Experience 2

My name is Argyll McLetchie married with two grown up children. I'm now aged 55 and up until December 1999 I had a senior management role within Siemens in the UK based at Bracknell. On the evening of December 20th '99 I suffered a sub-arachnoid haemorrhage complicated by vasospasm resulting in left side hemiparesis (in layman's terms I lost most of the power in my complete left-hand side). Despite various tests performed by the Neuro surgical unit in Southampton Hospital no 'root cause' (I have never smoked, did not have any blood pressure problems and there were no family hereditary brain problems) for my haemorrhage was discovered and I was discharged from hospital by end of January 2000. For a while I worried about the possibility of having another haemorrhage but reassurances from my neuro-surgeon ('we have examined (CTC and MRI scans) your brain in so many ways that I have more chance of having a haemorrhage than you!') eased my immediate anxiety albeit as no root cause had been found ( see above) it preyed in the back of my mind for a while.

Physical

One of my first post hospital release actions was to visit a physiotherapist who, proposed a programme of twice weekly visits. In addition to focusing on the main deficiencies on my left side, these regular visits were extended to include such activities as ball catching, a 'wee' bit of trampolining and even some skipping. All of these activities helped introduce an element of humour into the proceedings as I came to recognise that it would take some time and considerable effort to achieve anything like my pre-haemorrhage capabilities. As an aside I believe that maintaining some element of humour throughout your recovery process is an important ingredient on the road to getting better. In addition to the regular visits I used to do additional exercises at home and cannot emphasise enough the benefit that I got out of using a small trampoline. Start with simple exercises whilst you start to feel more comfortable re balance and build up from there. Small rubber exercise balls for the hand and hand exercise 'spring grip' also helped considerably in improving hand movement and co-ordination.

Overall co-ordination was improved by the simple exercise of throwing a ball against a wall using alternative hands to both throw and catch. In parallel with the physiotherapy I was advised to try swimming and so, greatly helped by a good friend of mine who supplied lots of encouragement and motivation, I started a Tuesday and Friday visit to the nearby pool. I strongly advocate the use of swimming in the recovery process...not only should it be beneficial but also helps fill a gap in your 'diary' and should be something that you look forward to.

I had three major areas of real frustration in these days that I'd like to share:

Handwriting

Being left-handed I had great difficulty in writing legibly with being unable to write my own signature was the main frustration. I practised my handwriting religiously and gradually I was able to produce something like the original albeit even today it is not the same – using a pen with rubber support towards the nib (PILOT G –2 07) helped considerably.

Eating

Similarly I had problems using a knife and fork and felt frequently embarrassed if eating out on any family occasions (family birthdays etc) – there was no miracle solution to this one with practice and patience being only way forward.

Fatigue/fatigue/fatigue

I had read in hospital leaflets that 'fatigue is very common following any serious illness' but really I was totally unprepared by the impact that fatigue, both physical and mental, played and indeed, still play during my recovery period. My clinical neuro psychologist (of more later), got me to keep a daily log of both mental and physical activities along with a simple grading system of 1 – 5 to document how fresh or tired I was during each activity

Mental

Having covered the important role of a physiotherapist in the recovery process it is now time to introduce another key player, namely that of the clinical neuro psychologist. Just to sit and talk (I was doing most of the talking) about your situation, including how you felt about certain things/events, was very therapeutic. One area of frustration for me centred around 'making mistakes'...I would feel down and inadequate whenever I made a 'boo boo' whether large or small. It was during such a discussion regarding an incident, ( I used to help out in my friend's newsagents for an hour or so on a Saturday morning) where I had wrongly given out change for £5 instead of £10, that she stopped me in my tracks with the words 'so you never made a mistake prior to your illness'. This was indeed a profound moment for me. I had instinctively been blaming all mistakes on my illness and in reality I suppose some, but in no way all, were attributable to my haemorrhage. This single incident helped my future self- confidence considerably. Another major area where I received invaluable help and guidance was discussing strategies to compensate for cognitive problems or deficiencies (e.g. phone calls).

Similarly benefit was gained from discussion around the topic of a return to work and the possible scenarios therein. My immediate post illness attitude had been one of 'get back to my previous role as soon as possible' but in the following months, as realism set in that I did not have my full pre-illness capabilities, consideration of potential alternatives (roles, projects, or specific activities) was a valuable exercise. I can't recall who said to me 'you'll be the best person to judge if you are ready to return to work or not' but at the time I was sceptical and believed that it would be medical opinion that would be the prime sway in the decision. However it really was true, as in the end after considerable and logical analysis of my situation I came to the conclusion that I could not make a return to work in anything like the role I had before and therefore accepted the offer of ill health retirement. I attended meetings with clinical neuro psychologist for more than a year and found every session to be beneficial in some way including help me tackle the following which were my biggest 'mental' challenges

Multi-tasking

I still struggle to keep focused on more than one activity at a time. Best example of this problem area is when I'm on the phone and then someone starts talking to me. It is the same when I'm working on my PC and there is background noise e.g. the T.V. In relation to phone calls, an area which still requires quite a bit of concentration, I found that the discipline of planning in advance what I need to achieve and then also documenting answers given, has helped to improve what were pretty unproductive calls in the early days.

Taking decisions/Self Confident

Again, another area, which was second nature to me in a work environment but where I became less effective and lacking. However, I feel that I am getting better and more self-assured with time. I think that both are closely related and indeed link to 'making errors' that I referred to earlier. I cringe to think how many items I've put back on the shelf in the local supermarket when deciding what was to be on the lunch/dinner menu. As a slight aside I encourage any wives/helpers reading this to allow the haemorrhage sufferer the autonomy to make his/her own decisions and run with whatever minor consequences may occur. Let him/her start small (e.g. what to have for lunch) but then allow flexibility to, as a minimum to participate in, if not take wider reaching decisions.

Control of emotions

I was always able to keep in control of my emotions in a variety of circumstance and indeed conceal my feelings from those around me. I would say that I have cried more in the past 2 years than in the previous 50

Impatience

I've always been known as an impatient person and I can safely say that I've got worse!!  Queues, procrastination, 'pussy footing' around, being late for anything, all really bug me. Now that all of the mental turmoil associated with whether I would be returning to work or not is now behind me I see a gradual improvement but no further promises!!!!

Returning to Work

As stated above my immediate post illness attitude had been one of 'get back to my previous role as soon as possible.' But, as I guess with most brain illness, the extent of, and associated time scales, with recovery cannot be 'black a and white' or specific. So for a considerable time, in my case a year +, I really didn't know if I would return and secondly if so in what capacity. I spent considerable time, thought and energy around returning or not to work. It was the one thing that kept me awake at night and looking back on the first one to two years was the biggest 'non recovery' issue that I had to face.

General

Following, in no particular sequence, are a series of general areas, which I believe are worthy of mention:

Value of a pet

Prior to my illness our family Labrador, Ben, played an important role in my life with amongst other things, walks along the beach/park being a regular theme of weekends and, if I was home at a reasonable time, also evenings. Once I got out of hospital he was to play a major role in my recovery process. I must have been stroked him several hundred times a day and it was always reassuring to have him there and that loving look from his eyes provided many a 'lift up' for me.. It was refreshing to have him near yet not having to make any conversation, including answering questions re one's well being (see below). I know that I am biased and was fortunate to have such a wonderful ally in my getting better but I guess that any pet could provide similar stimulus and support

Timescales for an extent of recovery?

I'm sure that my Neurosurgeon, and indeed any other medical person that has helped me, were fed up of me asking about the above. In my working environment clear scope and defined milestones were fundamentals in running an effective group. It took me some time to appreciate that in a brain injury there are no black and white answers to the above. You will be given the most accurate information available about your condition but it cannot be definitive. At this point I should emphasise the importance of honestly managing the  patient's expectations. I guess around six months after my initial haemorrhage I was told that it was 'likely that I would not regain all of my pre-haemorrhage mental capabilities' and 'it was unusual for patients to be able to resume a senior management role'. Although I found both bits of information somewhat down heartening at the time I accepted them and then concentrated my energies once again on trying to make the best possible recovery

Look forward

A fundamental message is not to feel sorry for oneself and wonder 'why did this happen to me'. The hard fact is that it DID and there is nothing that you or anyone else can do about it. Although it will be a challenge you should try and be as positive as you can and you will need to concentrate all of your energies on your recovery in order to maximise your getting better. The above summary was produced about two years after my haemorrhage and now a further two and a half years on I am now enjoying retirement.