The month of May – part 4

Calendar entries highlighted in yellow

19th May – The day after / The W word

After all the stress of yesterday it was perhaps no surprise that I got very little sleep and yet surprisingly I managed to get through the day without feeling too tired. I was very apprehensive about using the stairs this morning but Ann, my lovely carer who looks after me most weekday mornings, offered a lot of support and helped me get downstairs for breakfast. I must admit it felt a lot more reassuring having someone close at hand as I stepped off the landing and made my way downstairs. For an able bodied person it is perhaps difficult to imagine what all the fuss is about. But when you are faced with the combination of weak legs, reduced upper body strength, and arms that are paralysing and can’t move far from your side, it can make this ‘simple’ task extremely difficult. In fact it’s not a simple task at all; it’s just that the human body normally works so well in processing vast amounts of information at one time and is capable of multi-tasking that it just seems that way. This is why we’ve not yet managed to create human-like robotic systems with the same ability. As the muscles throughout my body weaken I’m gradually losing the ability to make all those subtle subconscious alterations that help maintain my balance.

I made a call to Marion, my OT, this morning to put her in the picture and to emphasis the urgency in getting things done regarding access to the upstairs. At the moment I’m still waiting on two more companies to provide quotes and we’ve still to determine financing arrangements although she’s told me that a Grant Officer will be calling on me tomorrow. We also discussed my weakening legs in general and I have expressed concern about my ability to stand up and walk for more than about 15-20 minutes. I told her that I was starting to give serious thought to buying a wheelchair for when I go out for days as it would eliminate the stress of constantly looking around for somewhere to sit. Yes the dreaded W word is starting to appear on my radar and it’s time to start facing the realities of my situation and accept it no matter how much I would wish otherwise. Sooner or later MND deprives you of the ability to walk and sad to say but the nerves that ‘talk’ to the muscles in my legs are slowly dying. Realistically I don’t expect to be doing much walking by the end of the year so I need to start making plans now. Marion is going to get the ball rolling and sort out an application for me to have an assessment with the Wheelchair Service.

We have a Hearing & Mobility shop not too far from where I live so as part of my afternoon out (mainly to get my haircut) Alison and I took a look inside and tried out a few wheelchairs (I know, depressing!) that would easily fold and could be carried around in a car. I’m not at the stage where I need to live in one but want the reassurance of having one around for when I go out for days as there is no way I can stand for that long. It’s a strange feeling sitting in one for the first time knowing that one day this will be the only way I can get about. Nevertheless we were determined to make the best of it and tried to have some fun as Alison propelled me at breakneck speed around the shop. I came away with some idea of what I found suitable, their cost and availability.

I’ve been trying to rebuild my (now fragile) confidence in using the staircase. My legs feel very weak now and climbing stairs places a further load on them. I know from my experiences with my arms how unpredictable they can be so I’m trying to minimise the risks by only using the stairs when I have to.

I had the folks from Possum phone me this evening to discuss options for linking a phone to the Primo! environmental control unit. I’ve been experiencing problems using my cordless phones because my fingers cannot always move properly or apply sufficient pressure. From what I discovered this evening though it sounds like there are some limitations which would make it unsuitable for my current needs e.g. linking only one handset. Need to look at other options.

20th May – Measuring up again! / The Grant Officer arrives

I had Stewart from Liftech arrive this morning to measure up and provide quotations for a stairlift and a through floor lift. At this stage of the disease a stairlift would be sufficient but eventually my legs will become useless and if I end up dependent on a wheelchair then it would not be practical to attempt a transfer to a stairlift. A through floor lift would be big enough to take a wheelchair but they are rather large and intrusive especially when you allow for door opening clearance. In fact it proved difficult to find a suitable location. The only viable one appeared to be having the lift installed in the garage which is directly below the third bedroom. But the lift and all the clearance would render the room useless for anything else.

Here’s a few scans from the stairlift brochure.

Page scan from the Freelift brochure

Page scan from the Freelift brochure

Page scan from the Freelift brochure

Page scan from the Freelift brochure

Page scan from the Freelift brochure

…And the through floor lift brochure.

Page scan from the Terry Harmony Homelift brochure

Page scan from the Terry Harmony Homelift brochure

Page scan from the Terry Harmony Homelift brochure

I had a visit from Marion (my Occupational Therapist) and Cheryl (the Grant Officer) this afternoon. They had come to do a test of resources (financial means test) as a first step in applying for a Disabled Facilities Grant, and also to discuss what adaptations to the property would be required. I must admit from previous experiences with anything that is means tested I always seem to fail so I went into this discussion with low expectations. Strangely they only seem interested in income and savings not outgoings, oh and I had to provide proof of ownership of the property too. The DFG grant provides up to £30k towards adaptations. The means test will determine how much if anything I will have to contribute.

We looked at the adaptations required and the various options open to us. One scenario involved installing a stairlift now and converting the bathroom to a wet room with a through floor lift to follow at a later stage. Another scenario considered converting the garage to a combined wet room and bedroom but was ultimately rejected because of size limitations. The solution I favoured most was building an extension on the back of the house that would incorporate both the wet room and a bedroom. I was a bit surprised to find them so amenable to the idea but it would certainly make life a lot easier as I could effectively live on the ground floor and avoid all the hassle of lifts. It would also be more suitable for future arrangements if one day I should need a live-in carer.

Got a phone call from Cheryl late in the afternoon to notify me of what my contribution would be (assuming I get a grant).

I’ve noticed recently that I’m having difficulty shrugging my shoulders. This is making it even harder to use my arms – or get comfortable. I’m becoming locked inside my own body, a truly frightening thought.

21st May – Advanced Directive

Lara, my palliative care doctor from St Michael’s Hospice dropped in this morning for an important discussion. I had asked for her help in how I could set up an Advanced Directive (also known as a Living Will or an Advanced Decision to Refuse Treatment). It’s one of those things that I don’t need right now but just want to get in place whilst I have the energy and determination to pursue it. An Advanced Directive will allow me some control over how I’ll be treated should various scenarios present themselves. Although it cannot be used to demand a particular treatment it can at least specify those that you I will not accept. The Advanced Directive only comes into force if I become incapacitated and unable to communicate my wishes. At all other times my own verbal instructions (or other forms of communication should I lose the ability to talk) take precedence. The document is legally binding but does not need to go through a solicitor, only the medical profession.

The Motor Neurone Disease Association have produced a very good information pack and this provided the basis of our discussion. We talked about such things as cardio-pulmonary resuscitation, assisted ventilation, artificial feeding, use of antibiotics, and where I would wish to be treated. Lara explained to me the ramifications of saying yes or no to each of these scenarios so that I would understand their implications and be able to make an informed decision. Heavy stuff but at least it gave me the feeling of being in control. Once I’ve written it out (or more likely have someone else do that for me) and had it witnessed and signed off by the medical profession then copies will be circulated to the various parties concerned such as my GP, hospital, hospice etc. It’s important to bear in mind that an Advanced Directive can be changed at any time and having discussed it already with my doctor we have agreed to set regular review dates so that I have the opportunity to amend it as my circumstances change.

‘Gavin the Gardener’ has returned! This week he’s tackled some of the weed infested borders that used to look so neat and tidy with their covering of pine chip bark. Now weeds have exploited every gap and dormant seeds have broken through so that you’d be hard pressed to even see the borders although by the time Gavin had finished this morning they looked noticeably tidier.

I received my latest piece of disability equipment this morning – a raised toilet seat! Because my leg muscles are weakening I’m finding it increasingly difficult to actually get up from sitting on the loo so Marion (my OT from Adult Services) arranged for me to have a clip on toilet seat that increases the height by about 4 inches. This has made a big difference. Another little problem solved.

I spent the remainder of the afternoon working on my old desktop computer editing some of the photos that Francesca had taken on our last trip over to Black Dam so that I could use them in a blog post. I struggled badly trying to use the mouse and even simple photo edits became frustratingly slow. Normally when I use my laptop computer I just have a track pad to contend with but this is not the most suitable input device when using software to edit photos.

22nd May – Bits n pieces

Had a bit of a shock this morning when I woke up to find a stranger in my bedroom. Ann, my usual carer for this time of the week had gone to a funeral and had told me that Ria would be covering. But it wasn’t Ria standing over my bed but a complete stranger. I was none too happy that the care agency had not even bothered to notify me in advance and it felt distinctly uncomfortable having someone I’d not met before do my personal care. This is the first time my care package had failed this year, and by that I mean that none of my existing care team was able to cover the call.

Cheryl (the Grant Officer who called on Wednesday) dropped in this morning with some paperwork for signing so that we can get the application for a Disabled Facilities Grant Underway. I had major difficulties signing my own name. I just can’t seem to hold a pen anymore. I found myself continually apologising for the state of my writing which is now atrocious. The good news is that we are going ahead with the proposal to build an extension at the back of the house that will incorporate a bedroom and bathroom. I’m so relieved about this as it will save butchering the garage, 3rd bedroom and bathroom, and will avoid the need to go upstairs. However, this won’t happen overnight and will take six months or more (assuming I actually get the grant). Because of the progressive nature of the disease I have asked Cheryl if there is anything we can do to fast track it. In the meantime a separate application will go through for a stairlift as an interim solution to getting upstairs. On hindsight I should of applied for this grant at the start of the year. Oh well, live and learn!

Phoned up a company called CommuniCare to enquire about a pendant alarm in case I fall again and need help. I’m starting to feel a bit vulnerable and want to explore what options there are for calling for help as I am on my own most of the time.

Richard from Remap called this afternoon with another little home grown contraption that will make life easier. This time it’s a foot pedal designed to make flushing the toilet easier as I no longer have the strength in my arms to push the handle. I lost that ability some time ago and have been using my foot to kick it but balancing on one leg ‘stork fashion’ is now too risky.


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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 month of May – part 2

Calendar entries highlighted in yellow

10th May – Photo shoot – take 2! / Time on my hand?

We’ve had gorgeous weather again today and my newly appointed staff blog photographer, err I mean Francesca, took pity on me treated me to another trip down to Black Dam to feed the birds and to prove that last week’s photos were no fluke. There was hardly a bird in sight when we arrived but as soon as Francesca began dishing out the bread in muck spreader-like fashion, birds appeared from all directions to ambush us. One in particular was brave enough to actually take bread from Francesca’s hand. I really wish I could have taken some photos myself to show you but at least I have some lovely memories of the occasion and Francesca herself managed to get some nice pictures once again of us both which you can see for yourselves below. Thank you again Francesca and for all the little things you did for me at the weekend (like changing the batteries on my wireless keyboard and connecting/disconnecting USB hard disks so I could back up my data). They may all seem like trivial things but mean a great deal to me and help keep me ‘operational’.

Francesca and I at Black Dam

Still standing! At Black Dam

At Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

I spent the afternoon editing some of last week’s digital photos ready for posting on this blog. I normally enjoy playing around manipulating images but that pleasure was mixed with a lot of frustration this time round as I struggled to control the mouse. At times all I could do was stare at my immovable arm waiting for some energy to flow back into it. It was painfully slow getting anything done today but persistence won out and I’ve finished the first batch. I’m quite pleased with them too.

Want another example of how well my carers look after me? Francesca dropped in on her way home this evening to deliver a surprise gift from her shopping trip – a foam pillow that will provide better comfort and support at mealtimes when I’m sitting in my wheeled chair. How thoughtful and kind is that?

I’ve just got through a whole week of not wearing a wrist watch which seems a very strange thing to me. Putting a watch on in the morning had become part of my daily ritual but lately even something so simple as a watch has not been without its difficulties. I have a very old Seiko watch that my dad got me around 30 years ago which I’ve hung onto not just because it’s a good looking watch but also for sentimental reasons. It is a purely mechanical watch with an automatic winding mechanism that depends on wrist and arm movements to keep itself working. Trouble is of course my arms don’t move much during the day so the watch soon stops working. That coupled with the fact that I’ve been struggling to release the clasp in the evening has led me to try and get by without it, after all the house has plenty of clocks scattered around (all reading different thanks to each room being in a different time zone 🙂 ). Looks like my Seiko has become just another relic of a life I used to lead.

11th May – A review of my care package

It’s been quite a day! I’m writing this late in the evening and I’ve still got a bit of a lingering headache from midday. Whether that’s from a weakened respiratory system (CO2 build up) or just all the stress lately I don’t know. But I do know I’ll be glad to hit the hay soon!

I’m trying to gradually transition into a higher level of personal care, partly to minimise the shock and the feeling of losing control, and partly because quite frankly all my strength is slowly seeping away so I need to preserve what I have left to help get me through the day. Just trying to get up and dressed has become so exhausting lately that I have started to welcome the idea of help with it. Yesterday for example I wasted so much precious time and energy just trying to put a jumper on whereas today with help my shirt was on in moments. My days of dressing myself are numbered…

Alison (my carer) offered to take me grocery shopping today. Usually it’s my brother, Jason, who is kind enough to do my weekly shopping, but Alison thought it would be a good idea to have a look around the supermarket myself and try some new things as my diet has become a bit samey lately. I must admit though I was a bit apprehensive about going shopping with a woman and was not too sure if my debit card could stand the shock, haha! But it was okay and my card is resting comfortably now having been given an infusion of funds 🙂 Although I enjoyed the chance to get out and buy some different things I must say that walking around all those aisles left my legs feeling weak. By the time we reached the checkout it was time to take the weight off my legs so I left Alison to pack whilst I sat on one of the nearby rest chairs.

At midday I was joined by Rachel (my Social Care manager), Debbie (Homecare manager for the care agency I’m with) and Alison (one of my main carers) who had all convened at my house for a review of my care package. I tend to have these reviews fairly frequently because of the progressive nature of the disease and Rachel’s desire to keep on top of things. This particular one came about because of all the difficulties I’m now starting to experience and also to discuss the implications of my recent respiratory tests down at Southampton. Since last October I’ve been chugging along on 14 hours of home care a week which initially was about right for my needs as well as meeting my desire to maintain as much independence as possible. In all that time the only change has been the addition of a couple of hours of social time which allows me to get out of the house in the company of one of my carers. But the additional personal care I now need has meant that my carers are struggling to fit everything within the allotted time. In fact to be honest they often end up staying longer. So today we’ve been discussing the tasks that need to be performed so that Rachel can build a case that she can take to the NHS for funding approval. We’re also going to try and get funding for a short midday call, something I don’t have at the moment. Knowing Rachel I’m sure I’ll hear one way or the other fairly quickly.

We also discussed the implications of needing NIV (Non-Invasive Ventilation) at some point in the future and how the care agency would handle that scenario (remember I mentioned a couple of posts ago that a condition of having the equipment is that there is someone on hand trained in its use at all times). Should it come to that then a sleep-in call service could be provided. This is different to a night call in that the carer will also be asleep but is on hand if an emergency arises. I believe though that with this service the carer can only be woken a set number of times during the night.

As my care package increases in complexity and resources it will become more difficult to administer. There will come a point when the amount of hours needed to support me in my own home will grow so great that there will be a strong argument to replace the team of carers I have with a live-in carer. I’m very happy with the people I have and have grown to know them very well and they in turn know what I like. I would hate to lose any of them but maybe one day when I am in a far worse condition it may sensibly be the only option because I would not be safe on my own. Let’s hope that that time is still some way away.

12th May – Measuring up!

I had Kevin from Liftability call this afternoon to measure up and quote for a stairlift. Two years ago the thought of me needing one of these would have seemed ludicrous but now it’s a matter of inevitability. At this moment in time I can still navigate the stairs but the signs are already showing that one day this may not be so. As with all things related to MND it helps to think proactively (I just don’t always take my own advice!).

I always thought that stairlifts were only suitable for straight staircases but not anymore apparently. They can fit them to stairs with corners and even to spiral staircases. My particular staircase has two 90 degree bends so I would need a curved track stairlift which is considerably more expensive then a straight one and because of their bespoke nature have little resale value. Apparently my stairs are nice and wide so installation would be relatively easy and could be done in about half a day. Liftability, who don’t actually manufacture the stairlifts, would recommend a Stannah on a duel track with a powered pivoting seat for my situation. Measurements were taken of my staircase but I’ve been told that if Liftability get the order then they will need to come back and do a photographic survey before sending the details to Stannah for manufacture. Lead time is about 4-6 weeks.

Here’s a few scans from the brochure.

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

13th May – Training day / Computer woes

I’ve given up on trying to dress myself. I spent ages yesterday struggling with socks and underwear whilst short-sleeved shirts have completely defeated me. By the time I have most of my clothes on I’m exhausted and the day hasn’t even begun. I took the easy route today and waited for Ann to arrive who then washed, shaved and dressed me. At least I managed to preserve more of my precious energy.

I had Margaret, the community physiotherapist call round midday to instruct all my carers in some techniques for exercising my arms. It was the first time Alison, Francesca & Ann had met up together although as time goes on I’m sure they’ll be working on double-ups when lifting and handling me becomes necessary. The session went very well and I’m afraid that I couldn’t let the moment pass without a stream of comments designed to embarrass or make my poor long suffering carers laugh. As Alison said, there’s nothing wrong with the mouth! Under Margaret’s supervision each of my carers were able to practise lifting and positioning my arms in various ways that will hopefully maintain the full range of motion and suppleness of the muscle tissue. They were also shown some techniques for combating cramp in my feet which I occasionally get and which can be quite painful.

My hands continue to give me problems. Today I had difficulty just using the cordless phone to take a call. I couldn’t even find the strength to press the buttons to pick up the receiver and switch the hands free speaker phone on. And throughout the afternoon my typing speed dropped considerably as my fingers tired and became unresponsive. By the time Alison arrived for my evening call my arms too had grown very tired and I had to enlist her help in moving some large files via flash drive between computers. Thanks, Alison.

Aside from the disability problems accessing my computer I’ve also had technical problems to deal with. A few days ago I updated Microsoft Office 2007 to Service Pack 2. We’re encouraged to do this to maintain the product’s security, fix bugs and even gain new features. The trouble is that sometimes fixing one bug just introduces another one. I discovered today that inserting pictures into files and saving them in Word 97-2003 format now creates files many times larger than previously and saving them in the new docx format crashes Vista completely. I wasted half the morning trying to recover from these crashes. On hindsight (which is a wonderful thing) perhaps it would have been more sensible to hold fire on the upgrade for a while and wait for feedback from the user community.


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The month of May – part 1

Calendar entries highlighted in yellow

1st May – Time rushing by

Hard to believe it’s May already. Time sure is rushing by. I’ve decided this is going to be a ‘make it happen’ month. I’ve got a number of things I really ought to be sorting out but so far I’ve managed to evade doing them, partly because they’re so depressing and partly because they will swallow up precious time I would rather use for other things. I’m just going to have to give myself a not so gentle push otherwise they’ll never get done.

Corresponded with Lara, my Palliative Care doctor, who’s been asking if I’d reached a decision yet regarding having a PEG fitted. I’ve written back to say I haven’t although I’m leaning in the direction of not wanting to have it done at this stage because in the 2 years+ I’ve had the disease I’ve never exhibited any bulbar symptoms. My speech and swallowing remain as they always have. I’m really uneasy about having an invasive procedure at this stage when I know it will be something I would have no use for in the foreseeable future. The disease is not spreading that fast in me so I believe I will get plenty of warning before I was to lose the ability to eat. I’ve also asked if we can arrange a meeting to discuss setting up an Advanced Directive (living will). This is something I really do want to get in place but need someone to explain to me the implications of saying yes or no to the various scenarios that could occur in the later stages of the disease.

I’ve been working on my blog site for most of the day turning the front page into a resource centre. What sparked this off was discovering a few days ago that Microsoft have integrated their online bookmarking ‘Favourites’ application into their Windows Live suite of Web services (specifically SkyDrive). What this has meant for me is that I’ve lost all the tags I painstakingly created throughout last year which helped me keep all my MND related web pages organised. I’ve also lost the ability to include my shared bookmarks in my blog as the Favourites module is no longer supported in Spaces. I’ve therefore taken the opportunity to create a multitude of new custom lists (with links to web pages) on topics such as research and organisations. I actually enjoyed doing this as it engaged my mind and gave me a purpose as well as the thrill of learning something new. I’m really pleased with the way it’s shaping up. When it came to creating a list of other peoples blogs what saddened me was checking the validity of the blog addresses and finding so many of the authors have now passed on. The morbid side of me was thinking that the same will be true of me one day. But at least some of my thoughts, feelings and experiences will live on – that’s the wonderful thing about modern technology; there will always be a little part of me here.

2nd May – Feed the birds (tuppence a bag)

What a lovely morning I’ve just had. Recently I was granted a couple of hours a week of social time as part of my care package. What this means is that I now have the opportunity to get out of the house a bit more and to feel safe in the knowledge that someone is with me. This will become increasingly important as my legs weaken. Up till now it’s been used mainly for walks around the estate or helping me get things done where I need an extra pair of hands. Today though, Francesca came up with the lovely idea of making the most of the sunshine and driving across to the other side of Basingstoke to feed the swans at Black Dam. It’s one of those places that’s almost on my doorstep and yet I never seem to go there. So we grabbed some slices of thick bread, dusted down my camera that’s been lying idle far too long and bundled into Francesca’s car for the short drive across town.

As soon as we pulled into the parking area and I had a chance to cast my eyes around I wondered why I had not bothered coming here sooner. It had an air of peacefulness about it with only a scattering of people spread out across the grass leading down to the water’s edge. Fortunately there were benches dotted around so I didn’t have to worry about being up on my feet too long with nowhere to rest. I’m finding that as time goes by I have to think about this sort of thing more carefully.

Francesca soon got stuck into food distribution duties and before too long had attracted a gaggle of geese. Disappointingly there only appeared to be the one swan around although there were quite a few ducks including a family of young ducklings. I felt frustrated at not being able to use my own camera. Not only have I lost the strength to pick it up and hold it, I’ve also lost the ability to operate the tiny buttons and dials. For someone like myself who used to enjoy taking pictures this is a crushing blow and another example of how cruel the disease is. But I’ve learnt that for every negative I must find a positive to balance it out and I didn’t have far to look. I was in a lovely setting, the weather was gorgeous, and I was in the company of my dear friend who as it turned out proved quite competent with my camera despite her cries of “I can’t take pictures”. Really? The pictures below seem pretty good to me, you kidder 🙂 I thought I was only going to end up with a couple of snaps of me for the blog but was very impressed when she hit on the idea of turning the camera round and holding it at arm’s length so that she could include us both in the shots. Well done, Francesca! I’m still amazed how you managed to get them so well lined up. After today’s demonstration I’ve no hesitation in promoting you to be my official blog staff photographer 🙂 Thank you for a lovely time.

Me and Mr Swan at Black Dam

At Black Dam by the water's edge

At Black Dam

At Black Dam

All smiles! With Francesca 🙂 at Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

What? You wanna piece of me? 🙂

4th May – Frustrating day

For the first time in ages I had a proper lay in and didn’t get up until Alison, my carer arrived. I opened my eyes to find her standing over me (but sshhh, don’t tell anyone, wouldn’t want them to get the wrong idea, hehe). Well it is Bank Holiday and having an extra 90 minutes in bed was wonderful smile_regular

I’m in summer togs at last. I’m wearing one of my newly modified short sleeved shirts that Linda, my friend from the MNDA, dropped off last week. These should be a lot more comfortable to wear with summer on its way, and hopefully easier to put on/take off thanks to the Velcro fastenings. Of course what happens to the weather today after such a lovely weekend? Yup, dull & overcast, light rain and cool temperatures. I think I put a hex on things smile_regular

It’s been a really frustrating day with my hands. I’m having such terrible trouble getting them to do anything. I spent ages chasing sandwiches around a plate at lunchtime because I couldn’t find a way to pick them up. And at breakfast Alison ended up feeding me because my wrists were too weak. Yes I know I have a mobile arm support but it is still limited in what it can do particularly in handling food that can’t be picked up with a spoon. Using the computer this afternoon has been painfully slow as my typing fingers are not responding very quickly. Consequently I’ve not actually achieved much today and as time is becoming ever more precious this has only added to my frustration. I’m going to have to start looking into what sort of ‘hands free’ computing solutions there are out there. I just cannot be without my computer.

5th May – Afternoon with my MNDA visitor

Back to warmer clothes again, hehe. So much for that idea!

My hands are still playing me up and its becoming a real problem if I need to use the bathroom. Quite worrying really. One of life’s basic functions/needs under threat…

I’m tired of looking out the window and seeing the garden go to rack and ruin so I’ve been in contact with someone who’s recently started up a local gardening business and arranged for him to call round tomorrow evening to discuss it. I don’t need a landscape gardener, just someone to do basic maintenance which I unfortunately had to stop last summer.

Ruth, my MNDA Association visitor dropped in this afternoon for our monthly chat. Nothing new to report, just discussing recent appointments.

Had an email message from Marion (OT) to say that she has contacted three companies to come along and measure up my stairs and to provide quotes for a stairlift. She’s also got the ball rolling on an application for a Disabled Facilities Grant so I can expect to be contacted at some point by a Grant Officer. That’s going to be interesting!

Posted a request on the Build-UK forum for information about ‘hands free’ computing solutions. I want to find out how other folks with limited or no upper limb movement manage to use their computers.

6th May – I need a secretary!

Well the phone has been busy today with the various companies that Marion contacted calling me to arrange appointments. Next week’s calendar is filling up already which is going to make it difficult to get out and do anything else. Actually, answering the phone is becoming a bit of a problem. Although I have cordless handsets and keep one by my computer when I’m using it, I cannot just reach out and pick the phone up because my arms are paralysed. The only way I can do it is to push my chair back and stand up then fumble around trying to pick the handset up and press the button to accept the call before it goes to answerphone. I don’t know what I’m going to do when I can no longer use my legs to stand up. Perhaps using Skype direct from my computer to make PC to landline calls might be the answer.

I’ve had a few responses already on the Build-UK forum about ‘hands free’ computing so have some suggestions to follow up on. It’s really useful being able to share ideas like this.

‘Gavin the Gardener’ called round this evening along with his wife to discuss what work needs to be done. They seem a nice pleasant couple who have been doing gardening as a hobby for many years but recently turned it into a business after being made redundant. He’s going to start next Wednesday morning…and not a moment too soon either. I cannot believe how many Dandelions have popped up on my front and back lawn in such a short space of time. Go get ‘em Gavin!

I’ve been following with interest this afternoon the live blog feed of the Amazon Kindle DX product launch from the States. The Kindle is another ebook reader very much like my own Sony Reader except that this new one has a much larger screen which makes it ideal for highly formatted documents such as newspapers and technical manuals. And like the Kindle 2 released earlier this year has access to a vast number of ebooks that completely dwarfs the Sony device. The only catch is you cannot buy it here in the UK. Come on Amazon UK, hurry up and release it here!

I’ve noticed that it is getting increasingly difficult to raise my shoulders, as in a shrug. Looks like the nerves are dying there now. I’m finding it harder to move my upper body and this is particularly frustrating in confined environments like the bed.

I kept myself occupied for the rest of the day trying to come up with a pleasing design for the intro graphic to my latest blog post. But the creative juices were certainly not flowing very quickly today and it took far too long to come up with a relatively simple design although I am actually quite pleased with its clean simplicity.


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Spring renewal

I love the spring. It’s a time of awakening, of rebirth, to feel invigorated with new life…and hope, everything is fresh and clean, brighter and warmer, a re-emergence of colour.

What does spring mean to you? Here are some of my impressions of springtime from recent walks…and pleasant memories.

Carpets of Bluebells

Cool shaded footpaths and dappled sunlight

The rustle of leaves on trees

The powerful fragrance of Magnolia

The abundant display of golden Forsythia

The bright yellow trumpets of sprays of Daffodils

Mass displays of Crocuses

The multicoloured hues of Tulips

The delicate pink of Cherry Blossom

The long lilac tresses of Chinese Wisteria

The vibrant yellow of dandelions & the silvery grey of delicate seed heads

Fields of rapeseed stretching across a rolling landscape

The sound of birdsong in the trees

The buzzing of a bee

The colourful dancing patterns of tortoiseshell butterflies

The drone of a single prop plane somewhere in the distance

The jingle of an ice cream van and the happy faces of children rushing to meet it

Colourful kites soaring high above in skies of blue

The panting of joggers passing by

Families out on their bikes, the children adorned with brightly coloured helmets

Dogs chasing Frisbees

The glint of sunlight on the silver wings of a glider passing serenely overhead

Cycling down country lanes without a care in the world

The smell of freshly cut grass and the whirring of lawnmowers

Sitting on park benches watching the world go by

Golden evenings

Long shadows

Leisurely walks along bridleways

Hot air balloons gliding gracefully by

White cotton clouds and April showers

Mother Nature waking up…


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