I survived a stroke - What’s your super power

I did a talk to the Suffolk Stroke Pathway Professional Network seminar.  It was quite a challenge for me but it seemed to go well.  It was suggested that I included my talk on my blog.  This is not quite what I said as at times I did go off script.

I want to thank you for inviting me to talk to you today.  I have been asked to talk about the patient and carer experience of the stroke pathway.  What worked well, what was less successful and how my life has changed for better or worse by experience. To be able to do this I need to tell you about my stroke and how it happened.

 

I like this slide and its worth remembering that all stroke survivors have gone through a medical event that is potentially life threatening and the leading cause of disability in the UK.  They were strong enough or fortunate enough to survive.  I guess your super powers are the ability to treat and help these amazing people to recover and adapt to their new life.  I don’t consider my self a super hero all I am is an ordinary middle aged man trying the best to live the best way I can despite the things that have happened to me.  Yes I have the super power of surviving a stroke and I am certain I will continue to do this for as long as possible.

I am sure that you are all aware of some of the statistics about stroke but I think its worth sharing these ones with you:

· There are more than 100,000 strokes in the UK each year. That is around one stroke every five minutes.

· There are over 1.2 million stroke survivors in the UK.

· Stroke is the fourth biggest killer in the in the UK, approx 38,000 deaths in 2016

· Almost two thirds of stroke survivors leave hospital with a disability

· People of working age are two to three times more likely to be unemployed eight years after their stroke.

· Stroke death rates in the UK fell by almost half in the period from 1990 to 2010

· It is estimated that 60% of stroke survivors have vision problems immediately after their stroke.

I am not medically trained at all so some of what I say may not be medically accurate but it is my view of my world and my stroke.  I am not a stroke expert but I am an expert on my stroke.  I was once told “Once you have seen one stroke, you have seen one stroke”. Everyone’s stroke is unique to them, there may be similarities between strokes but everyone’s experience of it is different and the job of the stroke system is to make the approach as inclusive as possible.  You cannot always shoehorn a person into a pathway how ever hard you try, each persons stroke journey has to be unique to them to enable them to flourish in their new self.

I have reflected quite a lot on the cause of my stroke and as yet I have been not been given a definitive reason for my stroke.  I have my own theory of what the cause was.  In the months leading up to my stroke I was under a lot of stress at work with a lot of deadlines and an almost insurmountable amount of work.  I was averaging in excess of 60 hours at work per week and the week before my stroke I had worked over 70 hours and all of this was under great stress.  I knew that I was starting to struggle but I had been brought up to believe that you have to push yourself hard in order to achieve.  I don’t blame my job for my stroke I loved my job and I thrived under the pressure but I believe the stress caused me high blood pressure which resulted in a clot forming somewhere.  I am also a keen runner and in the weeks leading up to the stroke I had little episodes where I had the vision problems after a run.  I thought that they were migraines.  As a child I had migraines after exercise so I wasn’t worried.  After probably 10 of these episodes I thought I should start recording when they had happened so I recorded all that I had been eating etc.  I had recorded 15 further episodes before my stroke.  If I was to take one lesson from this is that sometimes when things aren't right you need to get medical help. I subsequently found that these episodes were probably little bits of the clot breaking off.

I had my stroke in April 2016 following completing a 10k race in Ickworth Park in Suffolk.  As I was approaching the line after a tough cross country I realised that I might not get under my target time of an hour.  So I did what most runners would do and increased my pace and sprinted up the final hill and finished in 59:57 just inside my target.  

This is me finishing the race, as you can see from the muddy legs it was a tough cross country.  This is a tough photo for me to look at, it was the last photo taken before I had a stroke.

I knew I had pushed very hard and was not feeling too good but I never thought anything was wrong.  I rested for a few minutes and then drove home.    Not long afterwards I was standing in my kitchen when I lost all of my vision, everything was out of focus and I felt very odd.  After a couple of minutes my vision cleared and I was left with what I thought was visual problems associated with a migraine.  As I mentioned earlier I have suffered with migraines in the past so I wasn’t that worried.  In fact I didn’t do anything about it for several hours as I thought it would just get better.  My wife Stephanie is quite a worrier so I didn’t mention it to her as I knew she would be worried.  I think on this occasion she would have had a right to worry.  I also think that I was probably not thinking properly as it is not normal to lose your sight even for a few minutes. I never believed that it was a stroke after all I had none of the symptoms the adverts say.  My face wasn’t drooping, I could move both my arms properly and my speech was okay.  No one ever mentioned that vision problems occur in over half of stroke survivors.  I eventually went to the Out of Hours Doctor and after a few questions and checks immediately referred me to A&E, where I jumped to the front of the queue.

I found the experience in A&E very quick and efficient with lots of questions and vision tests in the end I had a CT scan.  This didn’t indicate any problems that required admission so I was sent home for the night with an appointment for an urgent MRI scan in the morning.  After a pretty bad night of worry I went to the hospital and was seen on a ward.  I was asked lots of questions and had to the same tests again and again by different people.  One of the things I was asked to do was remember an address.  I was probably asked this half a dozen times and it was always the same address so in the end I could remember it.  I think if I had been asked my home address I would have said the address I was asked to remember instead. Whilst the test is probably important, for me it wasn’t a great test.  If you ask me to remember something I will concentrate on remembering it and I would generally get it right.  If they had asked me what I had for lunch the previous day I would have struggled.  After sometime I had my MRI scan and again I couldn’t fault the service and care I received.  It was a very noisy experience and took a lot longer than I thought it would.

I eventually went to the TIA Clinic area on the stroke ward.  There was a lot of hanging around and it is an extremely worrying time.  At one point (probably while in A&E) I was told that possible causes of my problems were a brain tumour or a stroke.  With thoughts like that going through your head you cannot help thinking about the future and whether you are going to die soon.  There is probably nothing you can do to change that as you are in limbo waiting for a diagnosis.  Eventually the stroke consultant came to see me and told me that I had a stroke in two places.  To be exact I had damage to the right occipital lobe and the right thalamus.  When I was given the stroke diagnosis I remember being relieved.  It seems a strange emotion to have but until that moment I thought I could have had a brain tumour.  A stroke definitely seemed the lesser of two evils.  I don’t really remember much about the rest of that day all I remember was that I was told that someone from the Early Supported Discharge team would come and see me.  I also had a whole lot of new drugs to take.

One thing I have been told is that stroke doesn’t just happen to you, it happens to the whole family.  The emotional side of stroke is massive and affects everyone.  I remember my daughter being very upset about it and it was very hard on my wife too.  There are lots of thoughts about why did this happen.  After all, I am young, non smoker with a good diet and exercise regularly. Stroke doesn't happen to young people it only affects older or unhealthy people.  With your knowledge you know that this is not always the case.  Stroke can be indiscriminate in who it affects and how much they are affected.  What is important is how a stroke survivor is treated post the initial diagnosis.  It is a long and hard journey that few appreciate that at the outset.

This slide is interesting as it does explain very well the different perceptions that people have.  The person looking on cannot understand what its like to have had a stroke and its difficult for the stroke survivor to adequately explain what it is like.  I can explain the physical issues but not what it is like.

The problems I have are:

· I have permanently lost approximately 40% of my vision the technical term is Homonymous hemianopia.  I actually consider this the least of my problems.  Its not going to get better so I just have to deal with it. I am no longer allowed to drive and this has caused a massive loss of independence.  I also bump into and people and things a lot.  I get used to apologising to people when generally they are the ones who are so focussed on their phones that they don’t notice a partially sighted person with a white stick in front of them.

· Memory problems – there are parts of my life that I have totally forgotten and it is only when someone talks about it do I realise that I have no memory of it at all.  I don’t consider this to be a major problem as I don’t know what I have forgotten.  The short term memory is more problematic as it can cause real difficulties.  I will regularly forget to take my drugs.  I will forget things regularly and people tend to tell me that they are forgetful all the time and not to worry.  The difference for me is that I am trying very hard to remember things but still I forget.  I know that people are being kind but they don’t understand the frustration that I feel.  I used to have an excellent short term memory. This cartoon sums it up perfectly. 

·  I do have problems with names.  I do try to make associations to help me remember names but it is not totally fool proof.  For example I have a colleague at work called Louise and for some reason I just couldn’t remember her name. So a friend suggested an association.  There is pop singer called Louise who was married to the footballer Jamie Rednapp. So all I needed to do was remember football and I would be fine.  Unfortunately the next time I saw her I remembered the association of football but unfortunately I could only think of David Beckham and his wife so I kept calling her Victoria.

· 

· Cognitive problems – I really struggle to think deeply any more.  The actual diagnosis of this is a pronounced dysexecutive syndrome.  This problem has meant that I can no longer do the job I was employed to do and therefore I no longer do this job any more.  A further consequence of this is that I no longer read.  I find that following a story is hard to do and I cannot understand the plots particularly if there are multiple story lines.  I should probably start watching reality TV but things aren't quite that bad yet.  I used to play chess at a reasonable standard and I can no longer do this any more.  I will lose on beginner level on my computer.

· Mild aphasia – This is caused as a result of my cognitive problems the technical name is Cognitive Communication Disorder.  There are days when I have great difficulty talking and at times I think I should have auditioned for the part of Yoda in Star Wars.  On a bad day I will get words mixed up and it can be funny for example I will talk about a par cark and I recently said the music I was listening to was meatwood flac.

· Neurofatigue – I am sure that many of you know this analogy but it is worth repeating. If you imagine a non-brain injured person’s brain as a battery and in a normal day that battery would start to struggle after 10 hours of work.  For a brain injured person the battery runs low after about 3 hours. The fatigue can be debilitating and the impact for me can be significant.  After a days work I am totally shattered and will quite often sleep in the evening.  One unusual aspect for me is that when the fatigue is really bad I begin to talk in a made up language and will not stop talking.  Not only that it happens when I go to sleep as well and then I will even sing in this made up language.

· Depression is something that is very common in stroke survivors particularly in younger survivors.  I struggled for quite a time with this and although there has been a lot of improvement in society’s acceptance of mental health issues it is still tough to admit that you have a problem.

Apart from that I am in great health.

After leaving hospital I was under the care of the Early Supported Discharge Team for the next six weeks  I don’t remember too much about this although I do know I saw Occupational Therapy, Speech Therapy and a Clinical Neuropsychologist. To be honest the majority of this was about finding out what I could not do rather than how I would get better.  One of the things that was really frustrating was there seemed to be no account taken of my pre stoke abilities.  I was asked to do a number of arithmetic teast and was told I had done really well and no one had got them all right before.  What was not taken into account was that I have been an accountant for 34 years and that I had a degree in maths.  What would have been instantaneous previously was a real struggle and it took longer than it would have done previuosly.  As I had got it right that was considered to be good but to me it was terrible.  Occupational therapy was good though as it helped with some basic skills that helped me live my daily life.  The best outcome from this period of time was that I was referred to Icanho although it took quite a long time for me to get treated there.

At the end of May I was no longer with the Early Supported Discharge Team and I was accepted to the Icanho programme at the end of September.  So for a period of four months I was in limbo not knowing what was going to happen.  I didn’t know that I would be accepted by Icanho, I knew that I couldn’t work and I honestly felt lost.  I am referred to as a younger stroke survivor, it is nice to be called young at something.  I think the majority of stroke care is focussed around older survivors as I guess they make up the larger proportion.  However the number of younger people having strokes has increased and I don’t think that this has been taken into account enough in the planning of healthcare.  Younger survivors have a totally different set of concerns and needs than older survivors.  I had lots of concerns about wanting to get back to work and getting back to other interests of mine such as running.  I was given lots of information and pamphlets by the Early Supported Discharge team.  Any pictures in them were of elderly people and it made me feel that I would have plenty to do in 20 years time but for now there was nothing.  There were groups for younger survivors but they were based in larger cities and no longer being able to drive meant I could not get there.

If I hadn’t been accepted by Icanho I don’t know where I would be now.  I don’t think I would be back at work and I certainly would not have achieved some of the things I have achieved.  I think that this is the biggest challenge to treating younger survivor.  There is a real risk of them falling into a void occupied by those who want to progress but are unable to access services that will enable them to make a valuable contribution to society.

In July 2016 I had an appointment with my consultant and I was having a bad day cognitively and was struggling to make myself understood.  My day then got a lot worse as he made the decision to admit me to the stroke ward.  There was concern about another stroke although fortunately this had not happened.  I think that he had not seen me on a bad cognitive day before.  I spent four days on the ward (over a weekend) and it was not a pleasant experience.  The stroke ward is a hard place to be on even though all of the staff are absolutely wonderful.  I was the youngest on the ward by at least 20 years and seeing the rest of the patients was hard as they were so much worse off that I was.  Even though I did not like being woken up every four hours for observation I cannot fault the care that I received.  I was glad to be discharged and get back to the peace and quiet of my own home.  The stroke ward is a very noisy place.

One of the things I will always be grateful for is that I was referred to Icanho.  It is an amazing place and it is staffed by some wonderful people.  I was there on an outpatient basis for about six months.  I would go up to 4 times in a week although generally it was less than this.  After an initial assessment I was offered 4 different areas for treatment.

Physiotherapy – although as you can see I am mobile and far more so than many other stroke survivors, I have a minor balance issue which hasn’t really affected me unless I am really tired after a run.  I had a number of sessions in the gym doing exercises that helped me relearn balance.  

Speech and Language therapy - I have mild aphasia caused by my cognitive problems and this is probably the main thing that people will notice is that my speaking is sometimes confused and at worst is unintelligible.  Speech and language therapy consisted of lots of word games and word associations.  It would seem to most people looking on that the games were very easy.  I will give you an example of one game.  I was asked to define the word “yesterday” all I could do was say that it was not today and then pointed behind me.  I understood the word but could not explain it.  The key thing I learned was that it is okay not to use the perfect word every time.  If you are talking to me and I fall silent the chances are I am trying to find a perfect word.  I will eventually find a word that will do.  

Occupational Therapy- the prime focus of being at Icanho was to get me in a position to return to work in some form.  We did lots of work about developing strategies for dealing with the tasks that would face me.  Before my stroke I would be able to hold in my mind multiple tasks and jobs.  Now I have to break down tasks into lists of little actions that build up to a single task.  I am now back at work although I am unable to do my original job.  The important thing is that without Icanho I would probably still sitting at home without a job.  Stroke recovery is a long journey and you may never get back to where you were but the important thing is to believe you can get there and never stop trying.

Counselling - depression and emotional problems occurs in about a third of all stroke survivors and as I mentioned earlier the percentage is a lot higher in younger survivors.  I have a wonderful family and I have always had tremendous support from my wife and children, but stroke is a lonely place.  As a survivor you spend a lot of time in your own head churning things over. What if I hadn't run so fast, what if I had gone to the hospital earlier… why did I bother trying to keep fit? The list goes on and on.  It is easier to hold these feelings back and not talk about them.  It became apparent to me and others that I was struggling with the emotional impact that the stroke had.  Having had a life threatening illness is hard but then when you are left with dealing with disabilities that it caused was proving too much.  I had some really dark days where I felt what ever way I turned there was another problem.  Icanho offered me counselling and in terms of all of their services it this one that I benefited from the most.  One of the key thing I learned was that the stroke wasn’t my fault.  I had been blaming myself ever since the stroke and appreciating that it wasn’t my fault was a great revelation to me. I can honestly say that this is one area where I believe no longer impacts on my life.

One of the reasons I was asked to talk to you is that even after all I have been through I have some positive outcomes.  The first thing I want to mention is that I am still a runner.  People think that I am crazy to still run; after all I had a stroke after a run.  To me running is about power and control.  I have a very personal relationship with my stroke, it tried to kill me after a run.  So to exercise control and power over my stroke I run and every time I do run I can say to my stroke you haven't beaten me you will not win.  I am still winning.  In 2017 I ran 1000 miles, I did a fund raising run at the equivalent race a year after my stroke for Icanho and raised about £2500.  I even managed to finish it a minute quicker than the run the previous year.

 

I was awarded 3 county sports awards and I have written a blog about my experiences.  I absolutely believe that without Icanho I could have done none of this.  I have also had confirmed that I have a place in next years London Marathon and I will be fund-raising for Icanho once again.
Click here to donate on my justgiving page

  

I have also returned to work initially on a phased basis but eventually I was working full time.  I am not able to do my previous job I don’t have the brain power to be able to do it.  I have been redeployed into a different role although this was not something I particularly wanted to do, it was definitely the right thing.  I am under far less stress and the work load is manageable.  But even with these changes I have struggled so as a consequence I have reduced the hours I work.  I now only work four days a week.  Although I know I will never be able to return to my old job I consider that this has been a massive success for me.  At one point after my stroke I never believed that I would be able to return to work in any form.

For a person who has aphasia and cognitive problems public speaking is not normally a recommended course of action.  I have spoke at a reception for London Marathon runners giving them a motivational speech and I am standing here talking to you today.  It is something that is a real challenge and I have been working on this for a number of weeks and trying to commit as much of it to memory as possible.  When I was asked to do this talk I asked how long does it need to be.  I was told it should be about 50 minutes including questions.  My thought process was I hope that they have an awful lot of questions.

With any illness it is the character of the person that is fundamentally important in determining their recovery.  The one thing I have never lacked is determination.  For others they need to find the things that motivate them.  Its this motivation that will get them in the right mind set for recovery. I have on a kitchen cupboard a load of post it notes

They are lots of quotes that I have found helpful in getting focus in my life.  The majority of them are about determination and continuing to fight.  It might not be everyone's cup of tea but for me if I am struggling with something I look at the post it notes and there will be one that helps me carry on

So to help people recover you have to find the things that motivate them, for me its the challenge of running.  For others it could be reading a book; doing a crossword; walking to the end of the road or even getting out of a chair unaided.  I refuse to believe that there is no hope in a persons recovery they just have to find what sparks them to make the necessary small steps to get them to their goal.  Part of your role is to give them the tools to make that possible.

So far all I have talked about my experiences but as equally important is the impact a stroke has on carers and the wider family.  As I said earlier I am fortunate that I have a very supportive family, but the stroke has a profound effect on all aspects of a persons life.  People might say that I don’t have a carer as I am fully mobile but I would not have progressed without the help of my family.  My wife has had to make sacrifices in her life to make sure that I have the best chances of recovery.  In some ways its like having another baby in the house.  She has to consider the choices we have and make the best decision.  She has to consider far more about what I am doing and whether it is a sensible thing to do.  Sometimes she has to tell me not to run if she doesn't think I am able to run safely.  I would want to run but she will tell me that I am not allowed as I might be confused.  I have in the past run in front of a car as I was not thinking properly.  She also has to put up with my grumpy side.  As a survivor you want to achieve but sometimes you do get angry and frustrated and it is your loved ones that bear the brunt of these frustrations.

The only support that my wife actually received was at Icanho and was offered counselling and sessions with a social worker.  I have no idea what was discussed but I know that she thought they were worth taking part.  This is one area from my experience where I feel there should be greater focus but is generally overlooked as carer support is considered secondary to the care of the survivor.

Awareness of stroke and its symptoms is improving but there is still a lack of focus on the fact it can impact young people as well. I also think that the acronym FAST is great but this may be about recognising a stroke in others. For me it didn’t work a better acronym would be BE FAST with the B standing for Balance and the E standing for Eyesight. I cannot know whether this would have made a difference for me but I think if I had of known then I might have done something sooner.

In concluding I want to emphasise that since my stroke I have done some amazing things that I would never have done before my stroke.  Am I a better person since my stroke? The answer is that I am a different person.  I would do anything to have not had a stroke it is single most terrifying life-changing thing that has ever happened to me; there are lots of things I miss; there are things I can no longer do.  The important message for me is that the stroke should not define me.  I never refer to myself as a victim, I am a survivor.

As I said earlier I have a very personal relationship with my stroke and this is what it's like. The stroke whispers in my ear that I will not withstand the storm.  Everyday I whisper into my strokes ear "today I am the storm".

If there is one thing I would like you take away from my talk is that when you are talking to stroke survivors is that you take a few moments and think about all they have been through and what truly amazing people they are.  They have used their super powers and it is now time for you to use yours.  I hope you have enjoyed what I have said and I hope that you may have learned something too.

Thank you, do you have any questions?