The month of May – part 2

Calendar entries highlighted in yellow

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

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

Francesca and I at Black Dam

Still standing! At Black Dam

At Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

Francesca and I at Black Dam

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

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

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

11th May – A review of my care package

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

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

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

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

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

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

12th May – Measuring up!

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

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

Here’s a few scans from the brochure.

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

Page scan from the Stannah Sarum brochure

13th May – Training day / Computer woes

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

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

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

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


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One Response to The month of May – part 2

  1. jane c says:

    My goodness, Mark! Have just logged in to discover that you have been blogging prolifically this month!! Pretty amazing considering your hands and arms are obviously becoming more affected. So much of what you are experiencing now reminds me of Richard’s progress (he too had a Seiko watch that needed movement to make it work!) and the frustrations that accompany the deterioration. Long may your speech continue to be unaffected, you don’t realise how much communication is a part of what makes us a human being until you no longer have the power to talk. Hope you have had some successful investigations into hands free computing – if your speech continues to be good, you will be in a much better position than Richard was, he loved his computer but unfortunately it was one of the first casualties of this wretched disease for him. Will call back again soon.


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