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Old 07-15-2012, 01:20 AM   #1
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akira100 HB User
Smile My stroke's 20th birthday

This is my first post on this board and I'm just here to say hello. I had a stroke from an avm bleed in September 1992 when I was thirty-seven. A while after the event I wrote about the night it happened to explain to friends and those who didn't understand what I had gone through what it was like.

This is what I wrote...

I needed to pee.
I had woken up in the dark and I needed to pee. There was nothing unusual about this; I often had a cup of tea or warm milk late in the evening and when I did it would hit my bladder at about three in the morning. I didn't bother to switch on the light, the loo was en suite and I just needed to feel my way to the opposite side of the room and I would soon find relief. I was living in a self-contained attic flat in my mother's house, the ceiling was low and the stairs were narrow, so I had no bed, just a mattress on the floor. I started to attempt to roll over off bed - and couldn't move.
I wasn't worried, I thought I must have been sleeping particularly heavily on my right side and all the muscles had, as they say, gone to sleep. So I lay there for a few moments waiting for the pins and needles to start tickling which would mean that sensation was returning.
Nothing happened.
It was only my right arm and leg I couldn't move, my left side seemed unaffected. I reached up and switched on the light with my fully-operative left hand and lay there trying to work out what had happened. For three years I had been experiencing epileptic fits, fits which caused the muscles in my right leg and arm to seizure. After x-rays and cat scans and mri's and angiograms it was concluded that some of the blood vessels supplying the left lobe of my brain were unnaturally tangled and causing electrical impulses to jump erratically
around the motor control section for my right side. Like when you put a current through a frog's leg and watch it jerk about. I was that frog.
It didn't take much thought to see that this apparent disappearance of all the muscles on my right side was somehow linked to my epilepsy.
After a while it became clear that nothing was going to change and this was becoming serious. What could I do? There was no phone and I was alone in the room. My mother's room was directly below mine so I started thumping on the floor with my working fist and shouting out for her. And I shouted and thumped and thumped and shouted. When I thought
I was stuck there for the whole night with no idea what my body had done to me, a sleepy voice came up the stairs.
"What on earth's the matter?"
"Um, I have a bit of a problem...."
I found I was trying to make light of the situation and get her to call a doctor at the same time. It's odd how you don't want to scare your mother even when you are on the verge of panic yourself. When I finally convinced her that waiting until the morning and "seeing if it was better" was not an option, she went off to call our doctor.
The rest of the night went past in a blur of increasing activity. The doctor came, asked questions, did various physical tests and looked worried. He called for an ambulance. The ambulance arrived. I was strapped into a little chair and carried down two flights of narrow stairs. I managed to joke that the next time I did this sort of thing I'd make sure I was on the ground floor. The ambulance took me to a hospital ward where I was helped into a bed, surrounded by screens and tapped, hummed over and questioned by a couple of tired doctors.
At about seven in the morning, as it was starting to get light, the nurses' shift was changing and breakfast was being served to the other patients, one of the doctors returned to tell me I had had a stroke.
And that, as far as he was concerned, was that. He went off duty and walked, on his two completely healthy legs, home to his family.
And so the rest of my life began....


I just thought I would share...

Last edited by akira100; 07-15-2012 at 02:43 AM.

 
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Old 07-17-2012, 02:58 PM   #2
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Re: My stroke's 20th birthday

I am so glad you said hello.
So so many times we hear the same story about medical professionals giving the brush off. I know they are over worked and under paid supposidly but really do we not deserve better than this. Where is the compasion?
If I understood correctly its been 20 years. I was very excited to read that heading on your post. Could you please let us know how you are now and what your journey was like. I would love to hear more about your story and i know others would too. So much courage we can pull from reading another persons experience. When we read about courage it gives us courage. When we read about hope it gives us hope.
Thank you so much for posting and please continue doing so.
God Bless Mulchie

 
Old 07-18-2012, 03:07 AM   #3
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akira100 HB User
Re: My stroke's 20th birthday

Basic story...

In 1989 I was diagnosed with an arteriovenous malformation on my left lobe. Then I experienced a subarachnoid hemorrhage in 1992. I was in hospital for three months learning how to walk and write again, finally recovering full strength - but I was tiring easily and there was still the pesky avm to get sorted out. So I had a whole load of operations in the next five or six years including five embolisations and gamma ray treatment (Stereo-tactic radiotherapy treatment I think it's called). Unfortunately one of the embolisations resulted in permanant weakness to my right arm and leg. (I now use a mobility scooter when I'm out and staircases are still my nemesis).
After all this I eventually felt well enough to go back to work - but I overdid things and precipitated another bleed which put me back in bed. This time I was there for over eighteen months, so a craniotomy was decided on. This was in 1999 and as I said to my surgeons afterwards, "Thank you. You've given me my life back." I was much better but still very weak for a long, long time.

Depite the improvement this was a really low time. Both my parents died in fairly quick succession and all my friends seem to move away to other parts of the country, leaving me to mope around on my own, raging at whatever force from above had picked me out for special treatment.
But (happy ending!) since then my health has steadily improved - except for the right-side weakness, of course, and he headaches and nausea have gone onto the backburner and only pop up and say hello when I overdo things. After living with this fifteen years, staying in on my own watching tv and reading tatty novels, I decided enough was enough. I now had the confidence to face the real world again.

I plucked up all my courage and I moved to a small Cornish town on the coast where I knew no-one; I joined clubs to help meet people, and I started an Open University degree course in Humanities....and then I met someone special. We've been married now for two years and we live in an apartment looking out over a beautiful marina; we have a mad little dog; and I have become part of an huge extended family of in-laws, step-sons and daughters and four gorgeous granddaughters.

This may sound a bit cliche'ed and patronising to those of you going through hard times, but this is the best time of my life and, as I approach the age of sixty, I look back and now understand how lucky I have been Things could have been a hell of a lot worse - and if things had been different it would have meant that I wouldn't have met the love of my life.

Liz, thank you for everything.

 
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Old 07-18-2012, 07:11 AM   #4
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Re: My stroke's 20th birthday

“h Thank you for that. I needed to read that at a time when my life seems so unimportant. Thanks again for that beautiful post. You deserve all the happiness in the world. I cried while reading it because we all have that hope in our hearts that we were saved for a reason and that reason being God has a better plan for our life. You are proof of that. How wonderful.
Thank you again
God Bless Mulchie

 
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