Friday, February 26th 2010

Catching up

Okay, while I’ve got a few hours to myself and before my next carer arrives there is just time enough for a little update on what’s been happening this week. I’ve not had much sleep this past week for various reasons including problems with the conveen, and this morning waking up in the early hours with a lot of pain in my lower spine. Being so paralysed I could do very little to alleviate the pain and lay there helpless counting the minutes and hours until Ann arrived. Because I’ve had so little sleep lately I’m feeling really shattered and just don’t seem to have much energy to do anything, and hence no blog updates. Hopefully once I get a few good nights’ rest behind me I’ll be okay again.

So what’s been happening this week apart from sleep deprivation? Well on Monday I had a visit from a dietician by the name of Rebecca, who apart from bringing another load of high calorie drinks and dessert samples to try, discussed with me the problems I’m having with my reduced appetite and the difficulties I’m experiencing eating certain types of food. We reviewed how I was getting on with the ensure drinks and it was interesting to note that when I weighed myself at the beginning of the week I had actually put on two pounds in weight. I asked her what sort of calorific intake I would need and she tells me that based on my weight I would need to consume about 1600 calories a day. So as each ensure drink contains about 330 calories I would need to drink about five a day if I was going to live on them exclusively. Of course it’s not my intention to give up on solid food but the ensure drinks do take the stress out of trying to eat a large meal. So these days I’m trying to eat a little bit of lots of different things so that I can still enjoy different tastes and textures and not feel demotivated to eat because the diet has become so bland. We talked a little bit about fortifying food as well and already my carers have started adding double cream to things like cereals and drinks. At this rate I’ll be roly-poly man!

Had a problem halfway through the week with my care package when they wanted to send a male carer and complete stranger into my home to do the evening call. I only found out when I checked my e-mail and discovered the message. It’s funny how whenever the care agency has bad news they send it data in an e-mail and contact me by phone when it is good news. I ended up having something of an argument with the management about not sending people into my home who I have never met before when I am trapped helpless upstairs and alone. It has been an agreement all along that anybody new would be introduced properly and would first do some shadowing with one of my regulars. Also I have a strict stipulation of no male carers which the agency agreed to way back in 2008 and yet repeatedly try to put male carers into my care package. And to think the previous day I was saying how well things were going at the care package review with my social care manager. Obviously my new care package is not as robust as I would like it to be. It’s taken just one of my main carers to take a week’s holiday for things to start unravelling. Fortunately Ann, bless her, came to the rescue again and rearranged her evening so that she could do my evening meal. But I still ended up with an almost stranger for the last couple of hours.

Apart from that little bit of excitement not too much else this week. I did have a call yesterday afternoon from Heather, the District Nurse taking over from Anita. We’ve met before but I haven’t seen her for a few months so it was a case of running through everything that’s happened this year and just explaining recent difficulties with mobility, appetite and swallowing.

I must admit I’ll be glad to get this week over with. I feel so tired. I just don’t seem to have achieved much this week.


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Sunday, February 21st 2010

A consequence of reduced arm movement

My hands have started to swell up. Both the fingers and the back of the hands are starting to look puffy and bloated and I believe are contributing to my difficulty in being able to clench my fists. MND isn’t directly responsible for this but it is one of the secondary complications that can arise as mobility and upper limb movement become more and more restricted. The swelling has become steadily more apparent in the months since I’ve changed the way I interact with my computer and the environment in which I work. Up until last autumn I had my computer set up on the dining table and as this was quite spacious there was plenty of room for me to rest my left arm on the table surface whilst my right arm was supported in a modified ergo rest. So essentially both arms were laid out horizontally and would remain in this position for some hours. But after my accident last autumn two things changed which together have contributed to my current situation. The first was changing my workplace to the study upstairs where there is no room on my desk to rest my arms. The second was making the switch to speech recognition software and in so doing having little need to interact with the computer keyboard. So nowadays a lot of the time I now spend at the computer is with my hands resting in my lap whilst I dictate into the microphone. Consequently the cumulative effect of having my arms immobilised and angled downwards for months has resulted in a kind of pooling effect as the fluids in my body constrained by the laws of gravity fall downwards until they can go no further.

I contacted my physiotherapist recently on this matter, explaining what I thought was happening, and asking for advice and if there were any techniques we could incorporate into my morning ritual that would help alleviate the problem. The answer I got back basically confirmed what I had already managed to work out for myself and just suggested that I keep my arms level on the table. So over this weekend Ali and I have been experimenting with ways of propping up my arms. We tried stuffing cushions down the side of my office chair and laying out my arms on top but found that it wasn’t very comfortable or easy to keep the arms in position. Today has been a bit more successful as we’ve called into service my old modified ergo rest and mounted it on the left-hand side of my laptop so that now both hands and forearms are supported in a horizontal position (even though they’re not actually being used). I’ve been trialling it for most of the day without any discomfort so it certainly looks promising although of course it is way too early to see if it can minimise or even (fingers crossed) reverse the swelling.

So, just one example of the consequences of reduced limb movement. Not peculiar to MND of course, but it does illustrate how the body can break down and change its shape without regular movement. Just think for a moment how often in normal life we move our arms during the course of a single day. It might be to brush our teeth, wash our face, comb our hair, scratch our heads, reach into a kitchen cupboard, eat a meal, drive a car, pick something up from a supermarket shelf. The list goes on and on and of course we give little thought to it. But it doesn’t take too long for the effects of not performing these mini exercises to manifest themselves. To think this photo could be me someday if I can’t work out a way of reducing the puffiness! smile_regular

The shape of me to come? The Stay Puft Marshmallow Man! 🙂


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Friday, February 19th 2010


You know what it’s like when something pops into your head and you think ‘why on earth didn’t I think of that before?’ Well I had a moment like that recently whilst browsing through pictures on the Internet. I stumbled on the image below and I thought ‘eureka’, the answer to my mobility problems! If it’s good enough for Pixar then it’s good enough for me, and (bonus) I weigh considerably less than a house so it must be relatively easy. Why on earth put up with clumsy wheelchairs limited to smooth flat surfaces when a leather harness worn around the chest and attached to a bunch of helium balloons would be so much better. Suddenly all the advantages began to unfold in front of me: I would be able to traverse gravel footpaths, grass fields, sandy beaches, as well as snow and ice. Hell, I could even glide across a river if I wanted! And all it would need is a gentle push periodically from my carer Why hadn’t anybody thought of this before, I wondered? The more I thought about it the more I admired the simplicity of it: no heavy wheelchair to lug around, just a bunch of colourful balloons that would bring joy to anyone who saw them. Maybe I could even use the balloons for advertising (a kind of float and promote) and earn some cash at the same time!

The inspiration behind a great idea in revolutionising disabled mobility! 🙂

But how many balloons would I require, I wondered? Some quick and dirty calculations suggested it would be more than I had for my birthday last year! What I needed was somebody who was good at sums and who better than my friend Stephen up at Cambridge University. I figured that somebody who was used to calculating the origins of the universe would have no trouble working out how many balloons it would take to lift a nine stone man. But the figures the good professor has come back with just don’t make any sense to me. Between you and me I think he’s got it all mixed up: instead of working out how many balloons would be required to lift my weight into the air, I think where he’s gone wrong is in trying to calculate the mass of the Earth so that it can be detached from my feet! It’s an easy mistake to make! smile_regular

Hang on a minute, I’ve just thought of something. As appealing as all the advantages are I’ve just thought of a few disadvantages such as having to consider wind speed, direction and rain. I’m now wondering am I just swapping one set of problems for another?

As you can tell we’re entering the silly season! smile_teeth

So much has been happening lately with the disease seemingly attacking me on multiple fronts and making life challenging that I thought it was high time I injected some humour back into the blog. MND may very well take away all my physical abilities but I still, thank goodness, have my sense of humour. And long may it continue.


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2 Years of Blogging!

Celebrating two years of publishing to the web!

I’m in a bit of a celebratory mood today (Monday 15th). My blog is two years old! smile_party Wow, has it really been that long since I started writing about my experiences? I guess so judging by the volume of posts that have accumulated. Revisiting that first post again did make me chuckle a bit when I stated that it was not my intention to write in a journal-like day-by-day fashion because of course that is exactly what has happened as the blog has gradually transformed itself over the past two years. In fact thinking about it further the blog postings have increased as the disease itself has progressed, which consequently led to more to write about.

Looking back I can now see that setting up the blog was one of the best things I did. It has become a surrogate for work allowing me to keep my mind active and to give me an outlet to be creative and in control of something. Why? Because it is important to appreciate that MND affects the body and not the mind so ultimately it will only be my mind that I have left. I therefore want to make sure that this part of me continues to get used. Perish the thought that my mind would ever lay idle alongside my body!

I’ve tried to keep the blog fresh looking by continually introducing new elements and looking to see what can be improved. What started out as a text-only blog with a gallery of photos has evolved into something with a higher degree of pictorial content; some taken direct from a digital camera, whilst others have been created by myself using a variety of clipart and graphical tools. It’s these kind of things that I enjoy doing although I have to admit that in recent months they are becoming increasingly difficult to do. Adding the sidebar with links to various resources was another attempt at expanding the scope of the blog and offering further information to those interested in delving deeper.

But the biggest change to the blog took place last summer, in fact without it I could not have continued posting in its current form. But it is also the most transparent change I’ve made as you can’t actually see it directly. I am of course referring to the transition from typing to dictation using speech recognition software. I started to get really worried halfway through last year about how I was going to control my computer. My hands and arms were becoming increasingly difficult to move and as the weeks went by I was able to type less and less sentences without feeling out of breath through the sheer effort of trying to fight against paralysis. In a bizarre way it was mimicking what had been happening to my legs i.e. as the weeks went by I was able to travel a shorter distance from the house. The Dragon Naturally Speaking software supplied by AbilityNet and kindly funded by the MND Association has enabled me to continue using my computer but now for about 95% of the time using only my voice (I’ve got my fingers firmly crossed that I don’t lose my voice!).

Last November to coincide with my second anniversary since diagnosis I launched my audio blog designed to run alongside the main one. These are basically audio versions of my text postings and will serve the purpose of highlighting any deterioration in my voice over time. And purely from a vanity point of view they’ll preserve a little part of me that hasn’t so far been affected by MND.

One immediate change that you will have noticed from early in the month is the inclusion of an introductory welcome piece, something which the blog has been sadly missing. I’ve also taken the opportunity to write a short piece on what motor neurone disease actually is. Both of these new pieces will sit directly ahead of the blog and will thus introduce myself and the aims of the blog, followed by an overview of the disease.

Hindsight of course is a wonderful thing and looking back over the blog in its entirety there are a few things which I wish I had done differently, started earlier or even added which I didn’t. For instance I really wish that I could have added photos of all the people I have met along the way. But the problem was always not having anyone around to take the pictures. Even now most of my carers are not very comfortable using my camera (apart from Francesca) so I’m still limited in terms of illustrating the blog. I also regret not starting the audio blog right back at the beginning. Even though my voice as such has not changed it would have shown that I didn’t take frequent pauses for breath in mid sentence as I’m now forced to do. One thing I never got round to doing but thought about a couple of years ago was buying a video camera. I had the idea of using it to document physical changes such as difficulty eating, drinking, writing, walking etc. It’s a pity I never followed up on this one really as nothing would illustrate these difficulties better than seeing a moving image.

As for the future the blog will continue for as long as I am able to control a computer in some fashion. There are other technologies out there which I have no need of for the moment but am aware of. As the disease continues to progress I shall be looking into these as I try to stay one step ahead.

And finally, I would like to thank everyone who comes to visit the blog, especially those who have been kind enough to offer feedback, advice and compliments. It really is very much appreciated so thank you very much.


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Sunday, February 14th 2010

Looking downwards

The muscles at the back of my neck are getting very weak. I’ve been having real problems this past week bringing my head up level if it falls forward. More often than not I end up having to ask for assistance from one of my carers so that I don’t end up spending my time looking at the carpet instead of the wall opposite. The problem is most noticeable when I’m either getting washed and dressed in the morning or when I’m getting ready for bed. So for instance getting off the loo or bath seat now presents me with two problems; the first is that I need somebody to physically help haul me off the seat and into a standing position, and then to take hold of my head and bring it into an upright position. I’m even starting to notice the problem when sitting at my computer tilting my head downwards to look at the laptop screen. It’s for this reason that I have been wearing my new MND collar for most of the day now and you can see evidence of this in the photos below. It may look a bit strange but it is surprisingly effective.

Card delivery service 

One of the problems I’ve had for some time now, and even more so this year now that I am temporarily trapped upstairs, is that it is very difficult to get out and go shopping for cards and gifts whenever a birthday, anniversary, or other event crops up. Getting presents isn’t so bad provided it’s something that can be ordered off the Internet, but cards are a different matter. So it was with tremendous relief that my aunt and uncle very kindly offered to go into town and pick some out for me and then call round today and be my hands and write them out for me. And with Francesca looking after me this weekend it was an ideal opportunity for me to call on the services of my official blog photographer for a few family snaps. So thank you for all your help uncle Alan and aunt Joan, it was lovely to see you again. And thank you Francesca for the nice pictures.

With my aunt Joan

With my aunt Joan

With my uncle Alan

With Francesca

With Francesca


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Thursday, February 11th 2010

Reduced appetite and dietary supplements

Back at the start of the week in my meeting with Lara one of the things we discussed was my declining appetite and the recent early signs of problems with swallowing. I’ve been struggling to eat meals for some time now but only in the sense that I just didn’t feel hungry and not that I couldn’t actually get the food down. One of the things I’d requested of Lara was a chance to discuss the matter with a dietician. I wanted to find out what sort of calorific intake I should be aiming for now that I lead a more sedentary lifestyle because up till now I’ve essentially been trying to eat the same way I always have when I was fully mobile. But of course when you lead a normal active lifestyle you consume a lot more calories than if you were sitting down all day as I am now. And because the whole process of eating a meal is beginning to tire me out I wanted to look at eating smaller portion sizes more frequently and to top them up with some kind of supplement drink. Lara left me a leaflet on fortifying food and made arrangements for me to speak with a dietician.

On Tuesday morning I had a telephone consultation with a lady called Isabelle who told me that she would gather some information on my diet and then pass my details over to a dietician who would be contacting me at home at some point. For now though she just wanted to build a picture of what my current difficulties were so we ran through the usual sorts of questions such as how often was I eating and what were the portion sizes, what sort of food was I eating, how often did I take fluids, what was my height, and how much did I weigh? I did ask about how many calories I should be aiming for each day but she declined to answer saying that it was more important just to concentrate on eating the right kind of food than eating to a target. When we talked about how tiring I was finding it just getting through a meal the subject of high calorie drinks as a supplement came up and would I like to try them? Well I’ve heard about these Ensure drinks but most of the feedback I get is that they are not particularly nice. Nevertheless if it was a way of supplementing my reduced food intake then it was worth exploring so Isabelle liaised with my GP and arranged to have them added to my prescription. In the meantime Lara had already made arrangements for some samples to be delivered and these turned up that evening.

So for the past couple of days I’ve been wading through these samples, some of which are like a fruit juice whilst others resemble a milkshake. Yesterday mid-morning I tried a strawberry fruit juice which didn’t taste too great and smelt even worse but at least were easy enough for me to swallow. Because they are a highly concentrated drink packed with calories it is not advisable to have one closer than an hour to a meal so I thought about an hour and a half should be safe but I still felt full up when it came time to have my lunch. The same thing happened in the afternoon when I tried the strawberry milkshake version which did taste better than the fruit version although two hours after finishing it I was struggling to eat my dinner. At the moment I’m just experimenting to see which flavours I can tolerate. In the long run the idea will be to have one or two of these a day as a calorie top up. That way I can look at reducing the size of my dinners which in turn should not tire me out as much as they are at the moment. The trick will be getting the balance just right. I don’t want to give up on solid food but realistically the days of me eating large meals is probably over so for the future I expect the best strategy will be to just concentrate on eating a little of everything I like and keeping the portion sizes small.

Today a delivery van turned up with my first prescription of 40 Ensure drinks!


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Tuesday, February 9th 2010

First night!

Well I’ve survived my first night trialling the use of a conveen and despite the embarrassment of having a carer put it on I seemed to be able to tolerate it well. Mind you actually being able to ‘go’ when lying in a horizontal position is no easy thing and I did experience a degree of discomfort of wanting to go and couldn’t before things sorted themselves out. I guess it’s trying to overcome a lifetime of standing or sitting in an upright position and a natural fear perhaps that people have from childhood of not wanting to wet the bed! As for getting it off in the morning there was no way I was going to tolerate having a carer fumble around trying to remove the sheaf which is designed to stick to the skin quite firmly to prevent leakage. I found the best way to remove it ‘pain-free’ is simply to leave it on for a few minutes while soaking in a hot bath. It is then a relatively easy matter to pull off! I’ve probably give you way too much detail but hey, this is all part and parcel of what living with MND is all about and one of the roles of this blog is to raise awareness of what it is like to have MND and how you have to adapt your lifestyle.

So what did I think of it? Well once you can overcome the embarrassment and a further encroachment on your dignity it is easy to see the advantages. For starters I had a more rested night and didn’t burn up lots of energy struggling to push back/reposition the duvet cover every time I had to get out of bed. It also eliminated the fear of being trapped on the bed and needing to get up, as well as removing the risk of falling over in the middle of the night and possibly seriously hurting myself. So in summary I would say that having it has brought me some peace of mind and removed what was becoming a very traumatic time of the day.


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