The month of May – part 1

Calendar entries highlighted in yellow

1st May – Time rushing by

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

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

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

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

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

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

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

Me and Mr Swan at Black Dam

At Black Dam by the water's edge

At Black Dam

At Black Dam

All smiles! With Francesca 🙂 at Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

What? You wanna piece of me? 🙂

4th May – Frustrating day

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

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

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

5th May – Afternoon with my MNDA visitor

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

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

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

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

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

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

6th May – I need a secretary!

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

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

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

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

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

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


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