Thursday, March 3rd 2011

Bits and pieces

I’m sitting here relaxing at my computer feeling very contented. I’ve just eaten a delicious toasted bacon and cheese melt sandwich that Kim had made me for my lunch. Not long before that I had been enjoying an Indian head massage courtesy of the lovely Sheila, one of the complimentary therapists at my local hospice. Now I’m just sitting back and relaxing and casting my mind back over recent events so I can get them into some kind of order in readiness for updating the blog.

We had the builders return in recent weeks to do a couple of little jobs for me. The first was to improve the performance of the shower system in the wet room. I’d not been happy with the temperature of the water since I first started using it. At best it could be described as warm even when set to maximum, but now they have tinkered with it the water runs much hotter and I can finally leave the wet room looking like a lobster if I so desire!

The second job they did for me was to fix a flat screen TV to the wall at the far end of the bed. This will make a significant difference and open up options for late evening entertainment, breakfast news or indeed allow for times when perhaps I am not well and need to stay in bed all day. And because the TV is fitted with Freeview it means that I also have access to radio stations as well. All of this is controllable via my Possum environmental control system which sits on a stand beside the bed. Finally I no longer have to try and get to sleep as soon as I am put to bed.

We seem to be suffering from a plague of ants in the new extension. We started noticing them shortly after I moved in. At first it was just the occasional one on the bedroom walls. Then we started noticing one or two in the bathroom. More recently we’ve been seeing half a dozen or more at a time crawling over the bathroom floor. Presumably they must have been disturbed during the building process but where they are getting in is anybody’s guess. We’re planning to capture one and radio tag it so I can track it on Google maps in the hope that it will lead me back to its nest! Picture the scene: a lone warrior ant returns to the nest and says “hey Queenie, look what the nice man gave me, this lovely orange stick with a sparkler attached!” And Queenie says “Why is that clock counting down?” I know, I’m bad. He he… On a more serious note a couple of days ago we had our first clue where they might be getting in and now we have coated the area with ant spray several times we’ve hardly seen any.

I’ve been suffering from some broadband woes this week. Last Sunday I lost all access to the Internet. My laptop was able to communicate with the router but the router was not able to connect to the Internet. This situation persisted for a few days whilst we tried to get BT to send out an engineer. Eventually they did and after conducting various tests concluded that it was the router at fault. Thankfully they replaced it, not only with a new one but also a new model released only last month. Within minutes everything was back up and running again so hopefully that will be the end of my troubles. But for those few days when I was cut off from the rest of the world it made me realise once again how dependent I am on technology and how we as a society have become so interwoven with the Internet. Just a few days away from it and we start to feel withdrawal symptoms. Perhaps I need to consider a contingency plan in case it should ever go down again for any length of time. Maybe it might be a good idea to look into the feasibility of investing in a mobile broadband dongle for emergencies.

And finally just before I sign off I would like to say thank you for all the lovely comments that have been left recently. I’ve really enjoyed reading them all.

Mark

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Tuesday, December 28th 2010

Normality returns

After the long drawn out run up to Christmas that seems to start before some people have even taken their summer holiday, the actual day always seems something of an anti-climax. It certainly flew by just like any other day now that care consumes such a large percentage of my waking hours. And with little of interest to punctuate it the day was soon forgotten. Christmas itself held little attraction for me this year and I am much more looking forward to being able to get out of the house on a regular basis and get much-needed fresh air. I am truly tired of living in an artificial environment. That for me will be like Christmas every day although I suppose you can only truly understand that if you were in a similar situation.

As for my furry little friend, well he did very well this year from Father Meerkat. Auntie Debbie gave him a full set of winter knitwear that she had specially made, which included a bobble hat, scarf, mittens on strings, little booties and even a tail warmer! He’s all set now for his first adventure out in the snow just as soon as we get some more! As for me, I got him a radio controlled locust! I was going to get him a clockwork beetle but I thought that he might be getting a little bit old for that kind of thing so a locust it was. You should have seen his eyes light up when he unwrapped it. For the rest of the afternoon I sat there watching him skitter around the carpet chasing it underneath the furniture. What it is to be young! And as a special treat I bought him a box of chocolate coated scorpions, yum yum!

On a more serious note I would like to thank my brother Chris for the superb top of the range hi-fi quality speakers that I can plug into my laptop. At long last I can listen to music more or less as it should be heard. Thanks also to Jason and Chery for the lovely warm looking fleece jacket that I will be able to wear when I start going out in my wheelchair during the colder months.

Before signing off I would like to say a big thank you to Suja and Debbie for providing the lion’s share of my care over the Christmas break and to Ann for helping out and cooking me a delicious Christmas meal. I really must have a word with her about portion sizes. With my pitiful appetite even I was surprised by how much I managed to eat… and that was even before I started tackling the sherry trifle!

I’ll leave you with a few pictures taken over the Christmas holiday.

With my furry little friend on Christmas day

With my little friend proudly showing off his winter collection that auntie Debbie knitted for him. Check out the tail warmer 🙂

With a very contented meerkat who has just eaten a whole box of chocolate coated scorpions 🙂

Father Meerkat has come to join the fun!

With my brother Jason and Chery on Boxing Day

With my brother Jason and Chery on Boxing Day, oh and a certain little someone!

Mark

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Merry Christmas

One of my eco-friendly limited-edition e-cards. Only virtual trees were harmed in its manufacture! 🙂

To all my family, friends, fellow PALS (people with ALS), and those kind enough to drop by, I wish you all a very merry Christmas. And if you don’t happen to celebrate Christmas then I wish you a happy holiday!

Outside my study window the colour is predominantly white. Snow carpets the ground whilst overhead looms a white featureless sky from which snow is steadily falling. It is very cold out and the roads feeding into the housing estates are slippery and treacherous. But I am far removed from the elements here in my cosy study and so have lost all touch with what it’s like having to get about out there.

I would like to say a big thank you to my aunt Joan who was kind enough this year to take up secretarial duties and sort out all my Christmas cards. So to all of you out there who have received cards from me and cannot work out the writing (on the envelope) – now you know!

I would also like to thank those of you who have sent Christmas cards this year. They are very much appreciated and it is nice to know I’ve not been forgotten even by those I have not seen for a while. Thank you all. I’ve got a nice little collection here on my desk. And apologies to anyone who I have forgotten to send a card to this year or whose address I don’t have. Sandra, if you’re reading this, I did send you a card but it has gone to your old house and I’ve just discovered you’ve moved.

And so before I sign off will you join me in a traditional Christmas song that was written by Irving Berlin Way back in 1942 and updated for the 21st century by me a couple of years ago! Okay, to the tune of White Christmas

.

I’m dreaming of some new neurones

Just like the ones I used to know

May your days be merry and bright.

And may all your neurones work right!

.

Now go and enjoy yourselves… Eat, drink and be merry. Enjoy the festive season and cherish the moment because life is precious at the best of times!

Mark

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Wednesday, October 6th 2010

One week on

Amazingly it’s been one week already since I arrived here at St Michaels Hospice. Ann and Vanessa continue to provide my morning care and feed me my midday meal. After that I’m left in the very capable (and at times extremely busy) hands of the hospice staff. The last time I was here you may remember me mentioning the enjoyment I got from the regular Jacuzzi baths I would take whenever there were sufficient staff to assist with handling me. Unfortunately as part of the modernisation programme the old Arjo bath has been ripped out and the room is currently being converted to a wet room. Sadly for me it’s not yet finished so I haven’t been able to escape from having bed baths. I was really looking forward to being submerged in water again. I miss that a lot.

The weather for the most part hasn’t been particularly pleasant since I arrived. More often than not it’s been raining to varying degrees and when it isn’t actually raining it’s been quite damp and windy. Consequently there have not been many opportunities to actually get outside. This morning was one of those rare exceptions when Ann managed to get me outside and overlooking the garden whilst we chatted over a coffee. It still wasn’t particularly warm so I ended up sitting there wrapped up in a blanket fighting off the light breeze whilst at the same time grateful for the feeble warmth from the sun.

As I sat there sipping coffee through a straw and gazing out at the gardens before me I couldn’t help but feel a sense of sadness at how their character had been completely changed. The last time I visited St Michaels I took particular joy in their small but visually interesting garden. Even before I was able to get outside I used to sit in the conservatory overlooking the gardens and just admire it and the various forms of wildlife that would visit it, marvelling at the antics of the squirrels and birds. It had a lovely closed in feel to it, like a secret garden, and the mature trees and shrubs around the boundary formed a perfect screen against the hustle and bustle of a road and general hospital just beyond its boundaries. It was like a little oasis of calm in an otherwise busy area. But now that closed in and protected feeling has gone along with one whole side of trees and shrubs, leaving in its place a wide open area with views of the car park. The reason it’s been done is because the Hospice wants to build a labyrinth and the area between the car park and the garden is the only area available. I believe the intention is to put up a fence and replant with a hedgerow to maintain the seclusion of the garden so perhaps it will look a lot better when completed. It’s certainly been something of a controversial decision and I can’t help but feel that they’ve traded something mature and natural for something that is artificial. But that’s just my own opinion.

So apart from today’s little excursion outside it’s been relatively quiet and I’ve been left to my own devices free to catch up on some reading, writing and watching a few documentaries.

As for my meerkat friend, well he’s just settling in fine. Why only the other day I caught him saying to one of the nurses, with a wicked glint in his eye ‘come back to my burrow and I’ll show you my dried scorpion collection’ smile_regular. Honestly you can’t take him anywhere!

Mark

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Construction Tail

Are you all sitting comfortably? Good, then I shall begin. I have a tale to tell…

All was quiet in the guard room... "Hey Mr sleepyhead, it's time to get up. Come on, wakey-wakey rise and shine. You've a big day ahead... and a very important visitor!"

Oh no, it's the camp Kommandant who's turned up unannounced to make a surprise inspection of the new high security wing. He’s far from happy to find one of his guards sunbathing instead of patrolling the perimeter. This is one guy you definitely don't want to mess with! I wouldn't want to be in your paw-shoes Mr guard!

The guard, with paws trembling, stands briskly to attention fearful of the punishment the camp Kommandant is sure to dish out. "You only have yourself to blame Mr guard. I did try to warn you that you had a special visitor arriving. Let's just hope he doesn't find out that it was YOU that was responsible for the last three jailbreaks!"

You've got one chance, and one chance only to impress me today, says the camp Kommandant with an expressionless face. "All I can say is you had better not mess this one up Mr guard. You know what he's like when he gets really angry. We never did find that brother of yours..."

With assistance from the guard the camp Kommandant slowly descends into the new high security wing. Let's just hope he doesn't find the secret tunnel my carers have been busy working on!

Oh no, they've found the exit to our escape tunnel. All that digging with teaspoons for nothing! He's only been here five minutes and already he's thwarted my plans. This Kommandant guy sure makes my regular guards look like a bunch of amateurs. I hope he doesn't have any relatives!

Eager to impress, the guard shows the camp Kommandant the new patent pending 'anti-jailbreak' electric sponge fitted between the walls. "I'd be careful where you place your foot, Mr guard. I do believe the Kommandant is holding the switch!"

They're up to something. The Kommandant wants some alterations made to the flooring. Couldn't quite hear what he was whispering but did catch the word 'mines' mentioned. Gulp!

The guard, keen to show initiative (and recover some brownie points) points out a suitable location for the watchtower. Oh no, the Kommandant has spotted us! Quick, run for it.

I'm not really sure what they're up to here. We did try asking but they just giggled and ran away!

Written, directed and edited by Mark

Shot on location (and so was the director)

No meerkats were harmed during the making of this photo story

 

This photo story has received a certificate rating of U

(universal, suitable for all)

May contain scenes of gross cuteness

*

A special thank you goes to Debbie who took the photos and has proved once and for all that she is as barmy as I am smile_regular.

Mark

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Saturday, September 4th 2010

All in a day’s work!

As you can see from the photos below there has been quite a dramatic change since yesterday! A team of half a dozen bricklayers turned up this morning and together they soon made light work of erecting the basic shell up to roofline height. It’ll be quiet now for the next few days as they need to let everything set.

A big thank you this time goes to Debbie, who in between making coffees for the bricklayers, was kind enough to pop outside occasionally to take a few pictures on her camera. In this fashion I was able to keep an eye on the progress even though I couldn’t be there in person. Unfortunately it turned out that those particular pictures were not up to the usual technical standard that I post, so after the builders had left I asked Debbie to take a whole new sequence of pictures (on my camera this time) and it is these that you can see below. I wish I had done this to start with so you could see how quickly it was taking shape. Oh well, at least we got some good pictures in the end.

Front/side view showing window into bedroom. 4th September 2010

Rear/side view showing bathroom window. 4th September 2010

A full on side view showing the entire length of the extension up to the roof line. 4th September 2010

Close-up of the bedroom window and interior. 4th September 2010

Interior view of the extension from the bedroom window. 4th September 2010

And finally…

It looks like those guards of mine have got wind of the building work going on (I knew we couldn’t keep it quiet for very long) and have their own ideas on how it will be used!

One of the guards inspecting construction work on the new high security wing. There’ll be no escape this time! 4th September 2010

Mark

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Tuesday, August 24th 2010

50!

Today I celebrate having completed 50 orbits of the sun! smile_party

According to a NASA website the Earth travels about 940 million kilometres a year as it orbits around its parent star. That’s about 584 million miles a year. So in my lifetime I have travelled 47 billion kilometres or 29.2 billion miles. And that doesn’t even include the distance travelled as our solar system moves through the Milky Way Galaxy, or as our galaxy moves through the Universe. Phew! No wonder I feel tired. And yet despite all that travelling I haven’t actually worn out that many pairs of shoes smile_regular.

It’s quite a sobering thought to think that I have now lived for half a century! But the thing is I don’t actually feel anywhere near fifty and yet here I am, a fully paid-up member of the ‘village elder’ club smile_regular! To think, people will now come travelling from far and wide to hear me dish out little nuggets of wisdom like ‘don’t do it’, ‘I wouldn’t if I were you’, ‘it’s not worth it’, ‘think of the consequences’. Or maybe not!

The fact that I was 50 today was kind of hard to ignore as I was wheeled out of my bedroom this morning and along the landing into my study. The route was emblazoned with banners, strings of multicoloured ’50’ numerals and brightly coloured helium balloons! Debbie had been busy last night after I went to bed! I didn’t have the heart to tell them that I was actually 40! Well, 50 is the new 40 as far as I am concerned, he he.

The celebrations kicked off around 11 AM with a surprise visit from Poppy, Ann’s delightful little granddaughter, who came bearing gifts: a very large helium balloon and a delicious looking birthday cake (and I can vouch for the fact that it was delicious because I had several pieces today)! Shortly afterwards we were joined by my aunt and uncle, who I spent an enjoyable morning with opening cards and eating birthday cake. And that is how the day went really with people dropping in during the afternoon and evening with cards and presents… and more balloons. To be honest it was the opportunity to chat and socialise and have company that I enjoyed the most. So thank you to Jim and Val, my friends from Basingstoke NeighbourCare, to my brother Jason and his wife Chery, and to my friendly next door neighbour and his family, all of whom I spent some time with today. And thank you Chris, for the phone call from Scotland! Wish you could have been here today to share it with me.

With Poppy and Ann

With my uncle Alan and aunt Joan

Balloons for sale! Step right up... Anyone you want! 🙂 Anyone would think I've turned 50!

Just a man and his meerkat. One of the presents I received.

With my brother Jason and his wife Chery

With Alli

Because of my love of wildlife, Meerkats being a particular favourite (long before a certain comparison website’s TV adverts), there appeared to be a definite theme running through my presents this year with a Meerkat drinking mug, coasters, and a beautiful photograph printed on fabric that will take pride of place on one of the walls in my extension soon. So thank you to everyone that has been a part of today. It was all very much appreciated.

And finally… one of the more interesting things I received for my birthday was a high-powered microscope smile_wink! At last I would be to keep an eye on those little rascals that are causing me so many problems lately. It even has a built in picture taking mode so I’ve been able to take a few snaps already to see what they’ve been up to. Take a look yourself…

Captured on film and magnified an incredible x20,000. This sub-microscopic shot shows a rare glimpse of Mr Neurone and his fellow neuronettes celebrating my 50th the only way they know how! 🙂

This one amazed even me and I still haven't yet worked out how they managed to achieve it! In a tip of the hat and gaining inspiration from air forces the world over, my naughty little neuronettes have arranged themselves in 'missing muscle formation'. I had to use cutting edge special lighting techniques (i.e. a blue Quality Street wrapper pulled tight across a penlight torch) on my ultra expensive state-of-the-art Fisher-Price microscope to show up this delicate arrangement! 🙂

Mark

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Sunday, August 22nd 2010

End of the week catch up

Okay, it’s time for a bit of a catch up on the day-to-day stuff which has been rather neglected of late as I poured all my energy since leaving the hospice into migrating the blog to its new home. That project is almost complete now and the next step will be to raise the profile of the blog so that it shows up in search engines. My old blog site did very well in Google search and I’m hoping that the new one will fair just as well now that I have registered it. In the meantime it has been encouraging to see that traffic during the first full week has been quite good. It’s certainly nice to see familiar names find their way to the new site! And thank you for all the lovely comments I’ve received lately. They are always very much appreciated.

Aches and pains

I’m starting to get a lot more pain in my arms and shoulders now. In fact it’s even starting to become a problem in my legs and neck. I suspect it’s a combination of disease progression, i.e. muscle wastage, and lack of mobility. After lying in one position all night my muscles simply stiffen up to the point where it is quite painful to be handled. I get the same problem now sitting in a wheelchair all day. In fact when I think of it there is a clean split straight down the middle regarding how I spend my time i.e. 12 hours in bed (not all asleep) and 12 hours in the wheelchair. Perhaps it’s small wonder then that I’m getting so many muscular problems now. I do of course still have some passive physiotherapy exercises performed on me each day but at times it does feel like we’re fighting a losing battle. In fact because my arms have become so immobile now we are repositioning and giving them gentle exercises every couple of hours. It’s a case of three wiggles, two waggles and no woggles! In fact one of the first things you learn in physiotherapy school is to never woggle a client. Can you imagine the headlines if it ever got out: ‘Man found woggled’! smile_regular

A consequence of sitting in a forward facing wheelchair all day is that you tend to look straight ahead for long periods of time. This has the effect of 1) only seeing people as they appear in your field of view, and 2) getting a stiff neck. I’ve started noticing lately that it is becoming a bit painful at times to turn my head through 90° in either direction. Now I have to try and remember to make a concerted effort to move my head from side to side at frequent intervals to alleviate the problem.

The above problems once again show how a lack of regular movement in any particular muscle group soon leads to problems. Just think for a moment how much an able-bodied person will consciously and subconsciously move the various parts of their body during the course of a day. When I think back to all the cycling and walking, the gardening, the DIY and other physical exercises I used to do. Sigh…

One thing I have started to do recently when I’m hoisted up from the bed each morning is to use my legs to swing backwards and forwards as I push against the mattress. My carers thought I was doing it for the fun of it but I’m actually doing it for the exercise and as a last defiant gesture against an unrelenting disease. So for a few minutes each morning I can create this illusion of moving myself as I sway backwards and forwards. And yes it’s fun too! smile_regular

Care package

We’re in high summer and as usual for this time of year my care package is creaking and groaning a bit as various people in the team take their annual holidays. This time round I have the added problem of requiring double ups several times a day and this places a further burden on the care agency to allocate staff. The one person they did allocate to be a regular helper on the double ups has been off more than on lately and at the moment I seem to have an endless stream of strangers coming through the door every couple of evenings. This is far from ideal particularly as it is always at the times when my care is most personal. And to be honest I’m getting really tired of lying half naked and paralysed on my bed whilst yet another perfect stranger stares down at me!

On a far more positive note it was only through this constant stream of new faces was I introduced to a very charming young Nepalese woman who created a big impact with me from the word go with her quick learning, proactive approach to work. Here was someone who was using her initiative rather than standing around waiting to be told every little thing. In many ways she reminded me of the way Francesca used to work, particularly as both of them came to me with very little experience of working in the care industry. I guess with some people it just comes naturally. And like Francesca she has a very friendly and likeable personality that I found myself instantly warming to. As the marketing folks would like to say, she ticks all the right boxes! I’m now keeping my fingers crossed that she can join my care team on a regular basis fingerscrossed.

And lastly, at least on the subject of care, I would like to say a really big thank you to Debbie who has done so much to keep the care package running as smoothly as possible these past couple of weeks. She has amazingly worked 11 consecutive nights, in addition to all the weekday and weekend hours she has done for me, whilst covering for other staff who are on holiday. What a trooper!

A bit of an emergency!

I had a real fright last Friday morning when Ann greeted me by telling me that water was dripping through the kitchen ceiling adjacent to the strip light and pooling on the floor! I’m normally fairly sleepy first thing in the morning but with news like this I immediately pricked up my ears as the one real fear I have is being trapped and paralysed in a burning building. And as we all know water and electricity do not mix!

A quick peek in the airing cupboard directly above the kitchen revealed a wet carpet. This was traced back to a weeping valve controlled by one of the electric zone actuators. Whatever happened must have occurred during the night whilst I was sleeping. I shudder to think what could have happened if the water had found its way into the zone actuator or the strip light.

We tried contacting my local plumber but couldn’t get a response. In the end the solution was much closer to hand. The builders working just outside in the garden were able to contact a plumber they use and who subsequently turned up at the door within the hour, identified what needed to be done, went away to get some parts, drained the system down, replaced the parts, refilled the system and had everything working again by lunchtime. Although it was only one of the valves which had failed I decided to have them both replaced as they were both the same age. I figured it was only a matter of time before the other one went anyway.

* * *

And finally just before I sign off I would like to say thank you to my friends Bill and Kim from Eli Lilly who have both sent me some very nice e-mail letters lately. They were very much appreciated.

Mark

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Monday, August 9th 2010

Settling back in

It’s been a week already since I left St Michael’s Hospice and returned home. On my last day there I was rather apprehensive about returning home as the situation I would find myself in was not that far from the one I had left, only more so. I would still be trapped upstairs for the foreseeable future, and because of my lack of mobility would now find life even more difficult as certain bodily needs could only be fulfilled when there were sufficient carers to hand. Also I would need to get used to having carers work in teams of two at certain times of the day – a further sign of care, despite being absolutely necessary, is steadily becoming ever more pervasive and time-consuming. I sometimes wonder how I ever manage to achieve anything these days as the amount of ‘me’ time decreases each time the care package increases. It is a constant frustration that I face: my mind is the same as it always was and just wants to get on and make the most of each day. Unfortunately, my body, much like an old machine needs a lot of maintenance these days. Time for a new one, I think. I wonder if The Body Shop would do a brain swap out? smile_regular

So how has it been this past week? To be honest a lot better than I imagined. Considering they’ve only had a week of handling me so far my carers have done rather well, and together we have already managed to identify and iron out a lot of the problems we first faced regarding hoisting and manual handling. Although they will already have had experience in these things, every client will have different physical needs and will thus need to be treated and handled differently. In my case the difficulty is in handling my upper body because of all the wasting that has occurred over the past 3 1/2 years. This means that extra special care is needed when rolling my body from one side to the other on the bed as I am dressed. For instance carers need to keep a constant lookout for what my arms, fingers and neck are doing so that they don’t become trapped or bent too far in one direction. We’ve managed to minimise the discomfort as much as possible but it can still be a painful experience. And despite the fact that I am merely lying there whilst others do all the work I still feel exhausted by the time it is all over.

I’m missing my baths already. Being submerged in hot soapy water was a lovely way to start the day and very soothing on my aching muscles. Having a bed bath just doesn’t compare although it does of course keep me clean. Having a hair wash now is an interesting experience as this too needs to be performed whilst I am in bed. Basically we’ve been given what looks like a scaled down inflatable children’s paddling pool with a drainage tube. Actually having my hair washed is now a two-person job and between them they need to support my head and neck, pour water from a jug over my hair, apply the shampoo, and keep an eye on the level of water in the drainage bucket by the side of the bed. Nevertheless despite all this palaver Alli and Debbie (who were the first to try out my mini paddling pool) managed the whole operation without a problem.

Inevitably as my care needs have escalated so too has the need for more people in the team. To be honest this is nothing new and I’ve been saying for months now that we need another carer who is flexible enough to fill in a few problematical areas we have so as to lighten the load on everyone else. We also need someone who can fill in when anyone else in the team is off for whatever reason. So since coming home we’ve added two new people: Linda, who will be assisting with many of the double ups, and Emma, the youngest person in my care team, who spent this evening shadowing Alli.

Because of the complexity of my care package now Debbie and I have been spending some time over the past weekend rewriting the care plan. It’s only when you write it all down and look at how many pages it takes up do you realise how involved it has become. But perhaps not everybody writes them to the level of detail that we have but I feel that it’s important to be very precise in how I wish to be cared for. Also I then don’t have to rely on my own memory to instruct new people. It must seem rather daunting to new people though.

Before I sign off today I would like to express my sincere gratitude to Richard, my very friendly contact with the Remap charity, who has once again saved the day for me (twice) this week. On my first full day back at home he turned up in the morning with a drink holder that he had fabricated and which could be attached to my wheelchair. This marvellous little device holds a standard sports bottle and the screw on top has been opened up to allow for a straw to be fitted. Now I am able to drink unassisted at any time of the day. The second thing that Richard has done for me this week is to produce a set of nicely shaped wooden extension blocks that have raised my desk off the ground by about 3 inches (7.5 cm). So now I can get my legs underneath the desk again which means I can get closer to the screen and actually see what I’m typing! Well done Richard, two small enhancements that have had a big impact!

Mark

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D+1000

Who’s the daddy now, Mr Neurone? smile_regular

And Mr Neurone replies “you can be as cocky as you like because I’m still going to get you in the end” smile_devil

Oh smile_sad

Today (3rd August) marks the 1000th day since I was diagnosed with Motor Neurone Disease smile_party. It is indeed cause for celebration because back when I was first diagnosed I was none too sure whether I would still be around even a year later as I knew so very little about the disease and nobody could give me a clear answer. But here I am still rolling along and singing a song (of sorts), a bit worse for wear these days, but generally happy to be alive and trying to make the best of an ever worsening situation.

But oh my, how my life has changed in those 1000 days. This awful disease has turned my world upside down and forced me to go from a life of independence to one of complete dependence. It’s been a hell of a ride so far and at times I struggle to keep up, let alone stay one step ahead. And on the few occasions when I have dwelt on what has happened to me I feel an overwhelming sense of sadness and heartbreak at all the physical skills that I have lost and what they enabled me to do. The human body is a remarkable product of evolution when it is working properly – if only it would stay that way. But now after 1000 days of muscle weakening, wasting and paralysis I have become disengaged from the material world around me. I don’t touch anything anymore. I have become a passive observer: I talk to my computer, I watch my TV, I listen to music, I read off a screen. One thing’s for sure, I wish I’d backed myself up a few years ago before all this started. I could have done a full restore back to my normal self, ha ha.

In the time I’ve had this disease I’ve had to say goodbye to so many of the things that gave my life meaning and enjoyment and now they are nothing more than a distant memory. But hey ho, life goes on, just in a different form. And it is this ‘different form’ that I am now trying to adapt to. In a sense my world has now contracted down to a chair that I cannot even control myself so I now have to wait until people appear in my field of view rather than turn to greet them. At times it is incredibly frustrating, and although people can sympathise, I don’t think they can truly understand, any more than I could, unless faced with a similar situation. The trouble is my mind is still working flat out at 100% even though my body (at the muscular and motor control level) has just about given up the ghost, and the technology I use simply cannot keep up with me, hence the frustration.

I think that to coexist with something as devastating as MND you have to constantly reinvent yourself to suit the changing situation. I also believe that it is imperative to keep the mind fully occupied, and for me this has become a sort of defence mechanism shielding me from dwelling too much on what has happened to me. I’m also extremely grateful that it has so far not affected my voice (except in volume), although I’m sure there are some people who might wish it had whenever I’ve had to battle my case to get things done. But although it might not have made me popular at times I’ve had to do it or risk having to accept what I’m given or how I’m treated which isn’t always what I want. Had I not intervened in the ways that I have done since being diagnosed then I’m certain that things would have been very different… and far worse.

By far more than anything else it has been my legs and their gradually weakening ability to support my weight that has dominated these past few months. During the weeks leading up to my hospital admission I was getting very stressed at the mere thought of trying to stand up and walk the short distance between bathroom, bedroom and study. Every time I attempted it I could feel my legs complaining at the stress I was putting them under and it would often feel like they were about to collapse from underneath me at any moment. In a sense it was a relief to finally move out of that dangerous intermediate phase in which I was neither fully mobile or fully disabled. At least now I am removed from the fear of taking a nasty fall and suffering a terrible head injury.

My recent five-week stay at St Michael’s Hospice has perhaps given me a taste of things to come and if I was under any apprehension about visiting a hospice before then those fears have now been dispersed. It has been quite an experience for me (in a very positive way).

The other thing that has caused me no end of stress these past few months has been the continuing saga of trying to get an extension built and what it has cost me in terms of restricted movement whilst I wait. I think if I could do anything different at all, or at least pass on some advice to those newly diagnosed, it would be to start planning for severe disability straightaway. Don’t wait until the legs start showing signs of weakening because it can take an incredible amount of time to go through all the grant approval, planning and construction stages. I started flagging my concerns regarding mobility early last year and here we are in high summer the following year and I still have yet to get a single brick laid. Of course on the flip side of this I’m not sure how easy it would have been to get the Disabled Facilities Grant a year earlier when my legs seemed perfectly normal and I was able to walk quite a few miles each day.

Moving on from where I am now though and I am under no illusions that it is going to be easy. MND is a very complex disease that places severe demands on all those who are and will be caring for me in one capacity or another. My respiratory system is already weak and a year ago I was told that it was on the bottom end of okay. My breathing definitely feels weaker than it did a year ago but thankfully I can still breathe unassisted although at times it does feel like somebody is tightening a belt around my chest one notch at a time with each passing month. And as time goes by I’m going to be more and more at risk of chest infections and this can be potentially fatal so I will need to be very careful, particularly with the people I come into contact with.

This D+1000 post is the last of the D+ series. I feel that they have now achieved their aim which was to document all the changes, from the very early stages of the disease when I still had all my abilities, to a time when I would be fully dependent on others. As I am now at that stage I feel that there would be little point in continuing as that part of my story has now been told and what comes next is really more a case of learning to live with severe disability on a day by day basis. I feel that my regular calendar entries can serve me better in that respect. However, if I should be so fortunate to live another 1000 days then I daresay that I might be tempted to write a D+2000 post! In the meantime I will still continue with the yearly anniversary posts.

I made it ! Me, today! (Thanks Alli for taking the photo)

Mark

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