The month of May – part 5

Calendar entries highlighted in yellow

23rd May – Return to Black Dam!

Woke up to a gorgeous clear blue sky – not a single cloud in sight! With my personal care and breakfast out of the way, Francesca and I headed off to Black Dam once again. Although it’s the third time this month I’ve yet to grow tired of this tranquil little part of town that I’ve overlooked for so long. This time I got my trainee staff blog photographer to bring along my sturdy tripod and infra-red remote trigger in the hope that it might make it a bit easier to get some pictures of us together. As it turned out the remote trigger proved to be rather temperamental but we persevered and got there in the end. Technology! 🙄

There were lots of ducks and geese around this week and even Mr & Mrs Swan put in an appearance. I walked along the water’s edge under the shade of the weeping willows watching Francesca trying to entice the birds out of the water with pieces of bread. At one point we saw a whole brace of ducks swimming towards us, each one leaving a V shaped wake behind it. The pattern would have made a good picture. Anyway, here’s a few shots of Francesca and I just goofing around and having fun with the camera. Nothing too serious today, just enjoying the moment.

Lean on me! Francesca and I at Black Dam

Big smiles. Francesca and I at Black Dam

Happy! Francesca and I at Black Dam

Sneaky! Francesca and I at Black Dam

Is it on? Francesca and I at Black Dam

Where did those antlers come from? Francesca and I at Black Dam

Laughs. Francesca and I at Black Dam

Oh, and before I forget, thank you Francesca for writing out my nephew’s birthday card. I couldn’t have done it without you – literally. It’s so frustrating now not being able to write out family greetings cards for that personal touch.

25th May – More fun with the stairs

I’m not having a good time with the stairs lately. After last week’s fall I’ve had a hard time rebuilding my confidence and using the stairs has become very stressful. Yesterday when looking around my niece & nephew’s new home I was almost paralysed with fear coming down the straight, steep & narrow staircase. I was okay going up (albeit slowly) but as soon as I tried making my way down my balance seemed to alter, my legs felt weaker and my confidence left me. I ended up coming down the stairs sandwiched between my brother and sister-in-law with my hands resting on the banister.

Today when I woke up it took multiple attempts before I found the confidence to step off the landing and walk downstairs. Later in the day I got trapped upstairs again as my legs just felt too unreliable to attempt the descent and my arms are completely useless and cannot be relied on should I start to fall. Eventually I decided to try something different by sitting on my bottom and coming down the stairs one step at a time. So I held onto the banister rail that overhangs the stairwell and with my back against the wall gingerly slid down so that I was on the floor. No sooner had I done this when I realised that if this failed I would be trapped on the floor until my carer arrived. I have very little upper body strength now so it took a lot of wriggling along the carpet, whilst trying to ensure that my arms didn’t get trapped, before I was positioned face down with my legs pointing down the stairs. I then had to spin myself round and slowly descend on my bottom one step at a time in a completely undignified way until I was about three steps from the floor. At this height I was able to raise myself up albeit with trembling legs. Phew, what a nightmare! I think the staircase is an accident waiting to happen. I really wish I had the stairlift in place already but I’m still waiting for one more quote later this week. The other thing I wish I had was a downstairs toilet. That would make life so much easier for me as I would only need to use the stairs at the beginning and end of the day. I think every 2-story house should have one.

I tried to get on and edit some more digital photos from my recent excursions, but trying to simultaneously use the keyboard and mouse (required for certain editing tools) is proving frustratingly difficult. For all the time I spent on it this afternoon I still only managed to complete five photos.

Half way through the evening, shortly before I planned to sit down and watch some TV, I got stuck upstairs again on a visit to the bathroom. After the climb up my legs felt very weak and as soon as I attempted to descend my balance became unpredictable. I ended up having a very early night!

26th May – Taking it easy

Thanks to being stranded upstairs last night I ended up spending twelve hours in bed, haha. Amazingly I was able to sleep through most of it, although I did get confused at one point when I heard car doors slamming – I thought someone was off to work but it was someone arriving home at midnight! I’d only been asleep three hours! When morning finally arrived I didn’t attempt going down stairs until Ann arrived by which time my legs felt a bit more reliable. But I’m so wary of my legs now that I found myself trying to arrange my trips to the bathroom around the times when one of my carers was around. For the rest of the day I was sitting in one chair or another as I’ve noticed recently that my upper leg muscles are starting to hurt a little when I get up. It’s actually quite frightening the speed at which my legs are weakening now and I’m starting to grow concerned about the time I’m here at home on my own. Having carers around at least gives me some peace of mind.

Looking out the patio windows as I type away on my laptop and seeing the sun shining down from a clear blue sky brings a certain frustration and sadness. Not so many weeks ago I was at least able to go for short walks along the field behind the house but now I daren’t even attempt that. And I would give so much to be able to get on my bike and go cycling along the country lanes again. This is a very cruel disease.

28th May – More measuring up / An afternoon with Alison

‘Gavin the Gardener’ spent most of the morning tidying up my back garden and it really is starting to look a lot better. I’m glad I’ve been able to find such a hard working and reliable gardener. At least that’s one thing I don’t have to worry about anymore.

I had Paul from Bentley Mobility call at lunchtime to measure up and quote for a stairlift. This is the third and final quotation. Because of the way my legs are going lately I’m really keen to get things moving now. Delivery times with this company seem very good – if true. I’m being told that Stannah are currently able to offer an express service on curved track stairlifts and can deliver in 2 weeks. Add another week for the photographic survey and drawings and where still only looking at 3 weeks. Fingers crossed I’m hoping to be in a position next week to place an order.

Here’s a few scans from the brochure.

Page scan from the Stannah Sofia brochure

Page scan from the Stannah Sofia brochure

Page scan from the Stannah Sofia brochure

I had a pleasant afternoon with Alison using up some of this week’s social hours. She’d brought along a super-lightweight wheelchair that had been loaned by a friend just in case the walking proved too much. Although I had a little sit in it to see how it felt I was determined to get through the remainder of this month under my own steam. I had only been walking around the town centre for about ten or so minutes before I began to question the wisdom of my actions. My legs soon started to feel weak under the strain of supporting me and before heading back to the car I took a few minutes out to rest on a bench in the shopping mall. Clearly the days of me hoping on a bus and wandering around town by myself are over and in future I’ll just have to swallow my pride and accept being pushed around. The rest of the afternoon was less stressful and far more enjoyable as all I had to do was sit in Alison’s car whilst we took a pleasant drive down to Winchester. It was so nice just to sit there with the windows open and being buffeted by the warm air. Thank you, Alison, for everything this afternoon.

29th May – Spoilt by my carers – yet again!

Want another example of how much my carers spoil me? I have three flower tubs at the front of the house that through neglect had become infested with weeds. Ann had been to a garden centre yesterday and bought me a whole range of bedding plants so after she’d finished my care she got stuck into a spot of container gardening. By the time she had finished I had three tubs full of colourful plants that make the front of the house look so much nicer. How kind is that? I really am lucky to have such wonderful people looking after me.

Tried to go for a short walk with Francesca at lunchtime but didn’t get far before my legs started to tire and I felt it prudent to turn back and head for the safety of home. I never thought I’d ever hear myself say this but ‘roll on when I get my own wheelchair’! Well, it’s either that or spend my remaining days housebound and that is simply not an option. I want to continue going out, getting fresh air and having a change of scenery. To think, this time last year I was able to walk anywhere I wanted, and the year before I was cycling all over north Hampshire. What a horrible disease this is turning into as yet another of the things that made life enjoyable for me sails into the history book.

30th May – Weekly treat time again!

 

Sun is shinin’ in the sky,

There ain’t a cloud in sight

It’s stopped rainin’

Everybody’s in a play

And don’t you know

It’s a beautiful new day.

 

Runnin’ down the avenue,(Pant, Pant, Pant)

See how the sun shines brightly

In the city on the streets

Where once was pity,

Mr. Blue Sky is living here today.

 

(Chorus:)

Mr. Blue Sky, please tell us why,

You had to hide away

For so long where did we go wrong.

 

Hey there Mr. Blue

We’re so pleased to be with you

Look around see what you do,

Everybody smiles at you.

 

Mr Blue Sky, Electric Light Orchestra (Jeff Lynne), 1978

 

It’s Saturday, the sun is shining, there’s a clear blue sky, I’ve got the camera loaded, Francesca has the car parked on the driveway, and where headed off to Black Dam once again to supplement the birds weekly food intake. At this rate there are going to be some very obese birds waddling around soon. Don’t blame me guys n gals if you can’t take off!

I’ve been lucky with the Saturdays this month and have been able to get out for most of them. Because of time constraints we are a bit limited how far we can travel so we’re lucky this is so close. Didn’t take too many photos this time but still enjoyed watching the birds antics and being able to relax in the lovely warm weather. My legs were not too bad this morning and I was able to walk around without too much bother although it was reassuring to have benches scattered about. Thank you, Francesca, I really enjoyed this morning.

At Black Dam

At Black Dam

Francesca and I at Black Dam

Alison very kindly dropped by half way through the afternoon to make sure I had plenty of cold drinks on hand as it’s getting more difficult to even get a drink of water from the tap by myself, and on a hot day like today I drink a lot more. This act of kindness is yet another example of how thoughtful and generous with their time my carers are. It’s not even Alison’s turn to provide care for me and yet she still goes out of her way to do so. That’s dedication. Thank you so much, Alison.

From a lovely morning to a frustrating afternoon stuck in the house. I know I should be grateful that I at least managed to get out for an hour this morning (and I am of course), but looking out the patio windows at that beautiful weather and I would have given anything to be able to jump on my bike and go cycling down the country lanes, or simply go walking over to Manydown Farm. Instead I sat in my glide about chair near the patio window and soaked up the heat of the sun like a lizard basking on a rock. We all take our mobility for granted until it starts to fail us. I was just the same and it is so heartbreaking seeing it wither away.

Mark

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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.

Mark

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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.

Mark

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