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Kevin B.

May 20, 2015

I am ... A Survivor

I am a stroke survivor and I would like to tell my story. Before I had my stroke, and for a short period after, I was in the belief that a full recovery was never possible for any stroke victim, and that they would have to live a life always showing some form of disablement. Now I know that this is not true.

I had my stroke just a little over 9 months ago now, August the 10th, 2014. A date I will never forget. I was, what you would consider a reasonably fit 54 year old, not excessively over weight, nor was I a big drinker, and always a reasonably healthy eater.  I had been a smoker but never heavy and a very long time ago now. 23 years ago to be exact. But never in my wildest dreams did I think I was a candidate for a stroke.

Leading up to my stroke, about 2 years prior I had 2 TIA’s, where both times  I had lost the ability to form my words properly, but both times for only a short amount of time. The first one happened at my work, where I found myself having trouble to talk, like I was slurring.  I got a work colleague to take me in to the doctors and in the 10 minutes it took to get there, I was fine again. After a series of tests, they then blamed it onto the fact that I had been pretty slack taking my blood pressure tablets. By the way, I have high blood pressure. My eventual stroke was a clot, and not a bleed.

The second one happened about 6 months after my first, but this time I was at home and it was in the evening.  I noticed myself having difficulty again forming my words. I immediately monitored my own blood pressure, and it was fine. I then got my wife to take me to the hospital, where they sent me off to a major hospital, about 45 minutes away to do some more tests.  Again I was fine, but after about 20 minutes this time, a little longer than the previous.  After a series of tests, they then sent me home in the early hours of the morning, and the only medication they prescribed for me was a 100mg aspron to go with my blood pressure tablet daily.

Well about 12 months later, I had my biggy. I was laying in bed on a Sunday morning and the room started spinning around like I was really drunk. The only problem was that it would have been maybe about a week since I had my last drink. I was even nauseous, like I had really laid one on. It was so close to feeling like being drunk that it wasn’t funny, but without the feel good part that alcohol usually gives you. I then woke my wife up and tried to explain to her what was happening, but by this time I was slurring my speech badly. By the time I got out of bed, I couldn’t stand, let alone dress myself. My wife realizing the seriousness of it all, quickly helped me dress, and then she had to help me to the car as well, and then to the hospital. By now I couldn’t stand or walk without assistance. The hospital was only 2 minutes away from home but in that time, I had to get my wife to pull over 3 times because I thought I was going to be sick. If it had been a Friday or Saturday night, the hospital staff would have thought it was just another dunk at their doorstep, but this was a Sunday morning at 8 o’clock. Their initial thought was that I had contacted meningitis or something like that, but after seeing my history of TIA’s, they quickly changed their thought process. For some reason which I cannot work out why to this very day, they administered me with morphine before they shipped me off by ambulance to same major hospital 45 minutes down the road. When I arrived there, the medical staff tried to diagnose exactly what type of stroke I had had, and where it had occurred in my brain, but it was very difficult for them to distinguish between the effects that the stroke had on me and what effect that the morphine was having on me. I was then admitted to the Intensive Care Unit where they did more tests over the next 2 days. Before receiving the results of the MRI or CT scan, the medical staff had already determined where they believed the damage had occurred, the right hand side of my cerebellum. This had caused me to lose all my fine motor movements but on that side only, as the crossover doesn’t happen until after the cerebellum.  They came to this conclusion after a series of function tests. Still by this point of time I had not lost any strength on either side of my body or showed any signs of droop, nor had I at any stage lost consciousness. Every now and again they would ask me a set of questions such as if I knew where I was and what day it was, and each time I would get all the questions right. I just couldn’t stand or walk, and I still had trouble talking. They picked up on the fact that I couldn’t touch the outstretched finger of the doctor with my right index finger and then touch my nose with the same finger nor could I touch my index fingers together without looking, but what really clinched the deal was the fact that I couldn’t run my right hand heel up my left hand shin.

After 2 days in Intensive Care I was then transferred to the general ward where I spent the next couple of days before going into rehab. In total I spent just a little less than 3 weeks in hospital. All those little things that I had taken for granted for all those years had now all become tasks. Things like eating; cleaning my teeth, brushing my hair, had now all become very difficult for me. After one of my examinations, they asked me to sign my name and I wasn’t able to so I had to put a cross down instead.  By now I had started to realize how my life was going to change. Or that is what I thought, in the short term anyway. After not being able to sign my name, I then made a point of filling out my meal order each morning while in hospital, writing my name and room number on the top. Most people would have no idea how difficult this simple task was for me, but I persevered. When I got home from hospital, each day I would write down the alphabet in both upper case and lower case, and then write the numbers from 1 to 10. I would also write a little spiel about how I was going, and even attempt to draw something like a simple picture of a house. My problem was not remembering how to write but, not being able to form the letters properly with the pencil. I had trouble running my hand across the page in a straight line. When I used my laptop while I was in hospital I would type the letter with my right index finger and then touch my nose with that same finger before I typed the next letter. I’m right handed and it would have been all so easy to have started using my left hand for a lot of these tasks, but I really made a point to persevering with my right side. I had started my rehab campaign by myself in hospital.  I would get up in the early hours of the morning, around 3 am, and go find myself a nice quite dark corridor (somewhere with carpet on the floor and hand rails up the walls preferably) and then I would do all my physio work.  (The grape vine comes to mind) As you can imagine, hospitals are not real nice places to be in especially in those early hours of the morning but I didn’t care. I just wanted to get better, and be normal again.

After spending nearly 3 weeks in hospital, I was then allowed to go home and by then I did not need the aid of a walking frame, nor did I need hand rails around the toilet and shower, or anywhere else around the house.  I could walk and stand unaided, but I still could not for the life of me, stand just on my right foot. My wife assisted me for the first couple of weeks at home, and once she believed I was capable to care for myself, she then went back to work. From then on I took up all the household duties such as the washing, cooking, and cleaning. All this I considered was good therapy for me.  I had never previously ever had to fold anything as much as a shirt before, but now I found myself doing this and more daily. Pegging out the washing was a real task at first, but it too got easier with everyday.  I spent the next 8 weeks, seeing a physiotherapist twice weelyk and we just hammered my balance. Before my stroke I had impeccable balance. I use to slalom and barefoot water ski to quite a high standard, so going from that to absolutely have no balance was very hard for me to accept.  I would walk the half a kilometre or so to the physio’s where I would spend an hour, and would then walk 1 to 2 kilometres around the block and to home. After being home for a couple of weeks, I wondered how I would go riding a push bike so I hopped onto my son’s bike and managed to ride it down the driveway without incident, so my whole thought process had changed. It wasn’t a balance problem I had, but the fact I had lost coordination on one side which caused a balance problem. After about a month from being home from hospital, I went out and bought a mountain bike, and I started riding a 15 kilometre route daily, sticking to only cycle ways at first. After a while I started doing longer rides, and through the bush. By the New Year I was doing 25 to 30 kilometre rides through the bush 2 or 3 times a week, and at reasonable pace. By this stage it was nothing for me to do 70 kilometre rides if I stuck just to cycle ways.

It has now been 9 months since my stroke and I can now see quite a bit of light at the end of the tunnel.  I’m now walking and jogging regularly, riding my bike when I can, and I am even now back playing golf again. My golf is not quite there yet, but like everything else, it is still improving. I can see now that a full recovery would be a real possibility. It maybe not yet, and it may not be for still some time, but it is possible, and I do strongly believe that if I hadn’t persevered as much as I did, the improvement may have taken considerably much longer than what it did, and maybe never to the extent that I have witnessed in myself. It really makes you realize exactly how powerful the brain is. It is truly an amazing piece of our anatomy.

Guestbook

Hi Kevin

 

I live in South Africa , my ex husband has had a stroke he is left handed and his left side is effected.

He is out of hospital due to no medical aid and now in a frail care facility.

I believe that he needs a lot of rehad and stimulation which he is not getting right now and nobody actually want to tell him where he is at . A OT is now coming once a week the same one who helped him in hospital and a Physio twice a week, male , he seems to respond better to them.

He does not walk cannot feed clothe bath or do his abultions without assistance and in nappies which I am sure is very degrading for him . With time we hope it will improve . However now all he does is cry all of the time which I read up is a part of the stroke . 

We are not even sure if he can hear on his left side nor see out of the left eye. Not much information from drs either.

But Kevin your story has given me hope and I am going to document for him what has happened to him ,  progress since the stroke .

what ever advise and guidance you can give much apprecaited.

 

Kind Regards

 

Lena Porter

Hi Lena.

I’m glad it has helped you in some way. In the 3 weeks I spent in hospital I lost 11 kilos, and that wasn’t through exercise. That was because of depression, and yes depression can be one of the hidden side effects of stroke. I really didn’t start feeling good in myself until I could see that there was some hope of improvement. There was also a book that I read once I was home called “The Brain That Changes Itself “written by Norman Doidge. This book also was a great help to me, to give me hope that a full recovery was possible. If your husband can’t read it yet, I strongly recommend for you to have a read of it yourself. It will help you to understand what he maybe through and it might also give you some ideas what he may need to assist in his recovery.

When people see people who have had strokes, all they see is the physical side of the problem but never see what is going on inside their head. I probably could have lived with some kind of physical disadvantage but what I couldn’t live with was what was going on in side of my head. I never felt as if I was all there, like I was in another world all the time.  I could carry on a conversation with someone but it just felt like you were not the one talking. A really weird feeling!  It took me ages to get the confidence to go out in public, and if I did I just followed my wife around like a pet. Now after nearly 10 months, I can say that I feel so close to being back to my old self again. But I often wonder if it is because I am getting better, or if I’m just getting use to being different. Either way, it is still the same result?  

When I left hospital I had no idea of the extent of my recovery as well. Nobody would tell me. I really don’t think the Doctors knew themselves, and if they did tell you that there was some hope of a full recovery, a lot of people will sit back and wait for it to happen. And then it will never happen. You have to go out and chase it yourself. I really think it depends a lot on the individual.  

After all that, thankfully I have managed to have kept those 11 kilos off but this time through exercise and eating well. And also the fact that I hardly drink alcohol any more may also kelp account for some of the kilos.

I wish you and your husband the best of luck with his recovery, and never give up hope. One thing the book tells you is that the brain never stops learning until the day you die. Thats when any improvement will stop.

Kevin

Lena,

Hello! I'm looking at your entry date, and wondering how your husband is, after approximately 3 weeks since you entered your post? I am a nurse, my husband is a physician. My husband experienced his stroke August 24, 2014. His left side is also affected. Can your husband use his left side at all? (His left arm and left leg?). Fortunately, my husband's stroke was not too big, but did take time and effort. As you can imagine, being on the other side of healthcare routinely, made it very challenging for him to be interested in some forms of physical or occupational therapy. That's when I decided to make things a bit more interesting for him, like getting him involved with video games, like bowling, or even boxing?! I also found an app called, "Dexteria", which was very useful for fine motor skills. It's never too late to work on recovery. Recovery to strokes can still take place, after a 2-year period. The emotional part is normal for stroke patients, but using anti-depressants can help. If he is not getting the therapy he needs, then attempt to set up your own routine for him. When I saw that counting dried beans, or picking up coins was humiliating for my husband, is when I had to be creative w/ efforts that would accomplish the same outcome-- just make it more attractive, & something that my husband would actually DO?! Playing video games was very easy, & fun, using a Wii game, where his entire left upper extremity was being used. There were times that he thought he had only been playing for 15 minutes, but it was really more like over an hour?! Be creative! It has now been 10 months for my husband, and he has returned to work! Our new 'normal' has changed somewhat, but realizing he is only 10 months out, & still has over a year to plateau before hitting that 24 month time period, things are still evolving! Your husband is fortunate to have you as his support! Sometimes being the constant cheerleader is exhausting, but as you see improvement, this will be rewarding for both you, and him, as well! Take care of yourself! Kevin.... I'm proud of your accomplishments. You sound like a motivated person. Your continued efforts are surely paying off! Good luck to you both! 

 

Hi Kevin,
I'm Luky, male, 48,Indonesian. I'm speechless after reading your post. I envy you much. I have been a survivor since August 29, 2014-the day I would never forget in my life. The first time I was taken to hospital they did nothing but sending me to ER n oxygen. No other proper action to prevent my stroke getting worse while in fact I still could move my right hand n leg though it was weak n a bit difficult. But let the bygones be bygones. I'm now feel recharged after reading your post. Really motivating. Had I read earlier.... I will start rescheduling my recovery exercises and keep your word-preserverance-ib mind. If you don't mind, Kevin, pls lemme know the details of the book you mentioned in your post. Who knows it's available in Indonesia.
Hope you don't mind if I dig more details on the exercises you do.

Warm regards,
Luky

Hi Luky.

One thing I have learned from after having my stroke is that we all have our different problems. Mine was mainly my balance and fine motor movements on my right hand side, as well losing some perception of distance and awareness, which I found mountain bike riding helped immensely to regain back some of these loses. My speech was also affected slightly but just by concentrating on each word as I spoke and talking slower, I seem to have overcome this problem now.

First thing, the book was called “The Brain That Changes Itself “written by Norman Doidge. You may even find it on the internet? As for my exercises, they were mainly targeting at my balance, with a little bit of upper and lower body strengthening. My main exercise was a simple straight line marked on the floor about 10 meters long. I would walk toe on heel, forward and then backwards, looking straight ahead at first.  Then I would do it keeping my head perfectly still, and looking around with my eyes, first up then down, and then to the left and then to the right. I would then do the same but this time keeping my eyes focused on a spot directly in front of me, and then moving my head up and then down, and then to the left and then the right. Next step was to do it on a length of high density foam about 150mm wide and 1500mm long. Even for someone with good balance, this was a real test. It was my right side that was affected, so I would then try to balance just on that one foot for as long as I could. Once this become too easy, I would then try to balance on the same piece of high density foam, and then eventually on a small trampoline. I also spent some time on a balance ball, with a couple of 4 kilo dumbbells, doing various exercises that you probably would find on the net. This not only helped my balance but also my core muscles with some upper and lower body strengthening. I spent 8 weeks seeing a physiotherapist twice a week for an hour at a time, but I also spent time at home dong the same routines. I was simply amazed what sort of workout you could do with such simple equipment. Now I really can’t fault my balance. I think you have to aim higher than what you are happy with, then you will achieve what you want. It’s now nearly 13 months since I had my stroke and apart from some bike riding, walking and a bit of jogging, my rehab is just normal every day things. Don’t get me wrong. Things are still a little hard, and I still get frustrated now and again with being clumsy at times but as every day goes by, things still are getting easier. When you find something that is a little difficult to do, you just have to persevere with it, and never give in. It will get easier.

I hope this has answered some of your questions and helps you in some way, and I wish you all the best with your recovery.

Regards

Kevin

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