Update.... On Jo Dilks (user name Lesliedilks) Hi it's been a while.......

I haven't been on for a while due to my own troubles and the confusion i had trying to grasp the new site. (which by the way i have...yippee!!! )

Also, i must say a big thank you to all who private messaged me, i appreciate you took the time to offer advice and kind words....thank you

Update and Progress....

We have had an enormous battle over the last 5 years getting any form of help for the symptoms caused to my brain from the hemorrhagic stroke i had Jan 2008.

(My hemorrhagic stroke was caused by an Arteriovenous Malformations (AVMs) a congenital malformation of blood vessels in the brain which can rupture into brain tissue as they get larger.)

My rehabilitation was focussed around a Ischaemic stroke, which shows similar symptoms to hemorrhagic stroke. (We are sure the reason the brain injury symptoms were not dealt with, was because of the stroke diagnosis)

Anyway......me and husband struggled on.....no we battled on, we cried, we argued, we misunderstood, and we lost our way for a while..... We needed help.........

(After the first year at home, I stared to self harm (I'm so not proud of this time) I didn't understand what was happening to me and because you couldn't see my brain injury, i thought harming myself would let people know i was actually ill)

Some 3 years after B.I. we found that help.......HEADWAY

We spoke to the nurse led Headway helpline, they offered practical help, advice and pointed us in the right direction. We went back to our surgery saw a different G.P. and gave him the Headway leaflet explaining brain injury. He started to put systems in place to help with what Headway call the "hidden injury to the brain"

Basically....just because you can't see it, doesn't mean its not there.

(Headway leaflets should be available to ALL brain injury patients their families and carers on leaving hospital. It should be part of the discharge process, to ensure you are give you Headway leaflet/contact details and then its up to the patient/family/carer whether they choose to use the info, but at least they will have the choice)

Nov 2011 I was reassessed and on the back of that have gone on and continue to receive lots of practical and supportive help from many Neuro specialists.

Also....

I have learnt to say how i feel, because if you don't say how you feel, how can people know.

I'm not so headstrong and stubborn and i will ask for help.

I get 16 hours a week help and I embrace the help, I've stopped being embarrassed (my own issue) and am now practical in how I use the help.

I plan and prepare so we can lead the best life possible that suits us

I do my best to look nice, wearing nice clothes and make up, and if people can't see beyond that (many haven't) and accept I have a brain injury for life, then that's their problem. ( I'm not going to look ill or unkept just to be perceived ill)

I have lost many things these last 5 years and I have gained many things as well

I walk with a stick and if I forget and wobble and look as if I've had one too many

......so what!!!!

Also July 2013.... On seeing a Neuro consultant at Sheffield Hallamshire he apologised for the service we had received after my initial life saving operation and said the hospital had learnt lessons from what happened to me, and hopefully it will never happen again. (shame i was the guinea pig hey!)

I could have kissed the consultant.....he confirmed what we knew already from our time researching, reading and documentaries etc.... just a tragedy it took 5 years to hear it from a Neuro professional.

The future....

After two lots of radio surgery I still have a small part of the AVM left and may have further radio therapy 2014, otherwise no other surgery. We have discussed brain surgery with the NC but their is no guaranteed improvement, and so we have chosen not to go that way.

I accept I will never gain my independence outside the home. I can go out but must have someone with me for safety reasons. (It's c..p to loose your independence but I've found a new way of independence....go me)

Any unexpected noise or movement and i go into fight or flight mode, usually flight and end up the middle of the road

We now have strategies in place that allow us to do many things

holiday in the uk, Headway coffee mornings, visiting family, days out, etc....but the brain injury must always comes first. (Whether we like it or not)

We now fully understand what we are dealing with and when the difficult times happen (brain injury related or not) we manage much better.

Last, but by no means least...... I without doubt would not be the person I am today pre or post brain injury without the love, understanding and care of my lovely husband....Thank you Derek i love you dearly.

Hope this makes you laugh, like we all did....... The first time we saw the consultant at SH to review my progress...... he said " you are so lucky to be alive" and I said "why should he be happy"

As usual i waffle, sorry! been wanting to off load for days and I certainly have

Best wishes to all, Take care and speak soon

[iforget]

Fresh out of brain power for a [proper response so hope this HELLO!!! will do for now

[Hidden in reply to iforget]

Of course it will do

[cat3]

Hi Leslie; good to see you're back. It looks like you've really been getting to grips with the many issues surrounding your condition............& there've been some precarious episodes it seems. Well, you certainly appear to have taken control and, from where I'm standing, you're looking pretty good m'dear.

We all know we'll have 'off' times but let's celebrate the good ones at every opportunity !

Best wishes x

[Hidden in reply to cat3]

Thanks Cat,

Celebrated last night with a glass of wine or 3............well! It was 2 because I knocked number 3 off the table

......Dam this ataxia in my left arm, but like you say it's one of the many things I'm coming to terms with

Hope you are keeping well??

Best Wishes and take care Jo