjoy some of the summer. I was so looking forward to it but it doesn’t look very likely now as the risks involved are too high should my weight shift suddenly in a way that I cannot compensate for quickly enough such as going down a steep hill with all my weight leaning forward. If my arms collapsed then…well it doesn’t bear thinking about. At least this time I had the sense to keep to the cycle paths. I suppose I could fit extended reach stabilisers like some bizarre form of land-based catamaran :-).

And just think, had everything gone smoothly then in a month or two I would have been publishing a blog entry called ‘saddle up!’ instead of this one. Oh well such is life…

So it looks like I’ll live to fight another day or as James Bond said in one of the recent movies ‘Die Another Day’ ;-).


Last day at work

Yesterday I reached a milestone in my life – at the age of 47 I have taken early retirement, not so much by choice but because of disease progression and also because the company is closing the site where I work. In my (almost) 34 year working life (I started working at 14 in a corner shop at the end of the road where I grew up) I have only ever been out of work for two weeks. It will feel very strange this abrupt termination of one of life’s routines. It’s also a reminder that the disease has won another victory and cheated me out of a future.

For the past eight years I’ve worked at Eli Lilly, the American pharmaceutical company, which as it happens opened its first overseas manufacturing plant here in Basingstoke in the UK back in 1939 (the day after war broke out). Having been a resident of the town practically all my life (I was just a few months old when my parents moved down from London as part of the ‘overspill’ in 1960) I grew up thinking of the company as ‘that white building on the hill’. Even today where I now live on quite high ground, I can look towards town and the eye-catching building still remains a prominent feature of the surrounding landscape.

The striking features of the original Eli Lilly building at the Basingstoke manufacturing site

Eli Lilly have always had a good reputation with the town and have been regarded as one of the major employers. I considered myself extremely lucky when I was offered a contract position back in the spring of 2000. But like so many people brought in for a specific task (in my case to help implement a new computerised maintenance system) I only imagined myself to be there for a short while, although I hoped that it would be much longer. After all, I reasoned, what could be more secure then a position in a company that manufactures medicines and has been part of the town’s landscape for so long? But the pharmaceutical industry is of course just as susceptible to fluctuations and competition in the market as other industries. It was a sad day when the announcement to close the site was made in the summer of 2006.

But from the time I began working there it became obvious that the company was indeed a good fit for me. I had come from a much smaller company and so it sort of felt a little like moving from the countryside to go and work in a big city. But what impressed me most was that despite the size of the company it had somehow managed to retain a feeling of working for a much smaller family company. Instead of a cold, clinical ‘I don’t have time to talk or explain to you’ sort of attitude, it was very much a friendly and helpful atmosphere. And despite being a contractor for the entire eight years I was never made to feel like an outsider. Eli Lilly seem to treat everyone alike. To me this is all very important because we spend the largest part of our waking lives at work so it would be a crying shame to waste so much time in an environment that makes us unhappy.

Since my health problems started to impact daily activities late last summer, I’ve been amazed by the amount of help and consideration shown by my friends and colleagues at work. I’ve had people take on some of the tasks I would normally have done, file things away for me because I can no longer reach up, fetch me drinks, open doors, carry plates of food, brought me into work and took me home again when I had to give up driving, took the time to listen and to give friendly and helpful advice, and were patient with me when things took a little longer as I started to slow down. I consider myself extremely lucky to have worked with such a group of kind, considerate, helpful, friendly and caring people. So to all my friends, and in particular; Bill, Carry, Kim and Jane, who have done so much for me to help make my last working months so bearable, I offer you my heartfelt gratitude. Thank you so much for everything! I will miss you all!

So now I will begin a new chapter in my life. The worry I have at the moment is that I may start to feel socially isolated and without purpose now that I have stopped working and am no longer part of a team. When I was at Eli Lilly it always felt good to know that I was working for a company that enhances the quality of human life. Sure, I wasn’t at the ‘coal face’ actually making the medicines but in such an intricate operation there are many interdependent links and I was very happy and indeed proud to be a part of it. I’m so sad to see it all end and it’s been very difficult for me to hear all the people around me talking about job interviews and job offers and knowing that they are on a road that I cannot follow. I’ll just have to hope that there is some truth in the old saying ‘as one door closes another one will open’ (to new opportunities and possibilities). Fortunately I am the sort of person who has lots of interests and doesn’t get bored so I’m sure I’ll soon find things to occupy my mind and keep me active.

March has been the worst month so far since being diagnosed. In a matter of weeks I have lost the ability to drive a car and the ability to financially support myself, both of which I’ve been able to do all my adult life. In addition the disease has continued to progress down my arms into my hands and fingers making many tasks difficult and time consuming. I’ve been using up a lot of energy preparing for work each morning and by the time I left the house I would be feeling exhausted. I suppose at least now I’ll be able to relax a little more and take things a bit slower. But the cost of doing so is high.

I really do believe a positive attitude helps with this disease and it is for that reason why I am treating this as ‘early retirement’ rather then ‘stopping work’ and waiting for the end to come. I also believe that laughter is the best medicine because life is so short even without illness. In fact I’ve often heard it said that it takes far fewer muscles to smile then to frown so perhaps happiness is a lazy person’s emotion – an important point for me to remember just in case the disease ever spreads into my face – in which case I’ll be going around with a perpetual smile!

I’ve decided I’ve had enough of these troublesome motor neurones. I’ve looked after them all these years, gave them a home, put a shirt on their back, found them a job and this is how they repay me. They’ve turned on their master! Well I’ve worked out exactly where they hang out and I’ve already told them in no uncertain terms ‘I know where you live!’ I’m just waiting for that new superstore ‘Brains R Us’ to open and then I’ll be straight down there for a brain swap-out!

So what do I do in the meantime? Well I’ve been thinking about going into research myself. I thought if maybe I took a different approach I might have more luck then all these multi-million dollar efforts – in fact I’ve already made a start. I’ve bought a chemistry set in Toys R Us and some hamsters at the local pet store. We’re not going to mess about because time is precious so I’ll jump straight to the animal trials and we’ll see exactly how many of those hamsters really are guilty! 🙂


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End of the road

This week saw the disease progress to a new level and has effectively ended my days as a motorist!

For some time now I’ve been experiencing a steady decline in upper limb strength and energy levels. Driving the car had become a tiresome task and although it is fitted with power steering it often didn’t feel like it. Manoeuvring the car in tight spaces was starting to become very energy intensive and would leave me feeling slightly weak afterwards. I’d had a steering wheel ball fitted a while back in an effort to prolong my ability to drive, and for a while it did seem to make driving easier and offer hope that I could stay independently mobile. However, more recently it had become obvious that this was only ever going to be a short term fix and I knew that this was going to be the last year I would ever drive a car myself.

Earlier in the week as I reversed the car off the drive and began to straighten up and pull away, my arms became so weak from the effort of turning the wheel that they effectively stopped working altogether and ceased to respond to my commands. The best I could manage was to move them tiny amounts albeit with a strange and uncomfortable sensation of resistance. But this left me in a predicament as the car’s engine was on and in first gear. The only reason I wasn’t moving was because I had one foot on the brake pedal whilst the other was holding the clutch pedal down. I was unable to stretch my left arm out enough to reach the gear lever to take it out of gear, whilst I was equally unable to reach out with my right arm to turn off the ignition! Quite frightening really as you can well imagine. Fortunately I was in a close not on a main road. Nevertheless I was still blocking the road and would eventually be preventing my neighbours from getting to work. It seemed that the more stressed I became the less my arms responded.

Well eventually some strength seeped back into my arms and I was able to guide the car very slowly over to a visitor’s parking bay and switch the engine off. But the whole stressful episode had left my arms so weak that I was unable to raise them up sufficiently to put the key in the lock of my front door, effectively locking me out of my own house for a while!

Fortunately I have a very good neighbour who was not only kind enough to park the car back on my driveway but was also able to give me a lift to work. And in the evening my boss kindly drove me home. Thank goodness for friends.

The whole frightful episode that morning had left me quite shaken as I had not experienced anything like it before. And to think that this is probably only a small foretaste of things to come. Gulp! It sends shivers down my spine just thinking about it.

I will take this as a serious warning. It would be foolhardy, reckless and downright irresponsible of me to continue driving now knowing full well that the disease has reached a point where my arms can be subject to these ‘paralysis attacks’ which deny me all control of my arms for a while. And as I’ve mentioned already this seems to be connected in some way to stress levels too. The more stressed I become the worse it seems to get.

I suspect that this little episode was closely related to all the energy I expend each morning just preparing for work. My upper arm and shoulder muscles (already quite badly atrophied) became so exhausted that they effectively shut down for a while. Obviously I now have little in the way of reserve energy and it would seem that energy replenishment now takes some time.

It’s all so frustrating. I had hoped to be able to get to the end of my working life fully mobile and maybe even get a couple of months or so of freedom to drive and visit places I’d not yet been to. Unfortunately I have fallen at the last hurdle – and so close too! Worryingly it was only four months ago that I was diagnosed although I had tests for several months prior to that, and had symptoms a few months prior to that. I wonder if this would be described as an aggressive form of the disease or is this just typical of the rate of spread? It was the one question I meant to ask the Neurologist recently and forgot.

The car is now sitting on the driveway awaiting its fate and it will sadden me to see it go. I’ve had the car since new, regularly maintained it, put much lower then average miles on it and never been let down by it. But because it is now coming up to nine years old it is worth a lot more to me then someone else – and yet it still looks new.

I’ve been driving since my college days when I was 17 (practically 30 years ago) so motoring has become an integral part of my adult life. Loosing that ability is in a strange way like loosing a part of myself – if that makes sense. Here in the industrialised West we are very much a mobile society and jumping into a car has become second nature to us all. I will miss the spontaneity of waking up on a weekend, peering through the curtains and seeing the sun shining and deciding on the spur of the moment to drive off down to the coast for a walk along the cliff tops at Lulworth, or to take a walk around the beautiful gardens at Wisley or any one of hundreds of other places. Or just simply to jump in the car and go visit family. Now my options have decreased and I will loose that door-to-door advantage that cars offer.

As a form of compensation (and bizarrely right at the moment I need it) Adult Services have (with my approval) now added me to the Hampshire County Council Disability Register. What this means is that I am now entitled to various concessions amongst which is free travel on the buses. So yesterday I applied at my local council offices for a free bus pass which I was able to use that evening to get home from work. From April the bus pass scheme goes nationwide so I will be able to use it anywhere in the country and not just in the borough. So at least I will have some way of getting around because without the car it will start to feel like my world is contracting.

I’m afraid that the disease has won this particular battle, but there will be others and it has not yet won the war. There might only be three wheels on my wagon these days but I’m still rolling along, singing a song… “those Cherokees are after me, they look mad, things look bad, but I’m singing a happy song. I’m singing a higgity, haggity, hoggety, high, my motto is never say die!” 😉

Just before I sign off I would like to wish all my dear family, friends, colleagues and fellow sufferers a very happy Easter.


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