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!Β πŸ™‚ 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 πŸ™‚


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? πŸ™‚

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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Heading for Autumn (September) – part 2

Calendar entries highlighted in yellow


10th September 2009 – A meeting about the stairlift / An afternoon with Kim / A pleasant surprise

I’ve had my stairlift a week already and I have yet to use it once because of the problems I’ve already written about. This morning I finally had a chance to meet with my OT and members of Liftech and Freelift, the companies responsible for installing and manufacturing the stairlift. With me sitting on the stairlift at the top of the stairs I was able to demonstrate to them how unsafe it would be for me to try and stand up with the chair still in the stairwell and my right foot half over the age of the landing. Various solutions were discussed such as raising the height of the top step so that it was parallel with the landing, and building a barrier on one side of the banisters to prevent me from falling down the stairs when reversing back into the chair. None of these half measure solutions appealed to me and I was quite firm in telling my OT that there was no why as I was going to walk backwards and attempt to sit in a chair that was not even on the landing and without the use of my arms to steady myself. The solution we’ve come up with is to extend the curved track by another 350mm so that the chair is on the landing. This additional space should also mean that I will need to pivot the chair less and so it will feel more like I am backing up along the landing rather than off the stairs. The only problem is that the extended track will partially obscure a doorway leading to my study by about 6 inches. Hopefully it will be visible enough to prevent trips. If not we’ll have to erect some kind of guard or barrier for the carers who go into the room to dry clothes so they don’t trip and hurt themselves. I’m told that the extended track can be fabricated in this country (unlike the original curved track which was fabricated in Holland) and that the work should take about two weeks.Β 

The other problem with the stairlift is being able to control it in a ‘hands-free’ fashion and so far the solution they’ve come up with is to use several switches; one mounted on the stairlift itself and one mounted on the banisters. I’m still not convinced about this and have concerns regarding the fact that the switches are battery operated and send a wireless signal to the stairlift. I’m worried about the battery dying whilst I’m using the stairlift and then being stranded. This one still needs some further work.Β 

I spent a very enjoyable afternoon with Kim, the newest member to my care team. It was all a bit unexpected really, I got a phone call from the care agency early this morning when I was still in bed and unable to pick up the phone (although I could hear the message being left on the answerphone) to say that Kim was available this afternoon and would I like to spend some of my social hours with her? Well I’ve been stuck indoors so much lately that I’m starting to get cabin fever and the weather has been so nice this week that I’ve really felt frustrated that I cannot go anywhere on my own. Needless to say I jumped at the opportunity so just after midday Kim turned up and bundled me and the wheelchair into her car and we set off for Alresford, the picturesque Georgian town about 30 minutes away. After parking the car and seeking directions from some local market traders we headed for the Millennium Trail, a series of footpaths around the town, part of which is a very delightful riverside walk with overhanging trees providing some nice shady areas. We marvelled at the clarity of the water and the size of some of the fish, and enjoyed seeing so many ducks and swans gracefully swimming by. It really was such a peaceful and secluded area and yet so close to the town’s high Street. Further along the riverside walk we encountered Fulling Mill, a timber framed thatched cottage straddling the river Alre which looked like something out of a jigsaw puzzle. We both stood there admiring it for some time envious of its location whilst enjoying the lovely afternoon sun. Unfortunately (although not for me, he he) the walk ended with a rather steep incline back towards where we had parked the car and I could hear poor Kim breathing rather hard. Strange really, because I didn’t feel worn out all, in fact I could have done it all again :-).Β 

On the way back home we stopped off at The Grange, near Northington, a partially restored stately home surrounded by farm fields and a river which has now been taken over by an opera company but is still open to the public. Not somewhere you would particularly want to stay very long as you can only walk around the exterior but quite nice to see if you like architecture and just want to enjoy a peaceful break from driving for a while. Anyway it capped off a very pleasant afternoon. The weather had been extremely kind and I had really enjoyed Kim’s company. This had been the first time that we had spent some social hours together and already I was looking forward to the next one which hopefully won’t be far off. I have a very good feeling about her and I think she’s going to become an invaluable member of my care team. Thank you Kim for taking good care of me.Β 

I had a nice little surprised today when I checked my e-mail, there was a message from Ruth, my MND Association Visitor who had left England to live in the States with her family. I really hadn’t been expecting it and I felt touched that I should still be remembered. But such is the power of modern communications that in this day and age there is no real reason for people to lose contact. Anyway it was really nice to hear from you Ruth and I’m glad that you and your family are settling in and making new friends. Good luck with your US driving test and a hope the move to your permanent new home goes smoothly for you.Β 

12th September 2009 – A visit to Eastrop Park

I’ve been a bit spoilt this week for trips out of the house. This morning after breakfast Francesca took me to Estrop Park for a walk around the boating lake and park area. Well to be more accurate she was walking and I was taking it easy in my wheelchair which is becoming a regular occurrence as my legs weaken. It was a little chilly to start with but gradually warmed up. We stopped by the lake used for model boats and watched a father and his young son playing with their radio controlled trawler. Suddenly I got an attack of the giggles as I imagined what fun it would be if the lake was full of model boats whilst proud parents and their children stood by the water’s age with control units in their hand guiding their boats around the lake. Suddenly the boats begin to disappear below the water one by one whilst parents and children look on with puzzled expressions. Suddenly up pops a periscope followed by the familiar outline of a World War II submarine. And there’s me sitting in my wheelchair with a radio control unit in my hand and a wicked grin on my face saying ‘next victim, please’. I know, I’m bad, he he smile_devil.Β 


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Heading for Autumn (September) – part 1

Calendar entries highlighted in yellow

1st September 2009 – New registration day

My brother and his wife called round at midday proudly showing off their brand-new car that they had just been and collected from the garage. It’s a Mazda 3 and looks superb in its high gloss black finish. I’m already a big fan of it not just because of the way it looks or its high specification, but because it has height adjustable seats which makes it a lot easier for me to get out of. As I walked around the car studying all the nice little design touches and admiring the well laid out interior I felt a pang of regret that I could no longer drive such a car myself. Still, at least I can enjoy being a passenger.

Proud owner...and envious brother πŸ™‚ (photo courtesy of Chery)

Chery getting comfortable in β€˜her’ car! (photo courtesy of Chery)

2nd September 2009 – More tests

I spent the day with my aunt and uncle who had kindly offered to take me to the Southampton Hospital for some respiratory tests in the afternoon. This time I decided to take my wheelchair with me as I was not feeling too strong today and wanted the reassurance of having somewhere to sit in case the walk from the disabled car park and then through the hospital to the first floor proved too tiring for me. We spent half the afternoon in the Respiratory Centre but most of that was spent in the waiting room either waiting for tests or waiting for the doctor. Despite last time hinting that I would have a full set of tests the next time I came I was surprised when I was subjected to only a few of them. At least I didn’t have to have an arterial blood/gas test which can be a bit painful. Anyway the good news is that there does not appear to be any further deterioration in my respiratory muscles compared to last time. I think this surprised even the doctor a little especially after the dramatic fall the previous time. Therefore she feels that there is no need for any form of intervention at this time and after discussion we’ve agreed that I will only contact her if my situation changes i.e. when I start to experience problems sleeping. We talked a little about non-invasive ventilation and I asked her if before we went down that road could we try altering my sleep position so that my head and chest are propped up a little as I understand that it is far more difficult to breathe when lying horizontally compared to standing up. She agreed and said that that is all that some people require to improve their breathing. So this is what I shall do as I am in no rush to have strangers sleep in my house each night which is what would be required as a condition of the hospital providing the ventilation equipment. As a personal target of my own I want to get through the remainder of this year breathing unassisted.

The other subject we touched on was PEG. I’m consciously aware that there is a narrowing window of time for this procedure to be safely performed should I wish it and today I wanted to seek the advice of a respiratory specialist to see how much longer I had to make up my mind. The answer, that I need to make the choice now, doesn’t really come as a surprise at all as my breathing is already less than 50% of predicted. I explained my dilemma and said that so far I had exhibited no bulbar symptoms i.e. I could still talk perfectly normal and had no problems swallowing food. Considering all the weakening in my breathing muscles that I was experiencing, it seemed at least to a layperson like me that I was more likely to suffer breathing issues before speech or swallowing became a problem. I was therefore leaning quite heavily in the direction of saying no to having PEG fitted as for the foreseeable future it would be something that would have to be constantly maintained each day and yet never used. Having a PEG is a way of delivering food (or medication) if you cannot take it orally, but it is still not a guarantee that you will not lose weight or be prevented from choking. In fact it adds the additional complications of possible infection. I just feel that having a PEG fitted and seeing a plastic tube dangle from my chest would make me feel like I have reached a certain milestone in disease progression despite showing no signs of deterioration in my appetite or ability to eat. From what I could tell the doctor seemed to agree with my train of thought and could tell just from talking to me that my speech was not affected and indeed may never be or at least not until the late stages by which time I’ll have other things to worry about. At the end of the day it’s a personal decision and to some degree it is a gamble. I’m gambling that I’ll suffer respiratory problems before the disease progresses to my throat. But then again all life is to some degree a gamble and it’s important to realise that all the interventions being offered do nothing to alter the progression of the disease. They are only designed to manage the symptoms and to make life more comfortable. The outcome will always be the same.

3rd September 2009 – It’s here! / A new hope

Finally after what has seemed like an endless wait my stairlift has arrived. I was expecting the installation to be a two-man job but in fact just one man, Stewart, turned up and fitted it all by himself in about four hours. I was expecting there to be a lot of noise and dust flying around but he made remarkably little noise and was very clean. The installation has turned out a lot better than I had imagined it to be and blends in quite well thanks to a seat colour that matches my carpet and a curved track that is a fairly close colour match to the walls. The big surprise is that I have not had to give up the decorative hand rail that follows the stairs from bottom to top. Some months ago when I was at the quotation stage I was being told by everyone that it would have to be removed because there was insufficient clearance and yet somehow they’ve managed to design it to work with in place. Splendid!

Now at this stage I’d like to say that I’m now the happy owner of a stairlift that works beautifully and I no longer have to worry about using the stairs. Unfortunately when he was finishing up and starting to demonstrate it to me we hit a major problem. None of his installation instructions mentioned the fact that I cannot move my arms and therefore required a hands-free solution as previously discussed back in June. The chair had a standard joystick mounted in the left arm which I would neither be able to reach or operate due to paralysis and weakness. There was supposed to be some kind of foot operated switch so that I would just need to sit in the chair and press and hold the switch with my foot. None of this equipment had been supplied so the fitter left me with instructions to contact my OT whilst he promised that he would raise the issue with his boss.

So a bit of a disappointment really. They’ve not supplied what we asked for and there is no way that I can physically operate the stairlift in its current state. There are call buttons at the top and bottom of the stairs but these would only be of use when summoning the chair. For the stairlift to work you need to be applying constant pressure to the switch which of course is of no use if you’re sitting in the chair and the switch is mounted on the wall. So at the moment I’m actually worse off than I started because I now have a curved track occupying the widest part of each stair tread forcing me to walk up the stairs using the narrower end of each stair tread. I’ll have to be extra careful when using the stairs now.

I spoke to Marion, my OT, this evening to put her in the picture. She’s been in touch with the company fitting the stairlift and has arranged for them to call me tomorrow as a matter of urgency.

I had a phone call this morning from the home care manager of my care agency. She was calling with the good news that a carer that I had identified as being ideal to join my care package has agreed and was prepared to commit to 3 evenings a week plus would be willing to step in and cover for other people in my team as and when needed. So from next week Kim will be put in as the default carer for three weekday evenings every week. Kim brings with her years of experience (unlike some of the people who have been sent to me lately whose experience is measured literally in weeks) and has been with the agency practically since they started. Although she’s not previously cared for somebody with MND she has plenty of experience with MS, another complex disease. Kim is another one of those people like Alison and Francesca who immediately impressed me with her thoughtfulness, attention to detail and pleasant personality. Unlike some of the people I’ve had recently who show little initiative and hover around when I’m eating instead of finding things to do, Kim is constantly looking to see what needs doing. She utilises her time much more efficiently and she certainly comes across as far more professional. So fingers crossed things might actually be starting to improve a little after a bumpy few months.

4th September 2009 – More stairlift problems surface

Tim, a Liftech engineer called early this morning to take a look at the problems I was experiencing in being able to control the stairlift in a ‘hands-free’ fashion. But instead of bringing a rocker switch with him, which is what I thought he was going to do, he removed one of the call switches from the wall and proceeded to experiment by placing it in different positions on the footplate whilst I was sitting in the chair. Trying to position my feet so that they could activate and then hold down the switch for the duration of travel proved difficult. We then experimented on placing the switch vertically behind the footplate so that I could activate it with the heel of my foot. This seemed like an improvement until we discovered that the switch prevented us from raising the footplate when not in use so that it wasn’t a trip hazard for other people using the staircase.

However, an even more worrying concern surfaced when we tested the stairlift and I found that it stopped short of the landing. Even when the chair had pivoted round it still did not allow me to place both feet firmly on the landing. I’m finding these days that I need to brace my legs further apart when standing up to give myself some stability. Trouble is when I try to do this at the top of the stairs when seated in the chair I find that my right foot is protruding halfway off the landing. At the moment I would have no confidence in trying to stand up and lean forward as I know that as soon as I place weight on my right leg it could slip off the edge of the stair tread. With the chair hanging over the stairwell it just doesn’t feel safe. I’d be even less inclined to reverse back into it to sit down knowing that the chair is already in the stairwell.

Marion is out for a few days now so another OT, Claire, called round later in the morning to see and understand the problems for herself. She’s booked a meeting for late next week and arranged for Marion as well as members of Liftech and Freelift to call round my house to discuss the problems. I’m really quite concerned about all this now as it’s beginning to look like they have not fully understood the problems I’m facing or engineered a suitable solution. Even if I had somebody present to operate the stairlift using the call buttons I would still have problems getting off at the top because the stairlift does not deposit me on top of the landing. Interestingly one of the pictures in the brochure clearly shows the stairlift on the landing at the top of the stairs not adjacent to it. In my case there is a limit on how much further the track could extend onto the landing before it obscures a doorway. It will be very interesting to see what they say next week. In the meantime I’ll have to be very careful on how I use the stairs and just hope that my legs continue to hold out.


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