Two weeks later…

I’ve now embarked on the next chapter of my life! This is the one where I am unemployed, progressively becoming more disabled, terminally ill and unable to drive! So not a good chapter! :-(. Anyway life is what you make it… 😀

How quickly the time flies by. Here we are and already its been two weeks since my working life ended and I moved into early retirement (that’s the way I try to positively see it). It just doesn’t seem possible. But then I cast my mind back and realise how busy I’ve been and how many appointments I’ve had so perhaps it is no wonder that time seems to have slipped by almost unnoticed. Lately it seems that I’ve been having far more meetings then I ever did when I was at work. I think I need a holiday from my retirement!

All the health care professionals that are looking after me in one capacity or another were aware of my finishing date and so had arranged for themselves to pay visits during these first few weeks. Nothing strange there except that now they were free to call anytime during the day instead of straight after work or in the evenings. My first week kicked off with a visit from a lady Doctor who had called to perform an Environmental Controls Assessment. This is basically to see how technology can assist you in your daily activities so this will become particularly important as the disease progresses and mobility is impaired. Think of it in terms of an all-singing all-dancing remote control unit that can be used to control such things as switching lights and fans on and off, opening and closing the curtains, operating the TV, Hi-Fi and telephone, controlling the heating, opening doors and taking the dog for a walk (well maybe not that last one). But it soon became obvious that all the things the systems were capable of helping with were tasks that at present I had no difficulty performing. For instance, in my house light switches are fitted at waist level so I don’t have to struggle to raise my arms. Curtains are on wooden poles and slide freely when pulled from the bottom. My two cordless phones (one in the living room and one upstairs by my desk) have a hands-free mode so I can talk whilst doing other things. And of course home entertainment equipment already have their own remotes that would in any case offer a greater range of functions although I appreciate the desire to centralise everything lest you end up with a bed covered in remotes. In conclusion it was decided that it would be premature to start installing the various control units at this time so I guess I’ll be assessed again at some (hopefully far off) future time when I start to loose mobility in my legs and need to control things from a single location.

The following day I had a visit from my MND Association visitor. She calls round on a monthly basis and is my link with the MND Association. It was really just a chance to chat and to discuss any issues I might have had (which I didn’t). She told me that she had just come straight from an MNDA meeting where my name was mentioned and would I like to come along next week to the AGM where a guest speaker from head office was due to give a talk on current research into the disease? Well I jumped at the opportunity not because I’m a fan of AGM’s but because it would give me a chance to finally hear first hand what the state of research is. Up till now all my knowledge on the subject had been gathered through endless hours of researching the Internet so an opportunity to hear it direct from the charity that does so much to care for people with the disease in this country was not to be passed up.

The next day I had an unscheduled visit from a nurse and a student nurse who just suddenly turned up at my door wanting to perform an assessment for continuing care on behalf of the NHS. If I qualify then it means that my care costs will be met by the NHS Primary Care Trust. Considering how much care can cost these days and how little income I now have I’m hoping that with a disease such as this I’ll qualify. The two people I met knew nothing about MND so I had to make sure that they were fully aware of the nature of the disease, how unpredictable it is and how each person’s experiences can be quite unique. I didn’t want them to just see me walking about and make the wrong assumptions based on what their eyes told them and just because in my case I have upper-limb onset. It felt quite strange me explaining to the nurses some of the things I had learnt about the disease plus of course going into my own personal experiences and difficulties.

The following Wednesday saw me catch a bus over to Chineham on the other side of town to attend the AGM for the North Hants branch of the MNDA. Of course the real attraction for me was the research talk. But I was also curious to meet other people who were living with the disease – yes, that’s how I am now describing it ‘living with MND’ not ‘dying from MND’. Ultimately it may not make a blind bit of difference except to help achieve a more positive attitude and you certainly need that if you are going to fight it. I guess my preconceptions before entering the community centre/church were of a group of people pulled together by a common disease and visibly showing it! But perhaps I should have taken a closer look in the mirror first and realised that until the later stages are reached it is quite possible to look for all intents quite normal from a cursory glance. Indeed if someone were to see me walking down the street they would not know that I have MND. But they most certainly would know I was at least disabled as soon as I tried to use my arms. So perhaps it should have come as no surprise to see so many ‘normal’ looking people at least to my untrained eyes. Of course not everyone there had the disease anyway. Some were family members, others were carers whilst yet more were from the NHS and Adult Services here for the talk and to gain some much needed background information on this uncommon disease. But as I scanned around the audience both looking and listening I began to notice the signs. I saw an elderly man with stiff straight arms being helped gingerly into his seat – an easy one to recognise as his symptoms mirrored my own. And over to my right I could hear a man talking slowly trying hard to form each word with a tongue that refused to cooperate. Of course not everyone was so ‘invisible’; one poor lady I saw had been suffering from MND for 15 years I believe, and sadly the disease had taken its toll robbing her of her mobility and confining her to a powered wheelchair with neck support. Nevertheless she had beaten the odds already by a considerable margin – no mean achievement. But I must admit that seeing her did shake me up a bit despite already being all too aware of what this highly destructive disease is capable of. But seeing someone ‘in the flesh’ suffer like this rather then just reading about the effects can be pretty scary when you have the disease yourself because it forces you to think about your own future – something I’m trying hard not to do as I want to enjoy the here and now whilst I still can. Sad to say that I didn’t really learn much from the talk itself that I hadn’t already found out myself in the past five months of scouring the Internet in search of hope and understanding. But nevertheless it gave me my first opportunity to meet some fellow sufferers and to know that I am not alone with it here in Basingstoke. And to round things off for the day I had my monthly meeting with my NHS Primary Care Occupational Therapist in the afternoon. Phew, busy day!

On Thursday afternoon I had a joint visit from another regular Occupational Therapist, this time from Adult Services (formally Social Services), and a lady who introduced herself as my Care Manager. So now at last I have been allocated one and she will be responsible for drawing up a care package for me. But for now my stubbornness and determination to lead life as independently as possible has won through yet again and I’ve declined all offers of help (much to their frustration I suspect) – but only for now. It’s not the first time I’ve received offers of help, in fact I’ve been getting them since not long after diagnosis. But this desire to remain independent is one of the ways I fight the disease and I’ve said since the beginning that I will lead life by my terms where possible and not have it dictated by the disease. So for me everyday that I am able to wash myself, dress myself and feed myself is a day of victory. Sure, I had to give up driving but a car is a killing machine and I won’t take risks with other people’s lives. Besides, I have some idea of what my own limitations are and as Clint Eastwood once said in a Dirty Harry film ‘A man’s got to know his limitations’! But ultimately I realise that MND is a disease that does not allow for the luxury of independent living and there is going to come a time when I will regrettably have to relinquish some of this independence.

I had my last appointment of the week early Friday morning. My GP just wanted a quick mental health check, just to make sure that I was okay emotionally after all the recent turmoil which started with giving up driving, then work and on top of that the worsening condition with my arms and hands. After a lengthy chat in which I attempted to give her a rundown of all the things I’d been doing to keep myself busy and my mind active she seemed convinced that I was handling things okay. In fact she remarked that I looked far better then the last time we met – an opinion shared by my Primary Care OT. I guess turning up at the surgery dressed only in Bermuda shorts, wearing flippers and a snorkel and clutching a large inflatable Dolphin might have had something to do with it! 🙂

So, apart from all the appointments what else have I been doing? Well, walking and lots of it actually. My arms and hands are steadily becoming as much use as a chocolate teapot but so far (touch wood) my legs remain strong and I’m trying to make the most of them whilst I still can. So practically everyday I’ve been out walking for an hour or more…sometimes a lot more. For instance on the first week I had this spur of the moment idea to walk to the village of Oakley. Now I’ve done this circuit many times over the past few years but it has always been on my bike quite often after work on a summers evening when it would take me about an hour to cycle the 12 miles (approx 19km). I was just curious to see how long it would take on foot! So off I went, not a care in the world, just wanting to enjoy the fresh air and the lovely sunny weather. It’s a nice time of the year for walking – not too hot. All the trees are either in blossom or starting to leaf. The daffodils are out, the tulips are out…not sure if all these things are supposed to be out at the same time, mind you. Perhaps it’s our mixed up environment. Personally I blame it on the green fly effect (okay, greenhouse if you want to spoil my fun). But certainly this is a beautiful time to be out in the fresh air – a chance for renewal as nature wakes up with colourful displays. In fact spring and autumn are my favourite seasons and whenever I get the chance I like to be hopping, skipping and a jumping down the country lanes – well not literally but you get the idea. So how did I do on my walk? Well I was back home in just under four hours. My legs still felt strong and not about to collapse from under me and my breathing was quite normal too – these are two of the disease indicators I monitor when out walking but so far it would seem that my breathing muscles are working normally. Ironically it was my shoulder joints that hurt the most. Normally my arms are supported on tables, desks, cushions or armrests all day. Having my arms dangling by my side for four hours put a lot of strain on an area that has already lost a lot of muscle tissue. In fact my left shoulder (the weakest) started to hurt after two hours and by the third hour they were both aching a lot. They ached all evening but after a very good night’s rest I felt fine again the next day.

So there we are, my first two weeks over and done already. I hope that the above has given you some idea of what life has been like for me as I’ve painted in as much detail as my weak hands allow – and that’s the biggest worry I have at the moment; my hands are getting quite bad, but I’ll cover that in more detail some other time. Apart from that how do I feel? Well, okay really. At the moment it doesn’t feel strange at all being home all the time. It feels more like I’ve just taken a couple of week’s holiday. I guess that as the weeks turn to a month or more I’ll start to wonder when I’m going back but at the moment everything is fine. Now that all the appointments are behind me I’ll have more chance to rest and do my own thing at my own pace. In fact that is one thing I really appreciate now – the ability to wake up much later and get up in my own time and for that I feel much better. I used to feel exhausted even before I left the house in the morning but now I am able to relax more and to slow the pace of life down.

My hands are really getting tired now and this weblog has taken quite a few hours to write so time to sign off. Just before I go let me thank those of you who have been kind enough to send emails or phoned me up for a chat these past couple of weeks. They have been very much appreciated.

Mark

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