Neuro-psychology assessment.

[hayabusa]

I must admit, I had got proper stressed up about this for weeks but hadn't realised just how stressed I had become.

I feel relieved now because its done and I know there is nothing they can do to help.

It was complex because I have complex brain issues.

Moderate to major brain trauma, PTSD quite bad, memory issues and periods of major dysfunction, confusion, occasional lack of physical co-ordination and problems with cohesive thought processes.

Its nothing my partner and I didn't know already.

I scored in the upper 90 percentile in some things but did really badly in others. I was very surprised to see how my brain just doesn't work in some areas. I did get upset and found it quite hard to keep a lid on it while going into difficult past experiences like my accident. But I think I held it all together quite well.

The consultant was quite upset to hear that I have totally lost trust in other people and I said sorry to him, but that is how I feel. This is why I don't let anyone close to me.

I think anyone who hasn't been through something like a major accident or illness really just cannot understand how it feels. The only people who do are those who have been thought similar themselves. But that's just my feeling.

Does anyone else here have complex brain injury issues?

I've had to postpone my start at Headway because Adult Social Care haven't sorted out my funding and left me with too much paperwork to do in time.

Why do social workers just act like financial loss limiters for the local council? I avoid social workers but I have got to go through them to get to Headway. Still not there yet !

[sospan]

Oh yesmuch the same. I also score very high on some test and then on thing like "trail following" do so badly that i can't even complete the test.

I don't have much contact with people outside the family but firms and busineses i have to deal with can be quite an angry experience. Don't know why but i find all businesses incompetant at the moment.

Like mostof us i get the roller coaster of emotions however at the moment the high points are gettting fewer and fewer. A lot of it is down to having no money and no future and no way to change it. Where i am there are no rehab services - even the headway branches are " tea and sympathy" which is not what i want. I can spend weeks where apart from a 1 hour shopping run, don't leave the house.

My local adult services are equally poor and have spent the last year treading water in terms of providing me any funding.

Yep with you 100%

[hayabusa in reply to sospan]

That sounds amazingly similar to my situation.

Do you find that the authorities, medical profession, and other people don't think there's much wrong because you can talk quite intelligently even though your head's a mess behind the words?

I cannot deal with other professionals, they do my head in and I end up annoying them instead of getting help and support. I can be extremely hard work without realising it.

I can empathise with you on being stuck indoors and feeling isolated. I go stir crazy being stuck in the house. We struggle hard to maintain and run a very old car and when that's gone we will become totally housebound.

Something the social services do not understand is we often want to feel part of everyday society and be out and socialise amongst society rather than just being lumped together with other people like us.

Its like being put in a convenient box, all together. Being isolated is also about being isolated from regular day to day society. It would just be nice to be part of the regular world now and then.

Its not just about having the money, its all about access.

But social services insist we can only go to their day centers.

Our local social services are taking the mickey considering the county council is about to spend £50 million on brand new town centre offices plus all the fitting out costs. They do try and con us they have no money. Well they do, but just for themselves lol

I do have to remind them which probably doesn't go down too well.

[sospan in reply to hayabusa]

My Neuropsychologist knows I have a "moderate brain injury" but says because I am "high functioning" and have my own coping strategies so there isn't much she can do.

So the question is what next ? my local headway branches just have "games days" and the "tea and sympathy" sessions I mentioned earlier - that's not enough of a challenge and as you say I don't want to be grouped with other people with injuries I want to compete with the wider society.

Some of the "advisors" I have spoken to have said that because I am "classed as disabled" I can have a guaranteed interview for some roles. So how does that help me knowing that I can get an interview because I am special case and not on merit ?

Given a fair amount of cash per week to go off and do "activities" I bet a lot of us would be on the mend a lot sooner. Its the old use it or loose it - at the moment I have nothing to use my remaining processing power, old skills so they are getting worse. Month after month I am getting more fatter and creaky just because I can't do something which gets me more and more cranky with people who can do things but are useless or incompetent.

[Danslatete]

I found my headway group a great stepping stone into reality. They got me on an art course that I would never have even thought of trying. This gave me a way back in a quiet social situation doing a subject you just can't fail at. Art is whatever you feel, however you make your mark.

It gave me a bit more confidence to try other things that were alien to me.

Our group played games and did teas and cakes, it was very difficult because I was so much younge than most people there.

My assessment said moderate to severe difficulties it was a difficulty to see it written in black and white. But I can function with my diary and prompts and family help.

[sarahbia]

I found the neuropsychological assessment really depressing and I actually cried during the test. I knew that something was wrong but the assessment highlighted exactly what it was. I scored in the upper ten percentile for some things and then in others I was low average which in essence means I am not considered to be 'impaired' but it is obvious that the damage was mainly done to the left side of my brain. All neuropsychology really did for me was show where I am having difficulties and then I was given a book full of memory techniques which I never even read because as someone with a brain Injury I tend to get overwhelmed by too much information and reading and practicing a whole book of memory techniques by myself was a somewhat daunting task so I kept on putting it off.

[Negeen in reply to sarahbia]

Don't cry while ur taking the test they will hold that against you.

[hayabusa in reply to sarahbia]

I didn't come away with much at all apart from some clues about which the tests I was rubbish at.

He was impressed that I could pronounce two words on hus list that he had never heard,any patient do correctly. That was useful for his assessment of an ABI was it?

The tests I did were all purile and too simple. Generic tests for all ABI's all done on photocopied papers.

The tests were laughable tbh.

He clumsily incised my life experiences of a spiritual nature with a surgical meat cleaver.

What do you do? Smile or cry?

[Hidden]

The first neuropsych I saw for the tests was so insensitive. He said "You may never work again" after I'd done the test and he was showing me out the door! To say that to someone who only has her own income to rely on, living alone, parents dead, whose whole identity was tied up in her career is cruel in the extreme. How does he think people can survive with no income from early 40s to old age/death?

I hope you get your funding and paperwork sorted out soon! It's not like it helps our moodswings/irritability/impaired stress-dealing/leaky-face syndrome etc much when the powers-that-be do this!

[hayabusa in reply to Hidden]

The ptb.

Like dealing with stupid everyday.

People who are highly paid for not doing their jobs.

No matter where you have come from, they treat everyone like an idiot.

My neuropsych was so programmed. Total distraction with other meetings and other appointments while he clock watched all the time and checked his phone every ten minutes.

I was diagnosing him too.

[hayabusa in reply to Hidden]

I can totally see your stance.

Same here in 2001 when I had my accident and running my own business and a family to support.

As a creative, intelligent person it's like talking to cottage cheese with any of the authorities. I had no appreciation as a lifetime career professional that things were so bad! What care services? There is zero.help or support to get you back to work or back on your feet after a major illness or accident.

We were conned into believing there was.

You are just left hanging, wondering where the heck do I go from here?

[hayabusa]

Good news! I start at my local Headway next week. Adult social care finally sorted my funding, but only after I said they are distressing and harming me.

I think their use of the word "care" in their service title could be fraudulent.

It's taken me 3 years to get to Headway since my first visit. First of all Adult Care would not accept my GP's word that I had an ABI, his word wasn't good enough. Then my GP was unhelpful in obtaining an MRI scan and access to a neurosurgeon for diagnosis.

3 years of struggle to get diagnosis from an accident 13 years ago!!!!!!!

I was so impressed with Headway, I knew I wanted to be able to go there 3 years ago and now it's happening.