I will start this blog with a picture, it's quite a positive quote, it seemed to sum up what it is like to have a stroke and to survive. This post deals with some difficult issues and at times they appear to be an all consuming fire and unless you fight you will be swallowed up.
Life started to settle down into a regular routine of hospital, GP, rehab, walks etc. There were a number of things that I was waiting for. One of which was a neurological assessment by a consultant psychologist. This had been arranged and then cancelled as the psychologist was off sick. I was concerned about the assessment as it was to look further into the problems I was having thinking.
They day came and the assessment took 4.5 hours to undertake. After this I was totally exhausted mentally and it took several days to recover. I found the process interesting as it used a lot of testing that was statistically based and as I had done a degree in statistics it was something I could understand. The results of the assessment were quite distressing. The good news was I was described as follows:
Mr Swales is a Superior-functioning individual whose verbal and non-verbal effectiveness place him between the 99th and 95th percentiles. These levels are slight underestimates.
This is a direct quote and the scoring was based on some baseline knowledge tests that did not require significant brain power to do. The recognition of this is something that was important to me as the previous tests did not take into account my abilities before the test and certainly took no account of my age. The previous tests made me look good as I was being compared to other stroke survivors who were typically 25-30 years older than me.
The tests continued and I did some well and some badly dependent on what they were. The tests I recall were:
Colours were written in a different colour to the word. I've the word blue was written in red ink. I had to say the colour of the ink. I knew that I struggled with the exercise as I took a long time and made a few errors. When the results came back I was shocked. I had scored in the zero percentile. This meant that compared to the non brain injured population I would have finished bottom.
I had to name as many animals and fruit alternating between the two, I think they had to begin with certain letters as well. Although I was accurate and switched well between the categories I didn't name enough to have a score that counted. I.e. I was in the zero percentile.
I had to link letters and number in increasing order I.e. 1-a-2-b-3-c etc. I knew I had done badly and the result showed this as I was in the 35th percentile.
The tower of Hanoi. When I saw this test come up I was really confident as I used to do this a lot as a child. I decided to be methodical about the exercise as I knew that was the key. I managed to do all of the tasks and although I knew I was slow I was pleased. Unfortunately I was a lot worse than I thought. I was accurate and did get to the right answers I took a lot more moves and time than I was supposed to. I was back into the zero percentile again.
I had to describe a word that was given and these increased in difficulty and became more abstract. I would get points depending on how I described the word 5 marks for a perfect answer. An example was the word yesterday. All I could say that it wasn't today and pointed backwards. I got 2 marks. The correct answer was the day before today. I could not find the correct definition even though I knew what it was. I did okay on this test but only around the 40th percentile.
There were other tests but I don't recall them. When looking at my performance the consultant said that it was important to compare how I did compared to the baseline assessments of a superior functioning individual as this would show the level of impairment that I suffered. It was clear from this that I had significant impairment in some areas.
The conclusion of the report was that I have a pronounced impairment of my executive function. The report stated:
Executive demands, however, reduce his efficacy from the 95th through to the 77th to the 0th percentiles for Working Memory, Verbal Fluency and Paced Mental Control/Inhibition.
Executive demands compromise Mr Swales’ effectiveness, and time pressure especially impairs it. He is highly susceptible to distraction, interference and intrusive errors. He is unable to martial his abilities, to regain and to redirect focus on the problem, and to generate a solution within prescribed time constraints.
The report also said that it could take up to a year of specialised rehabilitation before I would get back to my pre-stroke abilities. As I haven't yet started this rehab (my rehab starts in September 2016) it is a very long time away.
The report was quite a shock and was enormously upsetting. The psychologist also stated that I was depressed. I had realised that I had days that were difficult emotionally but this was the first time someone described it as depression. I have read up a lot about stroke and it is very clear that depression is a common occurrence in stroke survivors particularly those who are still of working age.
There have been many days when things have got too much for me and it is difficult to deal with those emotions. I tried not to show these emotions too much as I am not used to being emotional in public or in private for that matter. I didn't want to show I was weak to Stephanie or the children.
I had a GP appointment early one morning and I was in the waiting room by myself. I was looking round the walls and seeing the illnesses and things that people suffered from. All I could think of was that my life consisted of an endless procession of appointments, with people telling me it will all be alright. But it was simply not true. Things will never be alright, I will always have to deal with some impact of my stroke whether it was the eyesight, problems with words or thinking. At that moment it got too much for me and I started crying in the doctors surgery. Fortunately my GP called me in at that point. He was very good and reassuring and he was able to talk about what I was feeling. He did prescribe anti depressants and arranged for another appointment. He also set up some counselling to help. It's hard to describe how I felt and although I had become depressed recently I started to appreciate how debilitating it can be.
I know that i am a strong person and that the fire inside of me burns bright, but there are times when that fire dims but i know that it will not be extinguished. I will not let my stroke ruin my life. There is so much more I want to do - I might not know what but my stroke will not define my life.
All my posts at the moment seem to be describing bad times. I do have good times as well and things do get better. However, I am sure I will get into the topic of depression again, but I will leave it for the time being.
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