I haven't posted for a little while and thought it was about time that I did an update. It's difficult to remember all the things that were happening at this time. There were lots of appointments for various issues associated with my stroke. The one thing I hadn't heard about was an appointment about my loss of eyesight. I was told that I would hear from the orthoptist about an evaluation. I decided to phone the stroke service and ask. This is the only part of my care that fell below a high standard. Over a couple of days I left messages on the answer machine but no response. After a number of tries I managed to get hold of someone who said that someone would phone me back later that day. No one phoned. I have noticed since my stroke that I get very anxious about what people say and do. I was starting to get stressed about this as an issue. I phoned again and was told the same thing and there was still no phone call. I did have to go to the hospital for a blood test so I stopped by the office. I managed to catch my boss and mentioned that there had been no contact from the eye service. It is the only time that I have used my employment to bypass a system. I had a phone call that day and an emergency appointment the following day. The person apologised as I had slipped through the system and should have had the appointment a couple of weeks after the stroke.
I went to the appointment the next day and my eyesight was assessed. It didn't tell me anything new but I was told that it was unlikely to recover the eyesight loss as the majority of improvement comes in the first couple of days. Any change beyond would be slow and marginal. The tests undertaken would set a benchmark for future tests to be compared against. After the orthoptist I met with the low vision coordinator who spoke to me about the various organisations that assisted with sight loss. The one devastating news was that it was suggested that I returned my driving licence. Although I had suspected that this was a likely outcome it still comes as a shock. If you are a driver think about how much your life would change if you were told you can never drive again. For me it was about a total loss of independence. I could never just nip into town, go to get DIY supplies or take rubbish to the dump. More dramatically it would mean reliance on others for longer trips such as visiting the children, other relatives or holiday trips. In the past I have always done all of the longer trips. I don't really know why but that's one of my "jobs" in the family. I must have looked down about being told to return my driving licence as later that day I had a call from my GP's surgery enquiring after my mental health. I was asked if I thought I might hurt myself. My answer was emphatically no!! Although I know I was depressed I have never once considered harming myself. I understand why I got the call and it was appreciated.
The request to return my licence brought into sharp focus our impending holiday to America. The planned holiday involved a significant amount of driving (almost 2,000 miles) and I was the only one who was able to drive the hire car. Stephanie had got a great deal on car hire many months previously. We contacted the company and they would not accept a change to the main driver as it would have to be a new contract. It was going to cost £500 more and they would not allow Ben to drive as he was under 25. Eventually we found a car hire company that would accept Ben as a driver but it was a lot more expensive than the previous deal.
We started to look into how our holiday insurance would be affected. We had taken previously taken out a family annual travel policy with Barclays. Although I anticipated that they would want an increased premium I didn't expect them to refuse to insure me. I understand that they have to manage risk but to turn round and say no we wont insure you was a surprise. I tried a few places and was surprised by one insurer which had a very cheap policy. It wasn't until i saw the exclusions that I realised the reason. There were exclusions for anything to do with stroke, diabetes or kidney stones. I had another quote of £2,500 for just the time of our holiday. We eventually managed to find a more reasonable policy that only cost an additional £300.
Even with the added expense there was still the question of whether I should travel anyway. I had been advised that there was no medical reason why I should not fly. It was always caveated with the proviso that I would have to feel up to it. I was always told that I would have to take things easy while I was there. After a lot of thought I decided that it was best for the family as a whole to go on the holiday. We had been planning for it for so long to cancel now would be a very negative thing to do. Cancelling would have been bad for my depression and would have added to the guilt that I had been feeling since my stroke.
I am not sure what else to add at this point, its not been the best of posts but it isn't always doom and gloom. Someone did say that I should note down some of the silly things I have done since my stroke. I will share one now.
I was on hold to speak to someone and it was taking ages. I decided to not waste the time and started to clean out the aquarium. Instead of putting the phone on speaker i decided to hold it with my shoulder. I am sure you have guessed that i managed to drop the phone into the aquarium. Whilst that was a silly thing to do it is not the point of this story. My sister in law told Stephanie that the best thing to do was to put the phone in a plastic bag with some rice and put it in the airing cupboard. I said I would do this and went away and sorted it out. Go forward a couple of days and Stephanie remembered the phone and asked me to get it out of the airing cupboard. I replied that I hadn't put it in the airing cupboard but had left it in the freezer. Believe you me, it was totally finished off after a few days at minus twenty. In my defence I must have got confused as I had got out a freezer bag!!
To all of you who are saying "that's the sort of thing that I do" remember you may do forgetful tings occasionally but I do it all the time. I know that old age has an impact on memory and that as you get older forgetful things do increase. My stroke aged my brain by thirty years in a matter of moments, that is the reality that I am facing. The good news is that as I recover my brain will find ways to rewire itself and I will hopefully have a brain that's the same age as the rest of my body.
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.
My wish for one day:
I will wake up and not have to think what challenge I will face today
I will not have to explain why I struggle with words
I will think without my mind twisting itself inside out
I will not have to face things about my life that scare me
I will not face things in my life that make me sad
I will be able to read a book or watch a film
I will not feel guilty for not working
I will be able to return to my job and not worry about failing
I will feel confident about going for a run
I will remember the name of everyone I meet
I will be spontaneous and not plan everything I do
I will not do ridiculous things however funny
I will not worry about bumping into people and saying sorry
I will not feel so tired that the least action exhausts me
My wish for one day is that i don't know I have had a stroke.
I haven't posted for a little while and thought it was about time that I did an update. It's difficult to remember all the things that were happening at this time. There were lots of appointments for various issues associated with my stroke. The one thing I hadn't heard about was an appointment about my loss of eyesight. I was told that I would hear from the orthoptist about an evaluation. I decided to phone the stroke service and ask. This is the only part of my care that fell below a high standard. Over a couple of days I left messages on the answer machine but no response. After a number of tries I managed to get hold of someone who said that someone would phone me back later that day. No one phoned. I have noticed since my stroke that I get very anxious about what people say and do. I was starting to get stressed about this as an issue. I phoned again and was told the same thing and there was still no phone call. I did have to go to the hospital for a blood test so I stopped by the office. I managed to catch my boss and mentioned that there had been no contact from the eye service. It is the only time that I have used my employment to bypass a system. I had a phone call that day and an emergency appointment the following day. The person apologised as I had slipped through the system and should have had the appointment a couple of weeks after the stroke.
