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Greetings - Leon


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Greetings,

My name is Leon I am from South Coast Central and had my SAH Stroke on the 7th April 1990 at the age of 27.

I have a story that I have written for the Guardian but wish to duplicate it here so anyone know where it is best suited to be posted

Thank You

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Welcome to BTG...good to know there is life after SAH......I wasn't told how long I would live etc..thought I would die soon..lol

Thank goodness for BTG and the people on here ....Nice to know we are not alone ...

Now Get that story on here..lol

Regards

WinB143 x

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Thought I would share my story with you that has been sent to Sonia Poulton at Sky and my local news paper reporter Priya Mistry at there request.

Firstly I have taken the decision to email this story to both of you as I feel it is one that should go not only local but national too, please feel free to use it however you wish whether that be tabloid publication or internet so long as you can the message out that is fine with me.

I was born in June 1963 and adopted from birth to a Royal Marine and His Wife now very much my late Dad and Mum hence the reason I was brought up in the wonderful City of Portsmouth, however during my childhood I suffered with Epileptic Fits and the cause was never found until April of 1990 when I had an SAH Stroke at just 27 yrs old.

I was a main dealership valeter then and was asked to do overtime at the weekend to paint the mechanics workshop floor so Saturday 7th April came and was busy painting away when we run out of paint so got some petty cash off the showroom manager and set off in the van to GA DAYS TRADE CENTRE for paint. Whilst in the store I felt all light-headed, had a thunderclap headache, vomited and passed out none of this from the point of passing out I can remember it is an account of what my wife tells me via the store assistant at the time.

I was taken by ambulance to the QA Hospital in Cosham where I had a few tests and monitored until the Monday afternoon and then sent home as nothing was found they put it down to another fit. At home on the Tuesday night I took a turn for the worse and passed out again so another ambulance was called and took me to the QA Hospital again this time they thought I had meningitis so transferred me to the diseases dept at St Mary's Hospital in the City there the next day they gave me a lumber puncture in my spine to check the fluid this was clear of meningitis but traces of blood cells was found so was sent back to QA Hospital for an MRI Scan this scan was very much bingo as an aneurysm of the middle cerebral artery was found which had burst and thus causing all the issues.

On the Friday I was again transferred this time to the Wessex Neurological Centre at Southampton University Hospital for an operation to clip the bleed remember this was 1990 so no coiling was available as that procedure of angioplasty did not arrive here in the UK until early 1992 so my only two options were die or a 10 hour operation to open my skull and clip the bleed, however I was told by the Consultant the operation would cause a stroke and would be left with disability down my right-side and being my natural side recovery would be a longer process.

The operation took 10hrs plus I was put into induced coma for 8 weeks this was to not only help reduce the swelling but also to limit brain activity to help with initial trauma, after being brought out of the coma I was monitored in ICU for 4 weeks before being put on a regular ward for a further 6 weeks and where I started the physiotherapy program to get me back on my feet. This went quite well although I got confused with steps and staircases in the hospital and would quite often trip due to putting wrong foot forward.

It is a very surreal experience having gone from a very fit 27 yr old to going back in development time and having to start over with damaged frontal and temporal lobes due to blood starvation even the simplest tasks like doing up buttons, tying shoe laces or holding a cup level was so hard and I did feel a fool because you so much want to do it but just do not have the ability or motivation to do so.

I was transferred back to St Mary's Hospital for a further 6 weeks rehabilitation before being given the all clear to be discharged with an appointment in 6 mths time for a follow up at Southampton University Hospital. at this point I am sure you understand my love of this great National Health Service we once had indeed it served it's purpose very well for the majority of it's patients including me and was the best health service in the world for which it was world renowned.

The first 6 mths at home were the worst everything seemed to be an uphill struggle and did make me very cross because I was a different person to the one that used to live here, however I was not one to give in so easily and had my mind set to return to work that my employer so kindly kept vacant for me by taking on temps but I knew I could not return until at least the consultant at Southampton University Hospital had seen me besides I knew my employer would not want me back until I was fit enough to do so he was that nice guy which was unusual in the motor trade he was so nice in fact he paid me full wages all this time I was off work so understandably was keen to return and see all my mates I worked with.

I used the time at home to study the driving exam as I would have to take this test again having had my licence revoked this I retook in June 1991 and passed and was very pleased about as I had a certain amount of freedom given back to me I was given the all clear to return to work in August 1991 some 15 mths after the operation I was lucky in that I was young at the time of the bleed so was able to make a faster recovery than someone older it is at the time did not accrue to me that stroke was possible at my age probably because I was living the life of a young adult out with mates and generally doing the things a 27 yr old would be doing.

Still sometimes life sucks and you just have to pick up the pieces and start over, however in a way I was glad that it happened to me, some people find that strange to understand but you see I have been given a second chance at life and see things very differently and always strive to help people the best I can you could say my ideal of the big society.

I managed to stay in work until September 2007 when redundancy struck many due to the recession, this came a shock more so to me I guess because of my disabilities and going on interview after interview for any job that was going it became a very laborious task being knocked back, I do not blame the employers because I would be the same in there shoes thinking of the businesses and maximum output from all staff, however I do feel that the government has failed me because they should be doing more to educate all businesses on the merits of employing the disabled and equality.

During my time in employment I never claimed any disability benefits despite having entitlement this was for two reasons firstly it just did not cross my mind as I was so busy working and by the time I got home was so tired and fatigued I just wanted to rest and sleep ready for the next day. I also took this decision to claim no benefits because I was earning well enough to live and sustain my family and wrongly thought that the Government would look after me if the time should ever come as I had paid into the taxation and NI system for the last 17 years.

No Job came my way due to not only the limited number of jobs available, indeed there used to be at least 15 pages of jobs in the news and I am sure Priya can back me on that one, but now there are just 4 maybe 5 pages and how many of those are real jobs is anyone's guess. It was also hard and remains the case today because of my physical and mental disabilities this are varied from skeletal issues like spasticity down my right-side, drop foot, dysfunctional hand pain in my back due to curvature of my spine, pain in my hip, pain in the metacarpals of my hand, limited joint movements, and hyper-extension of fingers and toes all these are caused from the stroke but are mainly due to the left-side of my body doing the extra work in carrying my right-side.

I also have mental issues due to the damage done to the frontal and temporal lobes of my brain caused from the bleed and thus blood starvation, yes other parts of my brain have taken over some of those roles but it still does not have the same functionality and the rate at which I do things are much slower. the frontal lobe takes care of reasoning, planning, parts of speech, movement, emotions, and problem solving and the temporal lobe takes care of perception and recognition of auditory stimuli, memory, and speech so these are affected. It is a well known fact in stroke patients that a a third will die a third will make a good recovery and I third will be left with varying disabilities that is me I have varying disabilities.

It is a shame that not enough attention is given to long term stroke survivors because they still have issues and there brain function is not monitored I am sure this will lead to bigger problems down the road like dementia.

I am now at a turning point and very worried about what the future holds and specially with our present Government who peddle lies to the press about being work shy or there favourite term scroungers this is deeply depressing as it is far from the truth as the majority of the disabled do want to work but they do not want the pressure the government is so keen to push on them.

Last Friday I had the dreaded ESA50 form arrive from ATOS healthcare for the WCA this I am bricking it and is constantly on my mind I know I will fail because it takes no account of mental issues and for me the physical descriptors are very poor so if I lose this as well as the cuts to tax credits I will be up the river without a paddle. I cannot even get the disability element of tax credits because although it says you have to be at a disadvantage in getting a job you also have to be in at least part time employment how does that work out because it does not to me.

I am right now really scared I took on a mortgage under Thatcher’s RTB Scheme and always paid it never claimed mortgage interest relief, we care for my wife's mum at home who is also disabled and thus saved the Government a fortune in care costs over many years but now I feel I have been dumped and wish that I had now claimed mortgage relief and all the disability benefits I was entitled too from April 1990 instead of leaving it until October 2007.

The Fact I had a stroke does not change though I am glad I had it because I see what this Government and many Citizens do not but I do hope things change for the better and our Government starts treating us disabled with the dignity we so deserve because it was not a life choice we had to accept it with we liked it or not.

The Government has ratified the UN Convention of Disabled Persons I live in hope that they will eventually uphold that Convention because right now they are not.

Sorry for the long email but I had a lot to get of my chest all I ask that you use as little or as much as possible to help me get the message out there in the domain.

Kindest Regards

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Hi Leon, you are just up the road from me, I live not far from QA

What a story you have & how great are Wessex for saving our lives (there area few of us treated there)

If you get your medical & you fail do appeal, make a not of the things that you feel have not been taken into account. I had to appeal last year & was terrified too but was gob smacked when the appeal went in my favour!! Unfortunately now I have had my ESA stopped as you can only have contribution based for 12 months & I'm almost at the 2 year mark in July so mine stops at the end of this month. My hubby works a nornal week so we can't get income based ESA so the only 2 choices are JSA for 6 months or at my next medical to try for the support group.

I am not going to sign on unless we can't manage as we are, things will be very tight but I don't think I am capabe of much meaningful work. I am ok for maybe 2-3 hours at the most (depending on what is happening around me to be honest) before I hit that wall of fatigue so I can't see me even being able to do a 4 hour stint.

I'll be thinking of you & crossing everything for you medical, worrying times

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Welcome to BTG Leon!

Thanks for sharing your story here. It is so frustrating for so many, that we must fight to get the help needed! I'm in the US and it's pretty much the same story for folks in our situations. Will keep my fingers crossed for you that you get the proper benefits you deserve!!!

Hope to hear more from you.

Carolyn

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