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Friday, 25 May 2018
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
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?
Saturday, 20 January 2018
It's not often that I write a blog post so quickly after something that has happened but this week I did something that I never thought I would do again. I spoke in public!! Before my stroke I have spoken in public on quite a few occasions but having had the stoke I never thought I would have the confidence to do it. Also I never know what sort of day I will have with my aphasia. Sometimes I am a bumbling idiot but other days I am quite fluent. I never know which me will turn up on any particular day.
I had an email from Livability (this is the charity that runs Icanho - my rehabilitation centre) and they asked if I would like to talk at a reception for their London Marathon runners. It was a tough decision for me. I really wanted to do it but I had a real fear of making a fool of myself. For people who suffer with aphasia this is a constant feeling we face every day. You always try to speak the best you can but sometimes it just doesn't work. For me in my mind I generally know what I want to say but just cannot work out how to get the thoughts converted into words. I also want to find the perfect word but sometimes I just can't find it. You cannot understand how frustrating I find this. The other thing that affects my aphasia is stress . When I am under pressure the words just start to fail me and the more it happens the worse it gets. So standing up and talking to strangers is something I would find stressful. In some ways it would have been easy to say that I wouldn’t do it. After all if I didn’t do it I could have a lazy Thursday evening at home. On the face of it it is an easy choice to make.
One of the many things that my stroke has taught me is that sometimes you have to push yourself beyond where you thought possible. So even though it would have been easy to turn this opportunity down it was something where I could tell my stroke once again that it hasn’t beaten me. The main positive of doing the talk was that I could tell people about the wonderful things that Livability and Icanho do. So I decided that I would do it although I wasn’t sure how I would get there as I didn’t want Stephanie to take a day off work. I was not really thinking straight as the event was on a Thursday and this was her day off. I emailed Livability and let them know that I would do it. I immediately thought that I should retract as the implication of what I had agreed to do dawned on me!!
I thought quite a lot about what I would say and came up with a plan of my speech. I quickly decided that I would write out exactly what I would say and try and remember as much as possible. With a script at least if I stumbled with my speaking I could read what was written. I was even prepared to read what I had written word for word. If my aphasia was bad then I would not have had an option but to read it all. That would still be tough to do if it was a really bad day.
Writing what I wanted to say was tougher than I thought. When I started to write it I was having a bad cognitive day and it was a real struggle. I persevered and eventually came up with a draft. It took a few more more attempts to get a version that I was comfortable with. Now came the difficult bit to try and a commit as much to memory as possible. To a non brain injured person this would be a challenge but to a stroke survivor it was like climbing everest. It was a massive problem for me as I did want to do well but couldn’t really hope to remember the majority of the speech. I practised and practised. I am sure Stephanie was fed up with me speaking the speech out loud but this was the only way I stood a chance of remembering it.
On the morning of the talk I woke up wondering what sort of cognitive day I would have. It wasn’t perfect but it wasn’t terrible. I practised in the morning before I went to work and it was probably one of the worst attempts and I had to refer to the script constantly. It was probably nerves kicking in I was so nervous!!
We left for London at about 3 o’clock; it was probably a little early but there had been problems with the roads earlier in the day. As it turned out we had no problems at all, we arrived at the Livability offices an hour early!!! We were welcomed by Fabian who had been emailing me and he was very welcoming and put me at ease. I was hoping to have another run through of my speech but I didn’t get the opportunity. We were then introduced to Lisa who was the compere for the evening. Again we were made to feel very welcome. We also met the other people who were taking part, both of whom were running the marathon.
It was soon 6:30 the time had flown past and I was feeling nervous as we went into the area where the reception was taking place. The room had an amazing view right across to the docklands skyscrapers. It was a great venue and was well laid out. I got the opportunity to talk to quite a few people who worked at Livability and some of the runners. There were probably over 30 people there so it wasn’t too bad.
The evening started with Lisa telling everyone about the work that Livability do. It was great to hear about all of the things that they were doing that was helping a wide range of people. Lisa also told everyone about her experience running the London Marathon a few years previously. She spoke really well and without notes; how I wished she had a script. I didn’t want to be the only person to read out what they said.
There was then a speaker (I think his name was Simon, but I am not really sure) who spoke about training for a marathon and his experience of running the marathon the previous year. Once again he spoke without a script, it would mean that I would be the only one reading from a script. The pressure was mounting and I started to feel nervous.
He finished talking and so it was my turn to talk. I stood up and took a deep breath and began. There are some times in life where you find some inner strength, I don’t know where it comes from but it just happens. Fortunately it happened to me there and then. I spoke and I wasn’t struggling with words much (only a few times). I had my script but I didn’t rely on it. I think the practising I had done paid off. I did refer to it on a few occasions but generally it was only there for a few anchor points when I needed to be sure of the next section. I went off script quite a lot but it was not uncontrolled; it just flowed out of me. I was not nervous and I was looking at the audience and they seemed to be hanging on to my every word. It felt so good, much better than I thought possible. I had timed my speech and it should have taken 10 minutes, it went so well that I was probably talking for about 18 minutes and it wasn’t because I was struggling at all; I was flying and soaring. People laughed at the right places and really seemed to enjoy it. When I finished everyone clapped - I had done it, I had spoken in public. I even answered a few questions from the audience. I found that quite easy as I think I was flying high on adrenaline.
|Me with Ralph and Francesca at the Livability London Marathon reception|
After I had finished I felt a great wave of relief. There was then time for me to chat with a few of the amazing runners and encourage them. I was surprised at how much people said they enjoyed it and they found it inspirational. I have always said that I am not inspirational and haven't set out to be. All I am is a person who has a bad thing happen and all I do is I deal with it in the best way I can. If it serves as inspiration to others then that is a happy consequence.
Having spent the evening with some wonderful runners I found it inspiring. These people from all walks of life will train for months, they will make massive sacrifices to do their training and they will then punish their bodies by running over 26 miles for charity. As I said all I have done is deal with my stroke but these people are the inspirational ones they will do this race and between them they will raise over £250,000 for Livabilty. This is truly inspirational. To all of you I want to say thank you on behalf of all of the people who this money will benefit you are absolutely amazing.
If any of you running the London Marathon want to get in contact. I will promise to encourage you as best as I can. My twitter name is @rowellswales so tweet me. You can also email me on firstname.lastname@example.org
I will finish this blog post with the final quote from my speech. “Run when you can, walk if you must, crawl if you have to, just never give up”. To all the runners in the London Marathon I wish you every success in your training and for the race itself. For fellow stroke survivors I hope that this blog post will help you achieve your marathon whatever that might be.
Saturday, 25 November 2017
You go through life without any real idea of the impact that you leave as you make your way in the world. I have said on a number of occasions that I am nothing special; I will never be remembered as a famous celebrity, an amazing businessman, a great writer or a top class sportsman. All I am is an ordinary person, husband and father. The only thing that distinguishes me from most of the people I meet is that I had a stroke and they haven't. Whilst this is not unique, there are many stroke survivors in this country, it is the thing that has had the single biggest impact on my life. Since my stroke I have tried to be the best person I could be. I haven't let the stroke defeat me and all I am trying to do is live the best life that I could possibly live.
In my life I have never won much other than the odd pub quiz and the occasional game of football. So to win an award was something I never really considered. The first award was at the West Suffolk Sports Awards. I was nominated for the Triumph over Adversity Award by my wife. I didn't really expect much to come of it as like I said I am nothing special. It was a great surprise when I received an email to say that I was shortlisted for the award and was invited to the award ceremony at St Edmundsbury Cathedral. They asked me if i would like to invite anyone to attend. The obvious choice was my wife and as I knew my children wouldn't be able to attend the only other people I wanted to share the evening were two of my therapists from Icanho. It's almost impossible to thank everyone from Icanho enough. Yes I had raised £2,500 for them but sharing the awards evening was something else I could do to say how much I appreciated their help.
A couple of weeks before the ceremony there was another email explaining that the nominees for all of the awards were entered into the Peoples Choice award. This was awarded on the basis of a public vote on Facebook. Votes opened on Friday morning and would run until Sunday at midnight.
When I got the email on the Friday evening I looked at the vote and I had received a few votes but there were people who had over 70 votes. I thought that it wouldn't hurt to put a post on my Facebook page and tweet about it. Although not expecting much I checked how the voting was going on Saturday afternoon. I was quite shocked to see that i had received over 100 votes and that I was just in the lead. It was great to see who had voted and many people were my friends but there were just as many who I didn't know. I was amazed that so many people had voted for me. By Sunday afternoon the votes had slowly grown and I was still in the lead but it was getting closer. I took the opportunity to re-post to Facebook. In the end by midnight on Sunday night I was 20 votes in front. I had won the Peoples Champion award. Winning an award that was voted for by the general public was amazing.
|The Triumph Over Adversity Award|
A few weeks later it was the West Suffolk Sports Awards and there was a gathering of the great and the good of the West Suffolk sporting scene. The four of us enjoyed the hospitality at the cathedral. We were on a great table with an amazing triathlete and a coach both of whom won their respective categories. The first award that I was nominated for was the Triumph Over Adversity award. I didn't really expect to win; I knew one of the other nominees and really thought what he had been through with cancer and his contribution to the local athletics would mean he would easily win. It was a real shock when my name was announced as the winner. My heart was almost beating out of my chest, it was a great feeling. I looked round the table and everyone on the table was smiling, cheering and clapping. It was a special moment hearing the audience clapping and cheering as I went up to collect the award. I collected the award and was congratulated by the award presenter and had my photo taken. I returned to my seat and on the way back a person got up from a table and came over to shake my hand. It was all very surreal.
|The Peoples Champion Award|
A few awards later it was the Peoples Champion award, although I knew that I had already won the award it was still a great feeling going up to collect it. The rest of the evening went past quickly and at the end of the evening I had my photo taken with Sally Gunnell. Sally is one of my running heroes and hearing her talk earlier in the evening made me appreciate how much top athletes sacrifice to get to the top of their sport, truly amazing.
I have been very privileged to be involved with Bury St Edmunds Junior parkrun. I have always thought that if you take part in an event that is run by volunteers you should be a volunteer on a regular basis. I have been running at the main parkrun for a couple of years and used to volunteer on occasions. However, since my stroke I have had to rely on others to drive me to parkrun so I don't like to make people hang round after they have finished. For that reason I decided that I would volunteer at the junior parkrun which is only a short walk from my home. I have loved being part of the team there and have made some good friends. They are special group of people who like me think it is important to give back to the community; without people like this the community would not be the same. The two leaders of the parkrun Steve and Hannah give a lot to the event and their passion for the event has made it such a great success. You are probably wondering why I have made this diversion away from the topic. The event was chosen to be put forward for a Peoples Choice Project award at the Suffolk Sports Awards. This was open to a public vote across the whole of Suffolk. For me it was a no brainer (I'm allowed to say that as part of my brain is missing!!) but it still had to be voted for and I was totally delighted when it won the award. There were cameras at a parkrun to record a showcase about the event, this was to be shown at the awards.
A little while after the recording I got an email from Steve asking if Stephanie and me to join the rest of the junior parkrun team. I was surprised to be asked as there are so many great volunteers who take part regularly. It was great to be asked to share in an evening where another award was to be given. I had no hesitation in accepting the invite.
We now have to jump forwards in time to the day of the awards. I woke up and I was so fuzzy that i could not talk properly, it was one of my worst speaking days since my stroke. Although disappointed I felt I had no choice but to cry off the awards ceremony. I think Stephanie was relieved as it was quite a journey to the ceremony and she would have to drive. I emailed Steve to tell him and hoped that he could find someone to take our places. I went to work even though I wasn't feeling great but in the end I had to go home. Stephanie took me home and suggested that I should rest and maybe I would feel better and would be able to go. She told me that Steve had messaged her to see whether I was likely to feel better as they would like me to go if possible as I was an important part of parkrun. I slept for three or four hours and I confess that I did feel a lot better afterwards. I probably wouldn't have gone except that Stephanie thought I would enjoy it and that junior parkrun was important for me. She also thought that I would love see them be awarded the trophy. We did decide to go in the end.
The awards were held in a posh hotel on the outskirts of Ipswich. The room looked very beautiful with lots of starry lights in the ceiling. It was a great venue and the food was lovely too. The Junior parkrun award was later in the ceremony so there was plenty of time to listen to all of the awards. All of the awards were given to some great people and there were many deserving awards. The time came for the Elena Baltacha award. Elena was the British number one British tennis player but tragically died from liver cancer in May 2014. She was an inspirational person and her legacy lives on through her foundation. Please read more about her on her Wikipedia page
The award is given to a person who shows the positive outcome and difference that sports can make on someone's life. The award was presented by Elena's husband Nino Severino. He began the nomination "The winner of this year’s award is truly deserving of this award and is an inspiration to all showing how sport can not only aid recovery from a major health problem, but can help others. At just 53 years old he suffered a stroke whilst racing to the finish line during the Ickworth Park 10k race in 2016 that would change his life....
|Nino Severino presenting the Elena Baltacha Award|
At this point it dawned on me that he was telling my story. I could not believe it. I had no expectation of winning an award and here was someone on stage talking about all of the things I had gone through and how I had dealt with my problems. All of the people on the parkrun tables had realised that they were talking about me and the looks on their faces was astonishment. I am sure I looked equally astonished. Listening to Nino tell my story made me realise for the first time that I had achieved something that many others couldn't. I have never thought of my self as anything other an ordinary person dealing with a bad hand that life dealt me. Here was someone describing me and I thought if it hadn't been me I would have been in awe of what this person had achieved. It genuinely brought a tear to my eye. The nomination continued for a little while and at the end I was invited onto the stage to accept the Elena Baltacha Award. Nino presented me the award and he spoke to me in glowing terms and that I had achieved something amazing and I should be proud of what I had achieved. I told him that accepting the award named in honour of his wife was incredibly humbling. We turned towards the audience for the official photo and I could not help notice people standing, clapping and cheering - particularly all my friends on the parkrun tables. It was an incredible feeling listening and witnessing the audience reaction, I was on cloud 9.
|A picture of me with the award|
If you want to see the whole speech plus me receiving the award just click on the link below.
So is this post telling you how great I think I am. No it's not. Am I proud of what I have achieved? Yes of course I am. I haven't done this to boast about things, I have done this to tell stroke survivors that you all have the opportunity to be a success. I am fortunate in that I am fully mobile (my problems are cognitive, vision and memory related). You have to find your own Everest to climb. For me running was that challenge, after all my stroke happened after a race. Stroke survivors must celebrate every success however insignificant others may think them. Your Everest could be walking down the street, it could be doing a crossword or even feeding your self unaided. The trophies I won are for all stroke survivors you are all amazing and you need to tell yourself that every day. Your body tried its best to kill you but you survived. To paraphrase a quote "The stroke whispered in my ear, “You’re not strong enough to withstand the storm.” Today I whispered in the strokes ear, “I am the storm.”
Friday, 11 August 2017
|Benjamin, Bethany and me before the race|
There didn't seem much point in just running a race for the sake of it. It seemed a small leap to turn it into something a lot more positive, so I decided to fund raise for my rehabilitation centre, Icanho. I contacted them and they were delighted that I was doing this for them, they even supplied running shirts that had Livability branding. (Icanho is part of the Livability charity).
I have previously posted about running after a stroke but it does seem sensible to restate some of the issues that I face whilst running. Most people who see me would not know that I have had a stroke; I walk without a problem and I can run. What these people don't know is the struggles that I face when I run. The first one is my vision, I cannot see anything to the left or low down. If I am not vigilant then I will not see anything coming from my left whether it is a car coming out of a drive or people out for a walk. What is worse is that I cannot see where my feet are going to land without looking down. Eyesight is amazing, fully sighted people have a horizontal vision range of 210 degrees and a vertical vision range of 150 degrees. So in theory we do have a bit of vision in the back of our heads. I have lost about 40% of my vision field and this is a significant problem when running. If I am running then I have to concentrate the whole time, I cant just switch off and let the yards and miles go past. I have to be careful about whats around me. More importantly I have to concentrate where my feet are landing as i cannot see them. Fully sighted people when they run they can see their feet all the time although you don't realise it. If I am on rough terrain or even on some of our dilapidated pavements and roads then I need to make sure that I don't stumble or fall. So far while running I have never fallen although i have stumbled many times. This tends to happen when I get tired during a run. I get lazy and assume I know where my feet are landing and then that's when things go wrong.
You would probably think that my vision is the biggest problem I face while running, but it isn't. The biggest problem i have running relates to my cognitive issues. As mentioned earlier I have to concentrate the whole time to make sure I am safe. To most people this wouldn't be a major problem but to me it is. I have to concentrate to make sure I don't trip, to avoid other people and to make sure I am running a sensible pace. If I dont run sensibly then this will cause me severe cognitive problems. I will explain later how this can affect me.
Now onto the race. I was very happy that my children Benjamin and Bethany decided to join my fundraising effort. I shouldn't really call them children as they are both grown up and living in different parts of London. Stephanie was chief cheerleader. We got to Wimpole Hall early as I wanted to have a chat with the organisers as they had been very kind to promote my fundraising and had been in contact with me a few times after my stroke. It was nice to meet them in person, they also introduced me to the official starters of the race, all of them had suffered a brain injury either through a stroke or traumatic brain injury. It was nice to know that there would be others cheering me on the way.
After doing a warm up we were ready to go. Ben was going to try and run quickly he is a lot fitter (and younger) than me. Bethany decided to run with me, its not that she isn't fit but she wanted to run with me, which was appreciated. The start of a race is a stressful time for me as people are jostling for position and for space. People will change direction right in front of you without warning. That's fine but if you are partially sighted then it's a nightmare. Bethany ran on my blind side (left) this is the best side although I didn't see her at all during the race. Running on my blind side means that she protects me to an extent from people swerving from my blind side.
Once we got clear of the initial crush we settled into a reasonably quick pace. I wanted to run about 58 minutes for the 10k as that would be a tough target but my real aim was to finish in a faster time than when I had my stroke (59:57). Just after a mile we were faced with the main hill of the race. It was about 170 feet and was under a mile to make the climb. Most of the climb was in the first third of a mile. To set that in context 170 feet is the equivalent of a 17 storey building. The hill was a bit of a killer and that slowed us down considerably.
The race was mainly on rough farm tracks at this point which is difficult for me cognitively as I need to be careful of my footing. During the middle part of the race we were keeping a decent pace and were comfortably on for the target time. After 3.5 miles there was another hill and although it wasn't as severe as the first one it slowed us right down as Bethany developed a stitch. Mind you I was grateful for the rest as I was starting to struggle. The track at this point was through woods and was quite rough. As I mentioned earlier when I am tired I start to struggle cognitively. It was at this point that I started to have cognitive problems. As the terrain was uneven for the majority of the race I had used up all my reserves of mental strength. I started to babble incoherently, I was talking in a made up language and I had no control over it. I know this worried Bethany as she had never heard this before. I managed to put a thumbs up indicating I was okay. I could tell that she was concerned but I was okay physically. We continued for a little while and fortunately the path turned into grass paths through fields and was much easier terrain for me to negotiate. For this reason I began to recover my cognitive function and I was able to talk to Bethany in English. She was relieved.
|Finishing the race|
After finishing I felt very tired (the after effects of my cognitive problem was still an issue) but absolutely elated on having completed the race. I was proud of Benjamin and Bethany for running and supporting me before and during the race.
The local paper printed an article about my race and it was also on their website. http://www.buryfreepress.co.uk/news/brave-dad-completes-10k-race-a-year-after-stroke-1-7990364
Whilst part of doing the race was to tell my stroke that I wasn't beaten and that it would not stop me from achieving goals, the main purpose was to raise money for Icanho. At the time of writing the amount we raised is £2200 which was vastly in excess of what I thought we would raise. I am proud of this achievement and I know that it will make a difference, however small, to other brain injury survivors. You can still donate to Icanho by following this link. https://www.justgiving.com/fundraising/davidswalesicanho