London Marathon Livability reception

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 rowellswales@yahoo.co.uk

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.

Running the Wimpole Hall 10k

Benjamin, Bethany and me before the race

From earlier blog posts you will have found out that I had my stroke after running the Ickworth Park 10k which was organised by Hoohah. One of the goals I set myself at the start of rehabilitation with Icanho was that I would run a 10k race at the same event but a year later.  Unfortunately they did not organise one at Ickworth Park so I had to do the next best thing and run a different Hoohah race as close to the anniversary of my stroke. The one that fitted the bill was the Wimpole Hall 10k race organised by Hoohah.

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

At this point we were probably only a mile from the finish and looking at my watch I realised that we could still make under the hour which was my realistic target.  Although the remainder of the race was a gentle uphill we managed to increase our pace.  Running towards the finishing line was great as there were plenty of people cheering in runners including the chief Cheerleader Stephanie and Ben who had finished 10 minutes before us.  Bethany and I held hands over the finish line and we finished in exactly 59:00.  So over a year had passed since my stroke and I finished a trail 10k race 57 seconds quicker than when I had my stroke.  

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

You can learn a lot about being a stroke survivor from the Star Wars movies

I saw a post on Twitter about a runner that related quotes from the Star Wars franchise to his running experiences. I thought it was a great idea so I have shamelessly copied the idea (and many of the quotes) and applied the same idea to stroke survivors.

So here goes with my version of things that Star Wars can be applied to living with stroke.

1) “Try not. Do or do not. There is no try.” – Yoda. If something is important to you will focus your efforts toward that aim until you succeed. Just saying you will try there is an implication that you are not putting your full heart into it. Although for stroke survivors sometimes all we can do is try. I am not convinced Yoda is right with this quote but it is probably one of the most memorable quotes so couldn't ignore it.

2) "There are always two. A Master and an Apprentice." – Yoda. We should never stop learning. Whether it's learning about our stroke or about how to cope with its impact we can always learn from others. Remember one day you will the apprentice and the next you will be the master.

3) Embrace being a Master (stroke survivor) - Yoda. Our strokes are probably the single most life changing event in our lives but it does not define us. We need to recognise that being a stroke survivor is important in our lives but we should embrace the fact that we survived. 

4) "Fear is the path to the dark side. Fear leads to anger. Anger leads to hate. Hate leads to suffering." - Yoda. I am sure we have all been scared at times since our strokes. Sometimes if you are having a bad stroke day then fear can rear its ugly head. Focusing on fear will become a problem as it will start to dominate your life. A physiological reaction to a fear is fight or flight and it is the fight aspect that this quote refers to. When the fight response happens we can emotionally hurt people who are close to us. Sometimes its easy to hit out at our loved ones when we are fearful and it's at these times we should be leaning on our loved ones.

5) “Don’t underestimate the power of the Force”- Darth Vader. Believe in yourself. You can accomplish so much more with confidence then you can with negative thoughts. Whether you are a person of faith or not, having a positive outlook on life will help pull you through some of the tough times.

6) “Great kid! Don’t get cocky”- Han Solo. We are all experts on our own strokes but know little about everyone else's even if we think we do. When you have seen one stroke, you have seen one stroke. Do not put others down, instead build them up. I see many posts on forums when people get angry and frustrated with peoples responses. It is easy to get dragged in to the discussion and then everyone has there own opinion and it goes downhill from there. It then gets to the situation as noted in 4 above.

7) “I have a bad feeling about this.” Numerous Characters. Our bodies are wonderful things and they are the greatest gift we have ever been given. Sometimes things go wrong and stroke survivors know this to our cost. Every stroke survivors experience of their stroke is different. I am sure there are many of us who could have used this quote while we were having our stroke or shortly thereafter. Although for me this quote only became reality about 4 hours after my stroke when I realised I still couldn't see to my left and it was not an ordinary migraine as I had originally thought.

8) “In my experience there is no such thing as luck.”- Obi Wan Kenobi. Do not attribute your successes or failures to luck. Stroke survivors work so hard on their recovery. To people who don't live in my head you can't even imagine the effort it takes for me to appear normal. It isn't luck, it's very hard work and is exhausting. I do not make light of my effort and I do not make excuses for a lack of it.

10) “It’s a trap!” - Admiral Ackbar. You cannot avoid the choices you make, at some point the bad decisions will catch up on you. For a long time I blamed myself for my stroke. I put myself under pressure by taking on more and more work and never asking for help. At some point something had to give and it was at that point I had my stroke. I am sure the reasons for my stroke are far more complex but sometimes your life choices put you into the trap and sooner or later that trap will spring shut.

11) “Is that possible?” -Rey to Han Solo. “I never ask that question until after we’ve done it.” –Han Solo in response. Never sell yourself short and do not be afraid to try new things.

12) “Always pass on what you have learned.” - Yoda to Luke As a stroke survivor I love to share my knowledge and help others if I can. I am very conscious that everyone's stroke and experience of a stroke is different but if I can help someone I will. Fortunately there are many stroke survivors who share this view and I am grateful for their experience. I also think that its important to share my experience with non stroke survivors. I am amazed at how little people know about stroke. I was one of the people who knew so little before my stroke. I didn't recognise the symptoms when it happened to me mainly because I only knew about FAST and not that sight problems were also a symptom in up to two thirds of strokes.

13) “Your focus determines your reality.”-Qui-Gon Jinn. As a stroke survivor it's important for me to be rigorous in keeping my mind set on the goals I have set. Whether its running a 10k race in under an hour or completing a task at work. Whatever happens, the more focused I am will determine a better outcome and will be my reality.

14) “I find your lack of faith disturbing.” - Darth Vader. If you don’t believe in yourself who will?

15) “Be brave and don’t look back. Don’t look back.”-Shmi Skywalker. When you have faced so much in surviving a stroke it is absolutely essential to be brave. To then have the further strength to not look back at what you were or what actually happened takes extraordinary bravery. As stroke survivors we must look to the future to become the best person we possibly can and that is a tough thing to aim for.

16) “Never tell me the odds.”-Han Solo. After having my stroke the first thing I did was to do a bit of research and found that 30% of people who have a stroke die within a year. The problem with statistics is that context is all important. As stroke is still predominately aged related the 30% mainly consists of elderly stroke survivors. That doesn't make it any better but for a younger survivor the basic statistic is scary. I do know that my life expectancy has decreased but that doesn't mean I will die any earlier but the is greater chance that I will. So not looking at the odds is something that we should be aware of but don't stress out too much. I plan to be around for a long time to come.

17) “Patience you must have my young padawan.”- Yoda. Recovering from a stroke is a long and difficult struggle. Little bits of progress can easily be overshadowed by setbacks. Being patient, however tough it might be, is essential for our emotional and mental health.

18) "Be mindful of the future, but not at the expense of the moment." Qui-Gon Jinn. It's easy to just be focused on the future and previous paragraphs stress the importance of thinking about the future. Slavishly focusing on the future and not enjoying the successes that we have means we will not appreciate the progress that has been made.

19) “Would it help if I got out and pushed?”- Princess Leia to Han Solo. Sometimes we all need that person helping to push us on those tough days. Being a stroke survivor can be very lonely no matter how many close friends and family we have. Having people around to give us that bit of help is important no matter how self sufficient we want to be. We do need to appreciate the times when we need that little push.

20) “Stay on target,”- Gold Five. Stay focused on your goals, as a stroke survivor I need to have things to aim for as it gives me things to target but it also gives something to measure success against. How do I know I'm getting better if I don't have a standard to measure against.

21) “This is a new day, a new beginning.”- Ahsoka Tano. Had a bad stroke day or bad experience? Tomorrow is a new day. Move on and let it go. This is tough to do as our future is quite often forged by the experiences of our past. What is important that we move on from bad experiences.

22) “Nothing will stand in our way.”-Kylo Ren. Refuse to be held back. Do all you can to reach your goals. As a stroke survivor we have to deal with problems and emotions that other people can hardly imagine. So we must be determined to progress and make our recovery happen.

23) “Be careful not to choke on your aspirations”-Darth Vader in Rogue One. Do not get tunnel vision where all your focus is on yourself at the expense of family and your loved ones. It is easy to be so caught up in our own stroke lives that we forget that the people in our lives have their own worries and problems. We might be one of those worries so make sure that we spend time considering the needs of others and not just ourselves.

24) “You don’t have to do this to impress me.” - Princess Leia. Sometimes even stroke survivors have things to celebrate when we do something for the first time or solve a problem. Trust me when I tell you all about it I am not trying to impress you I am sharing a breakthrough or something that is important. I want to celebrate.

25) “Yeah… you’re a real hero.” - Han Solo. This is said with a big dollop of sarcasm, but as stroke survivor we should consider ourselves as heroes. We have survived a life threatening illness and have been left with disabilities yet we still continue to live and try our best to live life to the fullest. So we are heroes every single one of us.

26) “We seem to be made to suffer. It’s our lot in life.” C-3PO. At times, in our darkest moments, it is natural to feelings like this. People don't understand how hard it is living with the impacts of a stroke. To look at me you would not know that I had a stroke and many people will assume that things are not that bad. Trust me, being inside the brain of a stroke survivor is not an easy place to be. I don't believe that this quote should be something that stroke survivors should believe, we are strong and have to overcome the struggles that we face.

27) "Many of the truths that we cling to depend on our point of view." Obi-Wan Kenobi. Being a stroke survivor I find it important to hold onto certain principles about my new life. For me they are important but others don't understand why it is important. For example people don't understand why I want to run races again after having my stroke after one. After all it would be easy to stop but to me its that I won't let the stroke beat me and running gives me that power over the stroke.

28) "The Force is strong with this one." - Darth Vader. Never underestimate a stroke survivor, they survived a life threatening illness. The strength within us is strong and we will continue to fight. 

29) "Sometimes we must let go of our pride and do what is requested of us." - Padme. Since my stroke I have definitely become more stubborn and don't like being told not to do something if the person doesn't think I should do it. Sometimes we do have to listen to that person as they may be right. An example: It was suggested that I didn't run a particular race as I was having a very bad stroke day. I really wanted to run as I felt that not running was letting my stroke win that day. However, I did see sense and did not run, whilst I was disappointed deep down I knew it was the right decision.

I am sure there are many other quotes I could have used. I would be interested on other peoples thoughts on their favourite quotes. I hope you have enjoyed this post, it was definitely not my normal type of post.

Big catch up

We all go through our lives with very little thought to our own mortality. We hardly ever think how fragile life is and how our decisions are automatically aimed towards our own preservation. We cross roads safely, most of us drive in a way that keeps us safe, when there is a steep cliff we keep away from the edge. It is summed up as follows:

The Instinct Theory of Motivation views biological or genetic programming as the cause of motivation. This claim means that all humans have the same motivations due to our similar biological programming. This theory says that the root of all motivations is the motivation to survive.

But what happens when something totally out of your control takes you to a point in your life where you are on a tightrope walk between life and death. There is nothing that you can do at that point that will have any impact on your survival. You simply can't step back onto the pavement, turn the steering wheel or step away from the cliff edge. I didn't even know when I had my stroke that I was even on a tightrope. I don't know how close I was to dying what if the clot was larger or damaged a different part of my brain. Looking back now I know that this was the closest I have been to dying and that I hadn't got a clue. I think that because I had a stroke I wasn't thinking rationally. If you ask yourself "what would I do if I suddenly went blind for a few minutes". Your response is unlikely to be that's a bit odd and do nothing. That was my response and I didn't do anything about it for a few hours.

I started writing this post in the final few days of 2016 this year will be remembered for the deaths of many celebrities and many people have been touched by the loss of so many great stars. Maybe you are a Prince, George Michael, Maurice White (Earth, Wind and Fire) fan or maybe music is not your thing and you have mourned the loss of great actors such as Alan Rickman, Carrie Fisher or Debbie Reynolds. While these deaths are very tragic we are remote from these people and only know them through their celebrity and their lives played out through either their art or through the media. We have no knowledge of them as people. What is more important to us are the things that have affected us personally during the year, whether this is the loss of a loved one, the break up of a relationship or as in my case a life changing illness.

It is now February and I am determined that the posts that will happen from now on will be a lot more positive. I am by nature a positive person. In terms of the timeline since my stroke there are a few things that happened that I should catch you up.

In July I went for a check up at the hospital. I was having a particularly fuzzy day and was not making a great deal of sense. The consultant was quite concerned as the last time he had seen me I was reasonably lucid.  He was so worried that he admitted me to hospital there and then. He thought that I might have had another stroke. After a MRI it was confirmed that I had not had a further stroke. I spent 4 days in the stroke ward. It was not a nice place to be. The rest of the patients were a lot older (the youngest in my bay was 25 years older than me). They were also a lot sicker than I was. It was quite a sobering experience being on the stroke ward.  The doctors, nurses and other staff were truly amazing, particularly the nurses. Its not until you experience an inpatient stay do you truly understand the care that nurses and healthcare assistants provide. Whilst it was a difficult experience I will forever appreciate the job they all do.

July was also the month where both of the children graduated from their university courses. Whilst I was dreading the day and hoping that I would have a good day they turned out to be wonderful days. You are always proud of your children's achievements but their graduations were both celebrations of how far they both have come in their lives. We were immensely proud of them both.

At the end of July we went on holiday to America. This was again something I had reservations about but it was a great holiday. I did have to take it easy and planned rest into most of the days.  I also didn't feel too much of a burden. I did enjoy the holiday a great deal. My favourite part was meeting up with old friends both in Tennessee and Georgia. We spent about a week with our friends in Georgia and I was able to relax and enjoy their company. It really was a special time catching up and relaxing.

I am not sure there is much more to catch up on in terms of specific events although I will post further about my rehabilitation and starting running again.

Further tough times

It has been a very long time since I have posted anything in my blog. The reason I haven't posted is that I discovered that my parents found my blog and it made me feel uncomfortable that they were reading things that I didn't want them to read. I don't want them to worry too much.  I know I can't stop them reading this but I hope that they accept that this is something that helps me and is not meant to cause worry. So to pick up where I left off......

This is another quite tough post to make although I actually feel positive about its consequences.  It does describe how depression can have a cumulative impact on a person.

I had to have an echocardiogram to see if there were any obvious reasons for my stroke.  It was very interesting watching the images on the screen.  They meant nothing at all to me.  At the end of the test I was told that there were obvious signs of a stroke but that I have a heart defect.  I have a bicuspid valve. this happens when two of the three leaves of a valve fuse together.  It is quite a common defect and doesn't normally require any specific attention although it can cause problems in later life.  As a result of this I will have to have regular echocardiograms.  I will also require a small heart monitor to be inserted into my chest to check for other irregularities.  

It seems to me that what else could get thrown at me: first a stroke, then kidney stones and now a heart defect.  Whilst the most serious issue was the stroke it did seem that there was a never ending stream of issues were arising.  As the heart defect was hereditary I told my dad and asked him to let the rest of my sisters and brother know.  They could also have the defect and I wanted to make sure that they were aware so they could get themselves tested if they wished.

It was shortly after this that I had a run of four consecutive days where a series of events affected me and were difficult to deal with. 

First: someone i knew of had a stroke at about the same time as me.  Initially he was in a much worse condition than me and was in intensive care for some time.  The thing that affected me that within a few months since his stroke he was almost fully recovered whereas I felt I had made little progress.  I had permanent sight loss and there was no news of any rehab for the problems with executive function. I was pleased that he had made so much progress it was hard to accept that I had had made no significant improvement.

Second: the MP Jo Cox was murdered.  This was a terrible event that shocked the world.  I could not stop thinking about her children and that they would grow up without their mother.  The coverage was wall-to-wall and in hindsight I should have turned it off.  I didn't and the distress that this event caused was preying on my mind.

Third: the 3 month anniversary of my stroke.  I have started to consider my stroke as a different person inside of me. This new person was doing their best to bring me down and it was my job to fight it and eventually beat it. When you start dating someone there is an initial period where you remember little anniversaries, first week, first month etc.  It is like that with my stroke and I had reached another little anniversary 3 months or one quarter of a year.  Again this made me think about what had happened, how it had affected me and how little progress I had made.  

Fourth: it was my 28th wedding anniversary.  You can't help but reminisce about the person you were when you got married. 28 years ago I had a full head of hair, a happy personal life, a job that I worked hard at and enjoyed, I also had a brain that functioned properly.  Comparing that day with now, I still have a very happy personal life but I have a lot less hair, a job that I love but cannot do and a damaged brain that is struggling to recover.

So these four things on consecutive days added together made me feel very down. It really seemed that my stroke was winning.  It is difficult not to start to wallow in self pity and really get you into a bad position.  The one thing that I have always had on the positive side is Stephanie and Benjamin and Bethany.  I know that they have also struggled with my stroke both the shock and worry of the initial event but also of how how it has changed my life.  They are always with me no matter what I am doing if not physically then they are in my mind.

So I say to my stroke you will not beat me. I am a strong person and I have a lot of support that means that if I stumble they will stop me falling!!

My stroke aged my brain by thirty years in a matter of moments

I haven't posted for a little while and thought it was about time that I did an update.  It's difficult to remember all the things that were happening at this time.  There were lots of appointments for various issues associated with my stroke.  The one thing I hadn't heard about was an appointment about my loss of eyesight.  I was told that I would hear from the orthoptist about an evaluation.  I decided to phone the stroke service and ask.  This is the only part of my care that fell below a high standard.  Over a couple of days I left messages on the answer machine but no response.  After a number of tries I managed to get hold of someone who said that someone would phone me back later that day.  No one phoned.  I have noticed since my stroke that I get very anxious about what people say and do.  I was starting to get stressed about this as an issue.  I phoned again and was told the same thing and there was still no phone call.  I did have to go to the hospital for a blood test so I stopped by the office.  I managed to catch my boss and mentioned that there had been no contact from the eye service.  It is the only time that I have used my employment to bypass a system. I had a phone call that day and an emergency appointment the following day.  The person apologised as I had slipped through the system and should have had the appointment a couple of weeks after the stroke.

I went to the appointment the next day and my eyesight was assessed.  It didn't tell me anything new but I was told that it was unlikely to recover the eyesight loss as the majority of improvement comes in the first couple of days. Any change beyond would be slow and marginal.  The tests undertaken would set a benchmark for future tests to be compared against.  After the orthoptist I met with the low vision coordinator who spoke to me about the various organisations that assisted with sight loss.  The one devastating news was that it was suggested that I returned my driving licence.  Although I had suspected that this was a likely outcome it still comes as a shock.  If you are a driver think about how much your life would change if you were told you can never drive again.  For me it was about a total loss of independence.  I could never just nip into town, go to get DIY supplies or take rubbish to the dump.  More dramatically it would mean reliance on others for longer trips such as visiting the children, other relatives or holiday trips.  In the past I have always done all of the longer trips.  I don't really know why but that's one of my "jobs" in the family.  I must have looked down about being told to return my driving licence as later that day I had a call from my GP's surgery enquiring after my mental health.  I was asked if I thought I might hurt myself.  My answer was emphatically no!! Although I know I was depressed I have never once considered harming myself.  I understand why I got the call and it was appreciated. 

The request to return my licence brought into sharp focus our impending holiday to America.  The planned holiday involved a significant amount of driving (almost 2,000 miles) and I was the only one who was able to drive the hire car.  Stephanie had got a great deal on car hire many months previously.  We contacted the company and they would not accept a change to the main driver as it would have to be a new contract.  It was going to cost £500 more and they would not allow Ben to drive as he was under 25.  Eventually we found a car hire company that would accept Ben as a driver but it was a lot more expensive than the previous deal.

We started to look into how our holiday insurance would be affected.  We had taken previously taken out a family annual travel policy with Barclays.  Although I anticipated that they would want an increased premium I didn't expect them to refuse to insure me.  I understand that they have to manage risk but to turn round and say no we wont insure you was a surprise.  I tried a few places and was surprised by one insurer which had a very cheap policy.  It wasn't until i saw the exclusions that I realised the reason.  There were exclusions for anything to do with stroke, diabetes or kidney stones.  I had another quote of £2,500 for just the time of our holiday.  We eventually managed to find a more reasonable policy that only cost an additional £300.

Even with the added expense there was still the question of whether I should travel anyway.  I had been advised that there was no medical reason why I should not fly.  It was always caveated with the proviso that I would have to feel up to it.  I was always told that I would have to take things easy while I was there.  After a lot of thought I decided that it was best for the family as a whole to go on the holiday.  We had been planning for it for so long to cancel now would be a very negative thing to do.  Cancelling would have been bad for my depression and would have added to the guilt that I had been feeling since my stroke.

I am not sure what else to add at this point, its not been the best of posts but it isn't always doom and gloom.  Someone did say that I should note down some of the silly things I have done since my stroke.  I will share one now.

I was on hold to speak to someone and it was taking ages.  I decided to not waste the time and started to clean out the aquarium.  Instead of putting the phone on speaker i decided to hold it with my shoulder.  I am sure you have guessed that i managed to drop the phone into the aquarium.  Whilst that was a silly thing to do it is not the point of this story.  My sister in law told Stephanie that the best thing to do was to put the phone in a plastic bag with some rice and put it in the airing cupboard.  I said I would do this and went away and sorted it out.  Go forward a couple of days and Stephanie remembered the phone and asked me to get it out of the airing cupboard.  I replied that I hadn't put it in the airing cupboard but had left it in the freezer.  Believe you me, it was totally finished off after a few days at minus twenty.  In my defence I must have got confused as I had got out a freezer bag!!

To all of you who are saying "that's the sort of thing that I do" remember you may do forgetful tings occasionally but I do it all the time.  I know that old age has an impact on memory and that as you get older forgetful things do increase.  My stroke aged my brain by thirty years in a matter of moments, that is the reality that I am facing.  The good news is that as I recover my brain will find ways to rewire itself and I will hopefully have a brain that's the same age as the rest of my body.

Executive function and depression

I will start this blog with a picture, it's quite a positive quote, it seemed to sum up what it is like to have a stroke and to survive.  This post deals with some difficult issues and at times they appear to be an all consuming fire and unless you fight you will be swallowed up.

Life started to settle down into a regular routine of hospital, GP, rehab, walks etc.  There were a number of things that I was waiting for. One of which was a neurological assessment by a consultant psychologist.  This had been arranged and then cancelled as the psychologist was off sick.  I was concerned about the assessment as it was to look further into the problems I was having thinking.

They day came and the assessment took 4.5 hours to undertake.  After this I was totally exhausted mentally and it took several days to recover.  I found the process interesting as it used a lot of testing that was statistically based and as I had done a degree in statistics it was something I could understand.  The results of the assessment were quite distressing.  The good news was I was described as follows:

Mr Swales is a Superior-functioning individual whose verbal and non-verbal effectiveness place him between the 99th and 95th percentiles. These levels are slight underestimates.

This is a direct quote and the scoring was based on some baseline knowledge tests that did not require significant brain power to do.  The recognition of this is something that was important to me as the previous tests did not take into account my abilities before the test and certainly took no account of my age. The previous tests made me look good as I was being compared to other stroke survivors who were typically 25-30 years older than me.

The tests continued and I did some well and some badly dependent on what they were.  The tests I recall were:

Colours were written in a different colour to the word. I've the word blue was written in red ink.  I had to say the colour of the ink.  I knew that I struggled with the exercise as I took a long time and made a few errors.  When the results came back I was shocked.  I had scored in the zero percentile.  This meant that compared to the non brain injured population I would have finished bottom.

I had to name as many animals and fruit alternating between the two, I think they had to begin with certain letters as well.  Although I was accurate and switched well between the categories I didn't name enough to have a score that counted.  I.e. I was in the zero percentile.

I had to link letters and number in increasing order I.e. 1-a-2-b-3-c etc.  I knew I had done badly and the result showed this as I was in the 35th percentile.

The tower of Hanoi. When I saw this test come up I was really confident as I used to do this a lot as a child.  I decided to be methodical about the exercise as I knew that was the key.  I managed to do all of the tasks and although I knew I was slow I was pleased. Unfortunately I was a lot worse than I thought.  I was accurate and did get to the right answers I took a lot more moves and time than I was supposed to.  I was back into the zero percentile again.

I had to describe a word that was given and these increased in difficulty and became more abstract. I would get points depending on how I described the word 5 marks for a perfect answer.  An example was the word yesterday.  All I could say that it wasn't today and pointed backwards.  I got 2 marks. The correct answer was the day before today. I could not find the correct definition even though I knew what it was.  I did okay on this test but only around the 40th percentile.

There were other tests but I don't recall them.  When looking at my performance the consultant said that it was important to compare how I did compared to the baseline assessments of a superior functioning individual as this would show the level of impairment that I suffered.  It was clear from this that I had significant impairment in some areas.

The conclusion of the report was that I have a pronounced impairment of my executive function. The report stated:

Executive demands, however, reduce his efficacy from the 95th through to the 77th to the 0th percentiles for Working Memory, Verbal Fluency and Paced Mental Control/Inhibition.

Executive demands compromise Mr Swales’ effectiveness, and time pressure especially impairs it. He is highly susceptible to distraction, interference and intrusive errors. He is unable to martial his abilities, to regain and to redirect focus on the problem, and to generate a solution within prescribed time constraints.

The report also said that it could take up to a year of specialised rehabilitation before I would get back to my pre-stroke abilities.  As I haven't yet started this rehab (my rehab starts in September 2016) it is a very long time away.

The report was quite a shock and was enormously upsetting.  The psychologist also stated that I was depressed.  I had realised that I had days that were difficult emotionally but this was the first time someone described it as depression.  I have read up a lot about stroke and it is very clear that depression is a common occurrence in stroke survivors particularly those who are still of working age. 

There have been many days when things have got too much for me and it is difficult to deal with those emotions. I tried not to show these emotions too much as I am not used to being emotional in public or in private for that matter. I didn't want to show I was weak to Stephanie or the children.  

I had a GP appointment early one morning and I was in the waiting room by myself.  I was looking round the walls and seeing the illnesses and things that people suffered from.  All I could think of was that my life consisted of an endless procession of appointments, with people telling me it will all be alright. But it was simply not true. Things will never be alright, I will always have to deal with some impact of my stroke whether it was the eyesight, problems with words or thinking.  At that moment it got too much for me and I started crying in the doctors surgery. Fortunately my GP called me in at that point.  He was very good and reassuring and he was able to talk about what I was feeling.  He did prescribe anti depressants and arranged for another appointment. He also set up some counselling to help. It's hard to describe how I felt and although I had become depressed recently I started to appreciate how debilitating it can be. 

I know that i am a strong person and that the fire inside of me burns bright, but there are times when that fire dims but i know that it will not be extinguished.  I will not let my stroke ruin my life.  There is so much more I want to do - I might not know what but my stroke will not define my life. 

All my posts at the moment seem to be describing bad times.  I do have good times as well and things do get better.  However, I am sure I will get into the topic of depression again, but I will leave it for the time being.