I ran the London Marathon

The marathon is only 26.2 miles and takes between 2 and 7 hours depending on your fitness and running ability.  My journey was a lot longer. 

At the Livability offices with Francesca and Ralph

My journey began on a cold and wet January evening in 2018 at the Livability head offices.  I had been asked to talk to their London Marathon runners about what services Livability provide and how they had made a difference since my stroke two years previously.  I had a great time at the event and my talk seemed to go well.  What really impressed me about the people there was their desire to make a difference and to raise money for Livability.  There was a real mix of people from those who had run many marathons to those who were new to running.  The people made an impact on me and I did feel slightly jealous that they were going to do something that I felt was out of my reach.

During the evening one of the Livability asked if I wanted to do the marathon at some point I replied that I would love to but felt it was something beyond my abilities.  Up until that point I had only ever ran a half marathon and I found that tough.  They suggested that if I was interested then to let them know. After travelling home I received some nice messages from people who had attended the event and how much I inspired them.  It was simple messages like this that made me think further about entering.

The story jumps forward a few months to early April 2018.  I received an email from Livability asking me if I was interested in registering an interest in applying for one of their charity places for the 2019 London Marathon.  I thought there is no harm in simply registering and my running was going well so it felt like an easy thing to do without having to make a commitment.  I had been discussing running the marathon with my son Ben so we both decided to register.  I didn’t expect to hear anything for some time and I also expected not to get a place after all I wasn’t the best candidate to run a marathon.  I received a response within a couple of hours saying that both Ben and I had places.  So much for having time to consider whether I could do it.  I could not really believe that they had offered me a place. 

It was a tough decision for me to make.  I am sure most people would be very quick to make the decision to accept; after all it is one of the toughest marathons to get into.  As many of you know running a marathon is not just a case of turning up and running 26.2 miles.  For me the decision was a lot tougher.  How would I get round, I would need a guide; would I be able to fit in the training given the level of fatigue I suffer post stroke combined with working 3 / 4 days per week; is it sensible for a stroke survivor to run a marathon; would I be able to raise the target of £1,875, £3,750 if Ben and I did a combined fundraising effort.  I also had to consider whether Stephanie would want me to run.  I know that she was not a massive fan of me running races as my stroke happened after a race.  Having discussed all of the issues with Stephanie and Ben we eventually agreed that I could run.  Both Ben and I responded positively to the invitation.  Ben and I were part of the Livability team that would run the 2019 London Marathon.  Even now that still feels a scary thing to say.

I had just over a year to get into a level of fitness that would enable me to run the marathon.  With all things like this there is an almost childlike level of enthusiasm in starting the training.  I was definitely motivated towards getting a great time at the marathon.  With all these things you have in mind a target time in mind.  In my registration of interest I had put down that I hoped to do the marathon in 5 hours.  The reality was that I really wanted to do it in less than 4 hours.  Looking back now that target was almost ridiculous, however I had done a half marathon in 2:03 and I was not at my greatest level of fitness so 4:00 hours appeared a reasonable target.

The next problem was trying to find someone to run with me as a guide.  Although I don’t often run with a guide I knew that I needed one for the marathon.  It wasn’t just that I needed someone to guide me round I needed someone who could keep an eye on me making sure I was cognitively capable of running.  Also with the massive number of runners it was important that I stayed safe and kept everyone around me safe.  Having a half blind person running around is a recipe for disaster!!  Sometimes things happen in life that are just meant to be and how I got a guide is one of them.  I told a very good friend, Kathy that I had got a place in the London Marathon.  This is the exact response I got a couple of hours later:

“Brilliant news. Funny I was talking about you today. My friend Kevin who is Dr ran VLM on Sunday.  He has decided to do his running course for visually impaired and I mentioned in passing that you had applied for 2018 and not got in. He then said well if he wants someone to run with him I am more than happy!! He doesn't want to do it for himself again but to help someone else!  Then I walk out of work and see your text. How very weird!!!”

Kevin and I at the Snetterton half marathon

So not only had I found myself a guide for the day he was a doctor and a cardiologist at that.  One of Stephanie’s fears was that I would over exert myself and collapse.  Having a doctor running with me was like having my own personal medical team with me on the day.  It couldn’t have been planned any better.

I am a very organised person so the next few months I began my training in earnest.  I planned a few races and even arranged with Kevin to run a few events so we could practice running together.  Having a guide runner is not something that is particularly easy to pick up so you do have to train together.  To be able to run together you have to communicate well and gain trust from each other.  I have to trust my guide to direct me round obstacles and he has to trust that I will do as he asks.  It isn’t that simple.  Kevin wasn't always able to join me on all of the runs but he arranged for one of his friends, Julian, to run with me on a 20 mile race.  

I soon realised that my hope of a sub 4 hour marathon was unachievable.  Although the training was going well I was more concerned with getting my distance up and less about increasing my pace.  A 4:30 marathon was now my target.  It was a lot more difficult to train during the autumn and winter as it was difficult to train in the evenings.  I am fortunate that I have good running friends particulalrly George and Stuart who continually supported my training efforts and accompanied me to a number of races.

During this time Ben and I were starting to fundraise, the target of £3,750 was a long way off. It hadn’t been that long since I had raised £2,800 for Livability so I was worried that people would not donate having donated so recently.  At first the sponsorship came in very slowly and it was a big worry.  I had already decided that if we fell short I would make up the shortfall.

At this point everything went downhill over the next few months with a combination of issues keeping me from training.

The most significant of these was that just after Christmas my mother fell ill and was admitted to hospital.  Unfortunately she had pancreatic cancer and died in mid-January.  This was devastating for all of my family as it happened so quickly.  I remember doing a training run shortly after she died and I was about 5 miles into the run and I just stopped and cried.  It was so tough, I managed to jog / cry the rest of the way home.  My training at this point took a massive step backwards.

I also had to cancel an important run with Kevin as Stephanie was unwell.  This also gave me additional worry and this impacted on my training.

The final problem was that three weeks before the marathon I had a blood pressure check and it was 220/110.  This was a significant problem probably brought about by a combination of things such as my mother’s death, a stressful time at work, worrying about Stephanie and worrying about the marathon.  My consultant said that I could not run the marathon unless my blood pressure significantly improved.  I was put on blood pressure medicine and told to rest. 

So in the final few months when I should have been increasing my mileage and pace I had actually reduced the mileage and had to run at a gentle jog.  Things were not looking good at all. 

With a week to go we were also £800 short of our fundraising target.  The generosity of my friends and family continues to amaze me and in the last week we raised that money so on the day of the marathon we had hit our £3,750 target.

It had taken a lot of effort, sweat and tears but I finally made it to race day.  I am sorry it has taken such a long story to get here!!

People always say what a wonderful experience the London Marathon is but nothing truly prepares you for what it is actually like. 

The day began early with a nice healthy breakfast with Stephanie at our hotel.  The hotel we stayed in was not too far from the finish line, it also had laid on a coach for their guests to get to the starting line.  Ben joined me at the hotel as he was getting a lift on the coach.  It was quite a sobering journey as all we heard were the people in front talking about the number of marathons they had done. 

Ben and I before the start

The coach dropped us off in Greenwich Park not far from the start.  We had to be at the Livability meeting point at 8:00 for a photoshoot.  It also gave us the opportunity to meet other Livability runners.  I had been in contact with a number of them over the recent months as there was a

Facebook Group for Livability runners. It was great to put names to faces.  There is a real sense of anticipation and nervousness with all my fellow runners.  It’s been a long time coming and all are running for many different reason but the prime purpose is to raise money for Livability.

The Livability marathon runners 2019

After the photoshoot we went to our starting area.  Kevin and I went directly to the start pens and to zone 5 and we were the first ones there.  Kevin wanted to make sure that there was a gap in front of us when we started so it would be easier for me.  What many people don’t realise is that there is a lot of waiting around before the start of the marathon.  We were at the start pen at 9:00 but passed the start line at 10:37.  So we were hanging around at the start on our feet for over an hour and a half.  My first mistake of the day was that I didn’t take anything to keep me warm until the start of the race.  My fleece and tracksuit were now on a lorry after having to drop them at the bag drop.  Other people had old clothes that they discarded just before the start.

Kevin and I before the start

As the time got closer stewards came to the front of the pens, they were going to walk us to closer to the start.  One issue we had was that I was put in zone 5 and Kevin for some reason had been put in zone 6 even though he was my guide.  A steward noticed that Kevin was supposed to be in the slower zone and said that he had to move to the slower pen.  Kevin asked the steward to read the word on the front of his vest.  In great big letters was the word “Guide”.  Kevin also showed him that we were joined together by a tether.  The steward realised what the situation was and said it was okay.  Everything was very light hearted and there were lots of friendly chats going on around us.  We were all in the same boat and all hoping to do roughly the same time.  I said to Kevin that I hoped to go round in 4:45 and if we went over 5 hours then something had gone wrong.  We had already planned out the pace I was going to run.  I would plan to run at 6:30 per kilometre for the first half of the race this was will within my capabilities, I had never run a half marathon slower than that.  I would then try and keep this pace up for as long as possible but gradually reduce to a 7:00 per km for the rest of the race.  This would keep me on target for a 4:45 marathon.

We were led through the zone by the stewards and then waited for what felt like an eternity until we were called onto the road where the start was.  Again there was more waiting but eventually we started moving forwards.  Eventually at 10:37 we crossed the start line along with 43,000 others all setting out on this epic journey. 

The first few miles were nice and easy, it is slightly downhill and as a result it is easy to get carried away with the adrenaline and go too fast.  Kevin was very conscious of the pace and we kept at our target pace.  After 4 Km every km was within 1 second of each other.  Everything was going well.  Kevin and I were working well together as a team, the road was busy but most people were running and litter on the road was light.  The crowds were amazing cheering you on, having your name emblazoned across your chest meant that people were constantly calling out your name.  People also saw that I had a guide runner so that meant even greater cheers and encouragement.

I first started to feel something wrong with my foot at about 3km; my right foot had pins and needles and as I progressed it started to get more uncomfortable.  I assumed that it was just restricted blood flow so I moved my foot around in my shoe trying to release any restriction.  I didn’t say anything to Kevin until about 8km.  By this time my foot was very uncomfortable and I was starting to get shooting pains through my foot.  We decided that I should slow down with the hope that the problem would solve itself.

There are a number of places on the London Marathon course that are considered iconic and as such the crowds are a lot larger.  The first of these was Cutty Sark (at 10k), the crowds were massive and they are all shouting out your name.  It really does give you a lift to hear your name being called out.  The downside of this is once you are past there you come back to earth.  The euphoria of the cheers lessened and the reality was that I still had 32km to run and my foot was getting more and more painful.  I know Kevin was concerned about my injury as he kept asking if I needed to stop for a rest.  I didn’t want to stop but we did slow down at 14km to roughly 8 minute kilometres.  My foot was still getting worse and this meant that I was not running very comfortably.  As a result I started to get cramp in my legs.  It never rains but it pours.  To set this in context in the months leading up to the marathon I had been running in excess of half marathon distance (up to 20 miles) on numerous occasions and cramp had not been a problem.  But here I was after only 8 miles struggling to keep going one step after another.

The crowd continue to support us as we went round I am sure they could tell that I was in a lot of pain so they seemed to cheer even louder.  Kevin was constantly talking to me and keeping my spirits up.  One of the difficulties of being a visually impaired runner is that you and your guide are two people wide and getting through gaps is therefore twice as hard.  Kevin was great at moving people out of the way with a friendly word.  He also had to constantly tell me that there was an obstacle such as water bottles, odd bits of clothing and other litter on the ground.  This may not seem a bit problem but as I cannot see low down easily I rely on looking ahead and noticing these things, however as there were so many people I could not see far enough ahead. I was relying on Kevin telling me that there was an obstacle.  Kevin also had to plot a course through the crowds trying to find less populated parts of the route.  I am sure our route looked like a drunken pub crawl around London as we were going from one side to the other rarely seeing the blue racing line.  Whilst this meant we did quite a lot of extra distance it was important to keep us both safe.

There were times that I could have easily thrown in the towel and just said enough is enough.  At about 10 miles I was getting to the point where I could have given up but something happened that made a massive difference.  They estimate that there 750,000 spectators for the London Marathon so the chances of seeing someone you know by accident is remote.  I was struggling along and I heard my name being called out and for some reason I looked round.  In the crowd was someone I met at the Livability reception when I started this long journey that January evening in 2018.  Fortunately there were no barriers at the side of the road so I stopped and got a great big hug and some words of encouragement from her and her partner Ralph.  I don’t think they know how much those few words of encouragement meant.  I remember what I said at that reception that there would be bad times but that it was important to think about the challenges faced by Livability’s clients every day and to keep going.  Francesca and Ralph if you ever read this thank you so much you do not know what a difference seeing you made that day.

I was still hobbling along with the pain in my right leg getting worse and the cramp was in both legs and I still had 16 miles to go.  I don’t really remember the next few miles but eventually we were coming to Tower bridge.  This is probably the most iconic viewing point in the whole race.  The bridge was packed with spectators on both sides.  It was here that one of my favourite memories of the day happened.  I was clearly struggling and it was obvious to the spectators that I was.  I think this together with being a guided runner made people chant my name.  As I ran over the bridge the chant was picked up by the next spectator so the whole way across the bridge I was swept along with the chant of “David, David, David….”.  Absolutely unforgettable.  Kevin had to tell me to slow down as I had unconsciously picked up the pace.

Tower Bridge is just before half way and the finish seemed a long way off.  It was at about half way that Kevin decided we need to stop and try and sort things out.  I sat down at the side of the road and once Kevin had reassured the numerous St Johns ambulance people that I was okay, we assessed what the situation was.  First of all he took my shoe off and examined my foot.  He said it wasn’t caused by lack of blood flow so loosening my shoes would not help.  He also stretched out my legs to help relieve the cramp which was incredibly painful.  I remember Kevin telling me that it would be okay to stop and that it would not lessen my achievement.  He told me afterwards that I said in the sternest voice he had heard me use “I am never giving up”.  The one thing people would say about me is that I am not a quitter; once I start something I will not stop until it’s complete.  Kevin then gave me the option of walking the rest of the way.  He said I will still finish before the roads reopen.  Again I said that I wanted to continue to run.  I say run but it was more of a tortured hobble but it was running.

Kevin and I arriving at the Livability cheer point

The good news was that every step was taking me closer to the finish.  My next target was 16 miles where the Livability cheer point was.  It was also where Stephanie, Bethany (my daughter), Samuel (nephew) and Kathy (the friend who had introduced me to Kevin) were waiting.  The time between halfway and 16 miles was the toughest part of the race, I don’t honestly know how I got there but I know that without Kevin I would have stopped, his company and encouragement was immense.  I kept thinking that the cheer point would be soon but it took ages to arrive.  When we at last saw the cheer point I was so relieved.  To see all the Livability team plus my family and friends all cheering me was so emotional.  I stopped just to give everyone a hug and just to be with everyone was a real lift.  I know that people were worried as I had taken a lot longer to get there than they expected.  They knew that something had gone wrong.  Stephanie told me that Livability had some tickets in the grandstand on the Mall and that they would be there to cheer me in.  The time to continue came round too fast and we were off again.

I had now done 16 miles and only had 10 miles to go.  I think it was a combination of the lift from seeing everyone plus 10 miles was a distance I used to run regularly in my training that meant I felt I could complete the race. It wasn’t getting easier as the cramp was terrible and the pain shooting up my right leg was as bad as ever.  I just felt I could overcome it.

Once you come out of Docklands and onto the embankment you can see the Houses of Parliament in the distance.  That was a massive target to aim for and the finish line was not far from there.  The crowds along the route were amazing and they really keep you running even though you don’t want to. 

Running down the Mall

Before too long we were at the Houses of Parliament and there was only a short distance to go until the finish.  When you turn the corner, run past Buckingham Palace and get on to the Mall you know you have done it and I felt a massive feeling of euphoria.  As you run up the Mall you wave to the crowd who are cheering like mad.  I saw Stephanie and Bethany in the crowd and that put a massive smile on my face.  As I was running up to the finish line the emotion of the day took over and I remember crying.  Never underestimate how important achieving a massive goal is to you.  I could not believe it I had run the London Marathon.  When I crossed the line the first thing I did was give my hero Kevin a big hug.  The finish line video shows this moment and it brings a tear to my eye every time I see it.  I crossed the finish line in 5:43 so much for my target of 4:45!!! 

Kevin and I just after finishing

Ben and I at the Livability reception

Meeting up with everyone a short distance from the finish was lovely, there were hugs all round.  I had achieved something that not many others do.  There couldn’t have been many other diabetic, partially sighted, cognitively challenged stroke survivors running the marathon.   After running for so long I could hardly stand up never mind walk.  Somehow we managed to get to the Livability marathon reception and had some well earned food and drink.  I missed lots of the people as they had already been and gone.  The welcome there was as warm as it would have been if I had finished in 2 hours.  It was great to catch up with the Livability team and to share marathon stories with them and the other runners that were there. 

Even now writing this a few months afterwards I still cant believe I did it.  Its difficult to express what it feels like to do the marathon.   I am really proud that Ben and I raised almost £5000 for Livability.  I can never repay them for how much they helped me but this has gone a small way towards that thanks.  My injury turned out to be nerve damage in my right foot.  It is almost five months after the marathon and still have no feeling in two toes and it is still uncomfortable to run.  Was it worth it - absolutely and I am entered into the ballot for next year so you never know I may be having further blog entries about running a marathon. 

I have always said that I am nothing special all I have tried to do is live my life the best I could given the circumstances that life has put in front of me.  I do know that what I have done is unusual and if by doing it helps others then maybe it is more than just getting on with life.  

To finish I will finish with quoting from a card that Kevin sent me after the marathon.  I had sent him a small gift and a thank you card.  To me, he is a hero.  This is what his card said:  "The truth, however, is that you have no need to thank me because by running with you I received far more than I had to give.  Every time we ran together, I was witness to the bravery and dedication required to fight back from a serious illness.  To be in a team with you was truly inspirational"

  

   

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?