D+500

It’s now 500 days after diagnosis! 😀 Phew, made it. I’m half way to the big one-thousand! Will I still be around then? You betcha! (he says with fingers and everything else crossed). Actually day 500 was last Saturday but I’ve deliberately held back publication of this blog entry so that I could include updates on my latest hospital visits. But as is usual I’ll start with a recap of events occurring over the past 100 days.

I am pleased to say that my homecare package continues to run smoothly. Back at the beginning of February, Alison & Francesca were joined by a third main carer, a lady by the name of Ann, who (like Alison) brings with her experience of caring for people with MND. Ann is my senior (in years) carer and I jokingly tell them that I now have three generations of carers; the grandmother, the mother & the daughter :-). Ann is a very friendly and sociable person and was a good ‘fit’ for my personality from the word go. She’s also a good worker too. So now I have a core team of three main carers and no longer do I have all my eggs in one basket which means I also have a degree of cover between them should any of them be unavailable for one reason or another. An example of that was during the recent snowfall when it became impossible for one of my carers to get out to me. Disease of course does not discriminate between good and bad weather but it’s reassuring to know that my care package was robust enough to ensure continuity of service. And since my team of three has been in place there has been no need to introduce further new faces. I’m very lucky that I have such a nice team of people looking after me. I am particularly indebted to Alison & Francesca who have done so much to lift my spirits and keep me happy. They’ve brought me gifts, taken me shopping, accompanied me to the cinema and been out for walks with me. Nothing seems to be too much trouble for them and they do so much running about for me which often means giving up their own time, so girls if you’re reading this thank you so much for everything. It really is appreciated.

I’ve already written at length in the previous blog entry of all the work that Marion, my Adult Services Occupational Therapist has been organising on my behalf. But Chris, my Primary Care NHS OT has also been busy looking after me. Back in January she made arrangements with the Hampshire Fire Brigade to have them pay me a safety visit on the grounds that I was an ‘at risk’ case because of my progressive disability and the fact that I was here alone. Not long afterwards three burly young firemen pulled up outside the house in their fire truck one evening. Two of the guys walked around the house assessing each room for fire risks whilst the guy in charge gave me a chat about fire risks in the home. By the time they left I had three new smoke detectors fitted and a pile of leaflets to read. I had also made them aware of the nature of my disease so they could keep a note of it on their database in case of emergencies.

Something else that Chris has arranged for me to try out is a reading table. With a surface about 24” x 18” it is large enough to accommodate most coffee table size books even when they are spread open wide. The table surface can be inclined at an angle to aid reading but I found it hard to handle the books in this position so keep it flat. Because it’s quite low down (and really designed to enable people to read in bed) the only place to rest my arms is on my legs so to turn a page requires me to support my right arm with my left, hold onto the page and pivot. Recently I’ve been trying to plough my way through a large format book of landscape photography that I received as a Christmas present. I must say that separating and turning pages is now an incredibly slow and tiring task. I manage about 50 pages (25 page turns) before I’ve grown too exhausted. It’s easier to read magazines with their lightweight paper because I can then use a dimpled rubber thimble which gives sufficient traction to flip the page. All of this however is only ever going to be a short term solution before I need to come up with something else. It’s a real pity that eBook technology isn’t further ahead. What would make life so much easier would be to have an A4 or larger eBook reader with a high resolution colour screen. That way I could view all my coffee table books on a lightweight device without straining my arms.

More successful has been the adaptation I’ve had to one of the Ergo Rests I use to enable me to type on my computer. I have Richard from an organisation called REMAP to thank for this. Basically the adaptation involved removing the old arm support and replacing it with a much longer purpose built one which is now capable of supporting my whole forearm. This has the effect of raising up my right shoulder and is far more comfortable over prolonged periods. With the old one the support was only large enough to support my hand which meant my arm dropped down at the wrist bringing my shoulder with it. By the end of the day my shoulder was killing me and it was starting to look like my right shoulder was developing a permanent droop. Of course the Ergo Rest is actually designed to support the forearm but I have to use it as a combined hand/arm support as my wrists are so weak that without support my hands would just drag across the keyboard.

It’s hard to believe but it’s been a year already since I last sat behind the wheel of a car. How I miss the freedom it represented. And in a few days it will be a year since I gave up work. Time sure is flying by. But even more significant is the fact that anytime now it will have been two years since my first symptoms presented. Had I been Mr Unlucky and had the very aggressive form of MND it could all very well have been over in six months. But I would guess from my own rate of disease progression that I’m probably following an average or (fingers crossed) slightly slower path. MND affects each person in very different ways and each will experience it at different rates. Statistically (if these things are to be believed) it is said that average life expectancy with the most common form of MND (which is the one I’m told I have) is 2-5 years from onset. Of course we all hope to be a Mr Lucky where 10% of people beat the odds and go on to live considerably longer. Only time will tell.

My health continues to decline as the disease maintains its relentless progression. I was going to put a few words together in this blog entry but the range of symptoms and their effects on me are sufficient to warrant a more comprehensive description so that will be the subject of the next blog entry. Suffice it to say for now that the cumulative effect of two years of nerve decay and muscle wasting is really starting to make life difficult for me and is causing me some concern as I know that things cannot stay as they are for too much longer and I will have no choice but to relinquish more tasks. I feel so very tired and weak all the time. That’s what I notice most, particularly these past couple of months. It sometimes feels like all the life energy is seeping away from me. Goodness knows what I’ll be like should I survive another 500 days – I dread to think.

Over the past week I’ve been taking the first tentative steps (quite literally) in getting back to my regular walks around the housing estate. I enjoy walking especially as it has been one of the last outdoor physical activities I could still do on my own. But after months of inactivity staying mostly indoors hibernating through the winter months I was starting to get curious as to what my physical limitations might be. Francesca, my friend and carer accompanied me on my first walk of the year, a 30 minute stroll around the neighbourhood. But I found myself struggling for breath a little when trying to chat whilst walking. Since then I’ve been out a small number of times by myself; the first couple of walks lasting an hour long but I soon cut this back when my legs started feeling very weak and I became concerned if I could even make it back home without collapsing. My confidence took a battering as I’ve always had good strong legs and have been capable of walking and cycling many miles. But rather than let it beat me I just cut the duration of my walks back and made sure I rested along the way. So at the moment I take a 20 minute walk through the nearby field, rest for 10 minutes on a footpath bench and then take the walk home which lasts another 20 minutes. So far that seems a little better but I still don’t have the confidence to tackle the longer walks (especially on my own). And to think that last autumn I was regularly walking a 2 hour 6-mile route.

So are my weakened legs purely down to disease progression or is it partly attributable to leading a sedentary lifestyle and not getting enough exercise? I suspect it is a combination of factors. My legs are certainly showing signs of wasting but sitting at a computer for hours is not helping either. Although I don’t believe that exercise will cure the problem completely I am keeping my fingers crossed that it will at least have some beneficial effect.

For the most part I’ve been cocooned in the house these past few months snuggled up in the warmth. There’s been little incentive to actually want to go out, although I did feel a tremendous sense of frustration when we suffered our worst snowfall in years last month and I was unable to take advantage of it by going out and taking some pictures with my camera. I might very well have been snuggled up in the warm but it didn’t stop me from meeting people as these days there is a regular stream of visits from Occupational Therapists, the MND Association Visitor, District Nurse, REMAP engineer, Council workers and of course my carers. So I hardly feel lonely! But there have also been a couple of opportunities to meet up with my friends from Eli Lilly for pub lunches; once in mid February at the Queens Arms – a favourite location for us in the run up to leaving (and one that still serves particularly good food); and once, earlier this month at the Portsmouth Arms. Bill, Carry, as always it was good to see you both. Kim, Jane, it was especially nice to see you both after a long absence. Thanks to all of you for coming. Robin, it was great to meet up with you too. I enjoyed our afternoon chat.

And that brings us almost up to date again. Before I sign off let me just say a few things about my two recent hospital appointments. A week ago I was up at the Basingstoke & North Hants hospital for my latest lung function test. I found it noticeably more difficult (particularly on the exhale) then the previous one and therefore didn’t have a particularly high expectation of the test results when I met with my Consultant Neurologist for our 4-monthly appointment yesterday. Mind you I’d said the same thing last time and been proved wrong when the test results showed no change. Unfortunately my fears this time were confirmed. The results came back showing a significant drop in respiratory performance indicating that the breathing muscles are now being affected. Be that as it may it hasn’t yet affected my sleep although it could be only a matter of time. It’s harder for a person to breath when lying horizontal as we don’t have the assistance of gravity and depend on the muscles around the shoulder girdle. As these are wasting away in my case it will eventually make it hard to get a good night’s rest. In addition to asking me questions about any sleeping difficulties my Neurologist asked if I was getting headaches and how I felt in the mornings. Well I do get the occasional headache but I’ve been putting that down to spending too many hours sat looking at a computer screen because pushing buttons is one of the few remaining things I can do. I feel lethargic when I wake up in the morning and it takes me a while to get going.

Because of the significance of these results my Neurologist wants to arrange for me to have some further and more comprehensive tests performed down in Southampton where they are better equipped to care for people with MND. Should these tests confirm the accuracy of my last test and show further deterioration then I will be presented with some choices to make regarding treatment and how we move forward. In my case what we’re looking at is the possibility of some form of assisted ventilation during the nights to help ensure I get a good night’s rest, as well as preparation for assisted feeding. With a complex disease like MND timely intervention is often required if each symptom is to be managed effectively. So although some of these things may not be used straight away they still need to be considered whilst my body has the strength. I must admit that I was taken back a bit by the things we were discussing as I hadn’t realised I had reached that stage already. It will take me some time to consider the ramifications of the choices and I’ll only be able to do that after I’ve had a chance to discuss it with some of my health care team.

We also talked a little about the walking exercises I’ve just started up again and I explained about the weakness and slight difficulty in breathing I was experiencing whilst walking. I asked if exercise had been shown to have any impact on the disease i.e. could walking accelerate or slow down the disease progression? I was told that it has no effect and that I should still try to exercise as there were other health benefits.

So there we are, I’ve survived another hundred days but the accumulation of symptoms is reaching a point where life is becoming very difficult as the disease becomes more intrusive. This latest visit to the Neurologist has given me cause for concern and plenty to think about. I feel that it won’t be long before I need to make further adjustments in my lifestyle.

Before I go I’d like to say a big thank you to both Alison & Francesca who gave up their time to accompany me yesterday. Thanks girls, it was very much appreciated – as always.

Mark

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Home automation – first steps

Living alone with a debilitating disease like MND brings with it a whole range of problems that are not experienced to the same degree when there is always someone else around to lend a hand. Of course even in these cases a person is likely to want to preserve as much independence and dignity as possible. Now that I have homecare I at least have a couple of opportunities each day to ask for help from one of my carers. But for most of the day I am by myself and as my body gradually fails I will have an increasing need for some kind of assistive technology if I am to be able to interact with the house environment at even a basic level.

Fortunately, Marion, my Adult Services Occupational Therapist has been keeping on top of things and looking much further ahead than I’ve been. She’s recognised for some time now that I would need an environmental control system, a sort of home automation hub that could hook up to various appliances throughout the house and to be able to control them from a centralised location with minimal physical effort. I did have an assessment for one of these not long after I left work last year but at the time the consultant in rehabilitation medicine felt that it was a bit premature and that I still had a fair bit of mobility. However, by late October when I had my second assessment my (upper limb) physical abilities had deteriorated sufficiently to convince her that there was now becoming a need. So after being shown various systems we settled on the Possum Primo!

Specification sheet for Possum Primo environmental control system

Shortly before Christmas my OT (Occupational Therapist) and a representative from Possum paid me a visit to discuss my initial needs which were to have a door entry and intercom system installed. This would allow me to determine who was at the front door and to remotely open it – from either the living room or from my upstairs study. They’d also come to assess the work required so that a quote could be sent to the council (the cost of the work was being met from the Adult Services budget). I was told that it would take about eight weeks to get the budget approval so I figured that allowing for Christmas I would probably not see anything installed until March. I was therefore rather surprised when I was contacted in late January to say that I was being fast tracked and that an electrician from Liftech (Possum were too expensive on their bid for the door openers) would be calling the following day to install the spur extensions and 13amp sockets that would be required to power the front door and hallway doors.

So the next day the electrician called round and within three hours had all the sockets and cables in place in the hallway and near the exit from the living room. A day later the fitter from Liftech arrived and spent the whole day with me working through until 7pm installing the motors, door opening arms, control box, the various switches in the hallway and living room, and the proximity sensor mounted on the outside of the house. I’d chosen to have the door opening switches mounted at the same height as when my arms are hanging naturally by my side, that way it would require little effort to operate them. In fact I could even ‘bump’ up against the wall if necessary.

Door opener on interior living room door

For me to get into the house now requires the use of a special proximity watch which looks quite normal when worn around the wrist. But when the watch face is pressed up against the proximity sensor on the wall it activates the door opener. The door will fully open for a preset time before closing by itself again. The doors can be kept open by leaving the interior switches depressed – ideal when bringing shopping in for example. Although the door is now effectively a keyless design I can still open it by using the original key and in fact I always take it with me as a backup – just in case the technology fails. Unfortunately the watch is fitted with a buckle strap as opposed to a bracelet clamp so I need the help of one of my carers to put it on and take it off.

An engineer from Possum and a technician from Adult Services turned up the next day to install the intercom systems, which required some cabling through the hallway, living room, stairway and study. I now have the ability to use a few pre-recorded voice responses or to speak into the intercom myself which is an almost hands free design and can therefore sit on a table. You only need to touch the membrane keys twice; once to start speaking and once to open the door. Having this system in place will prove particularly useful for the time I spend at my desktop PC in the study as I can no longer run quickly down the stairs to answer the door.

Intercom and Environmental Control System

The main piece of kit to be installed was the Possum Primo! environmental control system. This device with its touch sensitive screen has the ability to not only capture the infra-red codes of various remote controlled devices such as TVs, DVD players, Sky boxes etc. but can also be wired into other systems which in my case meant the doors and intercoms. Using the touch screen when mounted on its stand would be quite an effort for my arms; in fact I’d need to support one arm with the other and couldn’t do it for log anyway. So to make life easier for me Possum have supplied a switch connected by cable to the Primo! that can be triggered using a hand or foot. I’ve got it resting on the arm of the sofa. Pressing it once activates the Primo! Pressing it a second time causes the display to go into scan mode and cycle through the options available e.g. activate intercom greeting/speak, open front door etc. So to some degree I have some duplication of functions but over time the Primo! will come into its own as various tasks are assigned to it. The first of these was to plug the TV into an infra-red activated wall socket adaptor so that I can switch the TV on via the Primo! rather than swinging my arm high so that it lands on the top of the flat screen where the controls are.

I’d had electricians and fitters in over the course of three days and been pleased with everything they’d done. It all looked neat and tidy although I must say that I now have a hallway that’s starting to resemble an electricity sub-station with all the boxes and cables mounted at ceiling height, their status lights glowing brightly and a low hum constantly emanating from everything. But it’s done and is already making life easier.

Hallway electrics and front door opener

And already Marion and I are looking at the next step which will be to fit electrically operated curtain pullers and these too will be controlled via the environmental control system.

By the time I’m finished I’ll have a home so automated that it will be like the secret lair of one of James Bond’s arch enemies :-).

I am indebted do my friend, Robin Taylor, who kindly took the photos I needed to illustrate this article. I just did all the post processing. Thank you, Robin.

Mark

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