Friday, 11 August 2017

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





Monday, 24 April 2017

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.

Monday, 17 April 2017

My first stroke annivesary

Today (17 April 2017) is an important day, it's a day that most stroke survivors have feelings about, some will celebrate, some will mourn and others will treat it as just another day. It is exactly a year since my stroke. It's hard to know what to think about it. Should I be happy that it is a year since I came closest to dying but survived. Should I mourn the loss of so many things that were part of me yet have now gone or should it just be another day that I get through trying the best I can be with the challenges I face.

I think it is a combination of the first two and dependent on what I am thinking about one or other becomes the dominant thought.


What have I got to celebrate. Well the first thing is I am currently alive and kicking. If things had been different on that day the outcome and my recovery could have been vastly different. I was fortunate that the clot that went to my brain damaged only two places. The first place was the right occipital lobe, this controls eyesight to the left. The damage is irreparable and no matter how much my brain rewires itself I will always have lost 40% of my vision field. Even with this there is something to be positive about. I still have 60% of my vision field. I can still see sunrises, sunsets, beautiful scenery, people and so many other wonderful things to be seen. Okay I have to turn my head from side to side to see the full glory of this world but that's not a big deal is it? The second place it damaged was the thalamus. This is located just above the brain stem and although the damage was slight it has had the biggest impact. The damage has resulted in aphasia (speech problems), cognitive problems, memory and attention issues. Although these are the things that bother me the most it still could have been worse. Thalamic strokes can be catastrophic causing significant disability or even death.  So just for medical reasons I have reasons to celebrate.

Yet there is even more to celebrate. I have a wonderful family and although I have never doubted their love for me, when you face major health issues they play such an important part in recovery. Whether it is just looking after me, cheering me up when I am down, giving me a huggle or taking me away for a short break in Wales, it is something I will always be grateful for and is well worth celebrating.

So what right do I have to mourn. Well mourning is feeling sadness or regret for the loss of something, so yes absolutely I have a right to mourn. I have lost so many things that are important. I have listed some of them above so I wont repeat them. In summing things up what do I mourn; the main thing is my old self. Many of you who know me will see that there are many things that are still there and most of these are quite superficial. I still can have a laugh and a joke, I still know a lot of useful facts. Those of you who know me well see the struggles that I face day by day and how things affect me. Forgetting to put a coffee capsule in the coffee machine may seem trivial but if I forget to take my tablets or leave home without a front door key then it is a lot more important. For me all these are things that the old me would never do, so the new me gets frustrated with myself easily for relatively trivial things.  It is at specific times that the sense of loss is felt more acutely for example:
my birthday another year goes past and not sufficient progress in my recovery, my wedding anniversary I am not the same person who got married, Christmas is a time for lively family times but because of my cognitive problems I find I have to retreat into a shell as this helps insulate me from sensory overload. I now have to experience the anniversary of my stroke when all of the feeling and memories of that time come flooding back. So I honestly believe I have a right to mourn the loss of the old me. Don't mistake this for feeling sorry for myself, this feeling passed a long time go.

The final thing that people think about their stroke anniversary is that it's just another day. Yes the day still has 24 hours each containing 60 minutes of 60 seconds. So in that sense it is just another day. I will wake up the same as always, I will have breakfast and then go about the normal business of the day whatever that might be. It is not just another day though, it is a day that I will remember when my life changed and not for the better. I will never get back to the person who existed before then. It's not that I don't like the new me but the old me had less worries and never had to wake up wondering whether it was going to be a good or bad stroke day.  If you haven't got fed up reading this far I will ask you a question. Do you ever wake up and think "I am well and all is fine?" The answer is probably rarely. Well every morning I wake up and I don't think that. Every day I wake up and know that I have had a stroke and sometimes it is hard to cope with. I genuinely hope that tomorrow morning you wake up and think "I am well and everything is fine"

So for me its both a celebration of what is important in my life tinged with mourning for the lost me. To sum up my feelings on the first anniversary of my stroke I wish I hadn't had a stroke but sometimes you get dealt a hand of cards and you are stuck with them no matter how hard you want a new deal. 

Some very kind people have described me as inspirational for writing this blog or for continuing running but I don't think I am. All I am is an ordinary middle aged man, trying to live an ordinary middle aged life in the best way I can.

If you have managed to get to the end of this long blog post then well done I hope you enjoyed it. Happy first stroke anniversary to me. May there be many more to come!!




Thursday, 13 April 2017

Running after a stroke

Many of you will know that I am a keen runner. I am not a great runner and have no aspirations to be nothing more than a keen plodder with the occasional race thrown in for good measure. 

I started running when I decided that I needed to get serious about my health. I had been a diabetic for a few years and originally was told to use diet and exercise to control it. I was pretty good at the diet bit, but other than the occasional walk, I never did much exercise. There was no specific incident that got me started I guess i just thought it would be a good idea. It was an evening in February 2015 when I first put on my trainers and ventured out for a run. I always thought that even though I hadn't done much exercise i was in good shape. I was totally wrong. I couldn't even run to the end of my road before having to slow to a walk. I don't know how far I ran that evening but it was less than a mile.  I could have easily given up that day, I was cold, tired and fed up that I wasn't as fit as I thought. I didn't give up though. The one thing that most people know about me is I am not a quitter. I carried on trying to go out a few times a week gradually increasing the distance I was running. Running in the evening around the estate where we live wasn't enthralling and I was starting to find my enthusiasm waning. 

There were two things that were instrumental in me becoming a more serious runner.  The first was that I decided to run the North Wales Half Marathon and raise money for Diabetes UK and the Diabetes service at my local hospital. It was great that my sister and her family also entered raising money for Diabetes as well. Having an event to train for kept me on the straight and narrow. I started to increase the frequency and distance I was running. I find that to keep me focused I need a target and the half marathon was just the thing to keep me running. 


I always finished parkrun with a sprint
The second thing was that I found parkrun. I don't recall how I heard about it but I decided to give it a go. Again I thought that running with others would keep me focused. I went to my first parkrun in early May 2015. Straight away I knew that this was an event I really could get involved with. Everyone was very friendly and it was nice to see people that I knew from work and from previous jobs. When I first got there I expected everyone to be a lot quicker and fitter than me but I was wrong there were people of all abilities and fitness levels. I did not feel the slightest bit out of place. Parkrun became part of my normal week. If I wasn't able to run I missed it. If I was injured then I used to volunteer and that was just as enjoyable. If you are a runner at any level and are finding things tough going then give parkrun a go. 

By the time the half marathon arrived in July 2015 I felt quite prepared but nothing quite prepared me for what the run entailed. I knew that it was a tough run but that's what I wanted. After all if you are going to raise money you have to push yourself; it has to be more than a walk in the park. The run started on the beach in Conway. The first 1.2 miles was along the beach it was firm sand as the tide had only just gone out. The route then went along the prom until mile 5 and after then it went up a mountain for 3.5 miles. The route dropped down back into Conway. The last 1.2 miles were back along the beach, by now the sand was soft. So after almost 12 miles of hard running there was the torture of running through soft sand. To add to the struggle I had a hypoglycemic attack (low sugar) around mile 11 when I had to stop and eat a sugar snack to boost my sugars to a safe level. The total climb during the race was 1,740 feet which is over  one and half times the height of the Shard. I finished the run in 2:26 it was slower than I wanted but I was proud of what we had all achieved. My nephews and niece all finished well ahead of my and my sister and brother in law finished shortly after me. the biggest achievement that between us we had raised over £2,000 for diabetes research and diabetes services. 

Having met the challenge of the half marathon I had definitely got the running bug and continued to run at least a few times a week. I also joined my local running club, the Saint Edmunds Pacers. Again this was another way to keep myself motivated particularly when the nights drew in and the weather worsened.

Coming in to 2016 I decided that I need to set a few more challenges and booked up for a number of races. These were the ones I entered:

  • The Suffolk Cross Country Championship
  • Ickworth Park - Suffolk Trail Runners event
  • The Tarpley 10 mile race - a local event organised by my running club
  • Ickworth Park 10k organised by Hoohah
  • Thurston 10k run 
  • Flaming June half marathon.

It turned out I only ran the first four of these events before I had my stroke. 

The Suffolk Cross Championship was the muddiest race I have ever run in. There were parts where the mud was almost to your knees. the good news was that I was the 147th quickest cross country runner in Suffolk, I try and ignore the fact that I was fourth last to finish. I did enjoy the run but made a mental note not to run it again.

The Tarpley 10 was a road race through villages just outside Bury St Edmunds. I finished 262 out of 304 a result that I was very pleased with. I was a lovely day for running and i broke my 10 mile PB by over 5 minutes.


Mud, mud, glorious mud
The most significant race in my life happened on 17 April 2016. It was the Ickworth Park 10k. It was part of the Hoohah race series. The previous week there had been a significant amount of rain and we were warned that the course was very muddy in parts. The day itself was a lovely spring day and the sun was out although it was not too hot. I set myself the target of completing the race in under an hour. I thought that this was a reasonable target as although I could run 10k in under the hour given the conditions and that there were a number of steep hills (they were steep for East Anglia). The first part of the race was fairly easy with a gentle downhill section on a hard country track. I felt very good and confident about the pace I was running. Once the bottom of the hill was reached the ground became quite muddy and it became a task trying to spot a firm route through the mud. Again I was running well and kept a good pace but at a slower rate. I was passing more people than were passing me and this always make you feel good. Once we got the wooded section the mud became very bad and footing was difficult and it definitely slowed everyone down. At about 8km I lost my footing in the mud and fell quite hard onto my side into the mud. Fortunately wasn't too bad but you could clearly tell that I had fallen over. The rest of the run I had comments about falling over in the mud, they were encouraging though. 


Crossing the finish line 30-40 minutes before my stroke
The last 1.3 km of the race were uphill along the park roads. I looked at my watch and realised that I was not going to be under 1 hour unless I speed up considerably. I don't like not achieving my goals so I gradually sped up and then put my foot down for the last 400m. I ran this at a pace of 6.4 minute mile pace and managed to finish the race in 59:57. I hit my target with 3 seconds to spare and finished in 252 place out of 633. I confess that I knew I had pushed too hard as I wanted to be sick. However I wasn't but did have to lie down and recover. It was great to chat with other runners after the race although I decided to drive back home as I was feeling very tired. 


My muddy legs a couple of minutes before my stroke
After I got home I wasn't feeling great and after about 30 minutes I had my stroke. The only symptom I had was that I suddenly went blind and after a few minutes my vision appeared to come back (I didn't notice that I was missing 40% of my eyesight though). I didn't know I had a stroke I just thought I had a very sudden migraine. I thought a stroke was indicated by FAST (Face drooping, Arms limp, Speech slurred and Time) I didn't know that Balance and Eyesight problems are present in more than 50% of strokes. I am now an advocate of BE-FAST for recognising stroke. If you learn one thing from this blog remember BE-FAST it could save the life of you or someone you love. Although my stroke happened after a race there must have been underlying reasons for the clot to be there (I still don't know what those reasons are). What I do know is the over exertion in that race caused the clot somewhere in my body to shear off and travel to my brain where it caused irreparable harm. I won't go into anymore details of this time, you can read it in earlier blog posts.

Since my stroke running is just as important in life as it was before. Exercise is something that is recommended for all stroke survivors. The only thing I am very conscious of while running is over exerting myself. I find this incredibly hard, I ask you who doesn't speed up towards the end of a race to get that one place closer to the front or knock that extra second off a PB. 

Also when I run its like a sword of Damocles hanging over me. Will I have another stroke if I run that bit faster. The thought of another stroke is always at the forefront of my mind when running and not just in a race, even in training runs it is always there somewhere in my mind. People have said that I am brave for running after having a stroke after a race.  I am not brave, to me its another thing I have to beat its not another runner but something that tried to kill me but failed. I am not going let it beat me or stop me doing something I love.

I will finish with this long and rambling post with a shameless plug for the 10k I am running to raise money for my stroke rehabilitation service Icanho (part of livability). Please donate if you can, it may not be local to you but the work they do is essential and worth while.  Follow the link below or you can text DRSW53 £10 to 70070. Please don't feel constrained by donating £10 you can donate any amount you would like, obviously the greater the amount the more use it can be put to.

https://www.justgiving.com/fundraising/DavidSwalesIcanho

Tuesday, 28 March 2017

Rehabilitation - Icanho

In my last post I said I would do a post about the rehabilitation I have undertaken and what it has achieved. 

Fairly soon after my stroke it was suggested that I wold benefit from attending a rehabilitation service in Stowmarket. It was called Icanho and specialised in brain injury rehabilitation and this includes stroke. It was interesting that all the people involved in my stroke care recommended Icanho including a Neuropsychologist, my stroke consultant and my GP. Each of these people wrote referring me to Icanho. 

I had to wait until 6 months had passed before they would see me. This was not a waiting list but they recommend that this amount of time passes so that things are fairly steady. Acceptance onto the programme was not automatic and this was quite concerning. I did think that they may believe that I was too well for them to help me. After all I could do a job at a certain level but I just couldn't do my job. I had spent many years training and gaining experience in my chosen field of finance, more specifically 24 years working at a senior level in NHS organisations.  I am not prepared to give up all that effort to spend the latter part of my working life in a job that although capable of doing I didn't find as rewarding.  Therefore getting into Icanho was very important.

The process of getting into Icanho involved a number of assessment sessions including Speech and Language Therapy, Occupational Therapy, Psychology and Social Work. I found these very taxing and slept quite a lot afterwards. I even fell asleep in the car on the way home which is very unusual.

Stephanie and I were invited back to hear the result of the assessment. I think we were both concerned about the outcome. If they didn't accept me I had nothing to fall back on, there were no other options, no other services that were appropriate. It was a massive relief when they said that they would offer me a programme of care. I think that they were surprised that we had any doubts about being accepted. However, when you have so few options you end up fearing the worst no matter how unlikely. 

I was initially offered a six month programme that focused on Speech and Language Therapy, Occupational Therapy and Counselling. Physiotherapy was added at a later day when they found I had a minor balance issue, another impact of my stroke.

It's hard to understand how tiring rehabilitation is for a stroke survivor. One of the consequences of the cognitive difficulties is that I struggle with neurofatigue.  It is not simply being tired, it is totally debilitating beyond anything a non brain injured person can really understand. I can end up being incoherent, making absolutely no sense at all. I would not complete words, sentences or get the words all mixed up. My Yoda impersonation would be in full flow. I might do silly things without realising it, although I have not hurt myself badly, there have been some close calls including putting my hand on a hot plate to see if it was on and cutting my forehead with a kitchen knife.

Rehabilitation is not an easy option and you have to work hard to get the best out of it. The one thing that has always been in my favour is my desire to recover and return fully to work. This determination has always been there and has never wavered.

The staff at Icanho are truly exceptional, I have always felt very comfortable with all the staff there, including the office staff who have always been welcoming and helpful. The clinical staff are wonderful and they have made a massive difference.

Speech and Language Therapy
I was told by the clinicians that I should not have a problem with speaking given the location of the stroke. However, when I started with Icanho I had aphasia and they were clear that they see many people with speech problems when these would not be expected. This was a relief to hear as up to that point I didn't understand why speaking was a problem. The improvement in my speech has been the most dramatic. It is still an issue but i have learned that I don't always have to find the perfect word that there are many words that are just as good. There is definitely a psychological element to my aphasia as when I am in a more pressured or busy environment it gets worse. I am not sure whether this aspect will ever change but I will continue to work at it.

Occupational Therapy
This is the biggest element of my treatment programme and is specifically targeted at getting me back to work. It was clear fairly quickly that the main aspect of my cognitive problems was attention ie the ability to concentrate on something. To do this, the brain needs to decide what to focus on and what to ignore.  Sometimes when I focus on something, other things catch my attention despite my best efforts to ignore it. The distraction could be a noise, something I see or even a thought. This sounds simple to overcome but despite trying as hard as I can it still happens all the time. As part of this rehab I have had to develop strategies for dealing with even quite simple tasks such as making a cup of coffee, cleaning the aquarium taking my tablets. Even so I regularly have problem completing these tasks. 

Counselling
I have described in earlier blog entries about my struggling with depression. It is so common after stroke and yet as with most mental health problems it is the most neglected. Having counselling has helped considerably in coming to terms with my stroke. There are many things I could say about what I have learned such as the stroke was not just my fault alone. Up to this point I blamed myself entirely for what happened to me. If I had not pushed myself so hard at work or had asked for help. These were all things that made me blame myself. Counselling made me realise that there were so many other things that were contributors to my stroke that it was simply not right to blame myself.

Physiotherapy
Before I came to Icanho I didn't realise that I had a balance issue. While there I had an physio assessment and it showed that balance was a minor issue. I was given a range of balance exercises including standing on one leg with your eyes shut. You should try it its harder than it sounds.

I am not sure how much I can thank Icanho and there support and treatment. I am trying to thank them a bit by running a 10k to raise funds for them. If you want to donate please follow the link below.
https://www.justgiving.com/fundraising/DavidSwalesIcanho




Saturday, 11 February 2017

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.

Thursday, 29 December 2016

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!!