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Where do I fit in here?


Johnnie M

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Hi all! A relative newbie here; attracted to the site because I have quadrantanopia following an ischaemic stroke with haemorraghic transformation in the left occipital lobe. My driving licence has been revoked by the DVLA. Some of the post below is copied from another part of the site in which I responded to someone else's question so apologies if you've seen it before! I am just wondering where I fit in on this site. I have no idea what an SAH is and whether that correlates with what happened to me? Am I relevant here? Have others experienced what I experienced? I really don't want to waste the precious time of others but I think that I have had an experience that many others would benefit from knowing about.

 

I am 56 years old and had no idea I had, or was having, a stroke. With strokes to the back of the head (I am told by a consultant) there are none of the signs that television adverts tell us to look out for in others. I was on the way to work and I had a headache at the top of my neck and back of my head, that is all. I am not prone to headaches. When I arrived at work, after a week off driving the mountains of the French Alps, I started typing an email and found that part of my right vision was missing.

 

I thought it might have been a cricked vertebra in my neck pinching a nerve, or a detached retina. I went first to my Chiropractor. It wasn't a pinched nerve in the neck. I then took myself off to Moorfields eye hospital. The consultant said, "it's not your eyes so it must be neurological".  It was then that the 'S' word was first mentioned! They put me in a taxi to University College Hospital and I stayed for 24 hours being prodded and poked and thoroughly checked out. CT scan, MRI scan, Physio coordination checks etc etc. The staff on the stroke unit were a marvel.

 

I dared not tell my wife why I was in hospital because when a stroke is mentioned the immediate image that springs to mind is a massive loss of movement, not being able to walk or lift an arm, collapsed face and dribbling! I mean that in a tongue in cheek way but it is true; people always think the worst until they see you. My wife is the sort of person who would have panicked and rushed to see me when really there was no point in her making a massive journey to see me looking exactly as I was when I left first thing that morning.

 

I was back at work a week later, although I imposed fewer working hours on myself as, luckily, I own my own business with four other guys and have very supportive partners and staff. Six months later I am back to where I was work-wise. Still trying not to stress too much though and still dreaming of getting back behind the wheel and joining my mates on the annual driving trip to Europe in 2018!

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Hi Johnnie M

 

Someone on here wrote about this a while back, I remember looking it up  and to put it in my terms a quadrant of your eye  loses it's site is that correct  ?

 

See no Docs on here just people who have had this and other things similar happen to them.  When I heard I had a stroke I thought "Uh Oh"  and to be honest I was afraid as although I am an old dear I didn't think it was my time.  You have done well,  back so early.

 

So no stress and no worrying I was told by my Surgeon. 

Keep calm and others will reply,  as my answer to all ills is to sing !!

 

Take care and well done  on recovery

 

Winb143 xxxx Talk about slow I am,  you have spoken to others ..sorry Arghhh = me screaming lol

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Thanks for the response Winb, you seem to have a fantastic attitude to the S word! I sing too! How mad is that?! I am a big musical theatre fan. I always have been ever since I saw Mary Poppins in the 60's I think! Luckily my daughter is now at the top of the musical theatre game and is appearing in Carousel at the London Coliseum with Alfie Boe and Katherine Jenkins! The trouble is that the songs in musicals always become earworms to me and often keep me awake at night. Whatever you do be careful if you ever go to see Half a Sixpence! It's amazing but the songs get stuck in your head! Hehe.

 

All the very best to you.

 

JM

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I make my own words up Johnnie it is easier,

 

I was singing an Anne Murray song  it goes like this  ..Hit it Win

 

I cried a tear,  you wiped it dry.  Then I add I stuck a needle in your eye ha ha told you I was daft as a brush  xx

 

My brothers grand daughter was in the Theatre playing in the Profumo affair play and my brother was worried about her part lol.  He went to see it though xx

Just remember Johnnie   Still, half a sixpence Is better than half a penny Is better than half a farthing Is better than none.   

 

I sing pub songs as my family were always in them lol  xxx  Have a good Day xxxxx  and be well xxxxx

Win xxxx

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Meant to say,when you are okay, come in green room we leave messages in there, some are silly when written by me lol

 

But it is a good place to vent or let off steam or ask questions if needed xx

 

Take care JM

 

Win xx

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Johnnie, the great thing about this forum is you are included and welcome and just by sharing your experience you will help someone, they may never comment, choosing instead to be a guest or silent member but by letting people know what helped you regain, recover and get to where you are now whilst coping with everyday life and adjusting to living with your quadtroponia it will help them have ideas they can try and have hope.

 

In return hopefully you as a member will get encouragement from others who whilst they don't have the same condition post stroke we know what the impossibility of a new situation can feel like and how hard it is to try and keep moving past that with a song and a smile.  

 

I had my SAH 5 years ago now and whilst I would say I have adjusted to the effects of my bleed and know it's impact on me I have been left with hydrocephalus which has more of an impact on my day to day not to mention the kit I now iphave in my head. But I wear hats to protect my head from sun, wind and rain and we go on. You'll get driving again and belting out those song tunes in high altitutudes. 

 

PS ? Love the fact your daughter sings on the west end. What a marvellous job. 

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Thanks so much Daffodil for your kind comments and encouragement. I posted initially because, having read a lot of the various posts in this website, I felt that almost everyone else had been so badly affected by their 'incident' that I felt somewhat fraudulent in being here at all. I can't say that the stroke I had has really made a massive difference to my existence (except the driving thing and the realisation that there could be worse around the corner!). I shall, however, continue to contribute if my experience may help others. That's what it is all about isn't it.

 

Re your PS, yes it seems to be a marvellous job but I think most do it for the love of dance, singing and acting generally rather than to become wealthy. I had a bizarre night last night at the after party for the opening of Carousel, in which she appears with Alfie Boe, Katherine Jenkins and Nicholas Lyndhurst. There were so many acting greats there milling about and I even had a chat with Nicholas Lyndhurst, who was just lovely. I shall continue to bask in the reflected glory and skills of my daughter!

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See told you JM,

 

We are here and  even if you  do not feel so alone, or you get headache from my songs .  My job has been done ha ha  xx

 

So anyone need a song?  I'll take that as a No  !!

 

Keep Well

Win xxxx

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JM,

 

Welcome.  The members of this site are extremely helpful and caring.  They also provide sunshine, in just day to day comments, jokes, songs, games, etc.  I, too, often feel unqualified to post here, as I suffered a NASAH and have mostly fully recovered, other than some occasional headaches and some slight memory problems. 

 

I often forget how much others on this site have overcome, and how many still struggle day-to-day from the effects of their injury.  Then someone will post something that reminds me how easy I got off compared to the lot.  No matter the severity, all members on here have been so friendly and helpful that they are now a part of my life.  So no worries about the severity of the injury, you are in the club easily as much as I am, and everyone is very inviting and nice.

 

There is a whole thread about whether a NASAH or a SAH is indeed a Stroke.  I think it depends on the definition of stoke, as it is a more layman generic term than a medical one.  As I understand it at least.  I find it much easier when it comes up to tell people I had a "slight stroke" than to try to explain NASAH.

 

Prayers for your continued recovery.

 

Chris

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Hi JM, welcome to BTG,

This is a brilliant site and you really have come to the best place for help and support, we have all had different experiences in the bleed department some worse than others, what you will find is that no matter how it came to happen or what deficits we have we are a huge family of survivors, what you have experienced and the fact that you have come here to share your experience will help a lot of other people, 

 

Please don't ever feel that you could be wasting people's time, you are now a valued member of a huge new family.

 

So keep doing what you are doing, keep coming here as you will make a lot of new friends a long the way.

 

I really do wish you well with your continued recovery.

 

Love & Best Wishes

Michelle xx

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Thanks you for all your lovely and welcoming responses. I have a lovely support system at home too and my grown up children make sure that I have a smile on my face. My more remote family (mum in New Zealand and Aunt in Vancouver) feel somewhat hide bound and useless but Facetime and Skype make depicting my condition so much easier.

 

I can't imagine how people that are post-stroke, cope with telling loved ones that can't see them on a screen or face to face. So many different possible results for stroke victims. As I said, I couldn't tell my wife that I had had a stroke, even when I knew I had to stay in hospital. I mentioned it after the CT scan the following day.

 

I knew she would have been worried but when the S word is mentioned the imagination kicks in and in my case, would have made things worse for her. When I walked in the door the following afternoon looking no different from the day before, she was really quite shocked but then completely understood my reluctance to explain before I did (although she didn't really like that ploy!).

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Johnnie M,

 

You just do not want to scare family which is good on you.

 

You keep getting better and hope to see you in Green Room when you feel like it  xx

 

Keep getting better and stronger, okay we will have an off day but as long as the good outweigh the bad then we have made it..

 

Good luck

 

Win xx  

 

 

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