Headway
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Questions about your reason for being here

I would like to see WHY all of us are here, so I've just got a few questions. I hope lots of people answer, so I can see the spread of answers.

Why are you here?

* Is it you who has the brain problem?

* If not - wife/husband, parent/child, friend? ...

What *is* the problem?

* TBI?

* Stroke?

* ...?

When did it happen? And how (if there is an answer to that).

What are the major remaining problems?

* Memory?

* Speech?

* Vision?

* General?

I really hope no-one is offended, I am just interested to see why we are all here.

Flump

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why are you here?

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im here due 2 tvi then strokr l not reply2 the above seems fishy v

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A.B.I to me 10 yrs ago. Memory, concentration, forward planning/thinking. Fatigue, visual problems. I can't remember right now because I'm quite tired.

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I would like to see WHY all of us are here, so I've just got a few questions. I hope lots of people answer, so I can see the spread of answers.

Why are you here?

* Is it you who has the brain problem? Yes

What *is* the problem?

* TBI? Yes mild as these things go. Fratured skull/and some subdura hemotomas

When did it happen? And how (if there is an answer to that). Found on the ground in one of london's royal parks, I probably fell off the bike I had minor wrist and hip damage but I don't remember and I was the only one there.

What are the major remaining problems?

* Memory? My short term is mildly worse in some aspects

* General?

I get tired quite quickly and my balance walking can drop off quite quickly I managed to damage my self last Friday, due to staying too long.

At the moment I have quite persistent though mild tremors, what that is about don't know!

Why well even for someone with a good prognosis you don't get a huge amount of info. And I've always been curious.

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you have tremors um im going 2 see a specilst next week goning ask why ive started with them about 1 year ago i thought nerves angezity 1st but they hav got worse more often never seen or met this doc spelisit i g next week 2 hope he can tell me

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have you any idea what other than our tbi , mine sah/ then another stroke on top no 1 will tell me what my arm worst tremors are i could be next 2 anyone it starts i culd hit the it jerks up down in out no 1 will tell me what it is only from the sah and stroke, they came on 2 years after this is bad arm/hand that doest work

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Hi Flumptious. Mine was a SAH in Dec 2011. I'd been highly stressed about a scam on my bank account. The night of the bleed I'd checked my account on line & found I'd been targeted again; I went light-headed and passed out. My partner was told by the consultant that it was almost certainly as a result of the stress.

The unresolved issues are loss of short term memory, balance, vision & mobility problems, fatigue, headaches and high emotions.

I am here for the support which is so sadly lacking elsewhere.

Cat x

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your right about no support no help but i than you fr putting about doc telling husband stress casing more things ive had lot stress well polems whie now i no makes my head pain worse but rest dizzy balanc all i didnt no that reason makes sense tho i dizzy herenow and im worked up and upset stressed theres 2 man people coming here at 1s i floodd my ouse lastweek there elec man gas man insurance all coming i dont feel up 2 coping dealing with them i was told ake list of damage i carnt thnk dont noive no 1 to helpso ot deal myself and clue when its wait see

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Oh v I'm so sorry you're so stressed, but it's understandable with all that's going on at your place. But try to take things as they happen and avoid thinking ahead too much.........things often turn out to be more manageable than we anticipate.

But if it's as bad as you expected, come back and talk about it & you can at least have a few virtual hugs & words of comfort.

It's hard isn't it coping alone ? xx

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Cat they told my family I wont walk again but one day I was tapping my feet and thought if I can move feet then I can walk, hubby got me a zimmer frame and by christmas 2011 I handed him a pressie. I now walk 60 feet plus more when back isn't hurting me. Smile and never give up xx

Win

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Incredible what willpower can achieve isn't it Winb.............and your final comment is a credit to you. Well done, Good luck and All best wishes for further improvements.

Cat xx

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Oh no Cat hope your partner told the police and they got your money back xx Bexx

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Yes I did thanks Bexx, but not from the scammer................I was reimbursed by Halifax Bank who seemed genuinely concerned and couldn't have been more helpful.

Hope you're doing OK m'dear. xx

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Why are you here?

As a long term TBI survivor I might learn something new, or I might be able to contribute something to others

* Is it you who has the brain problem?

Yes, but it's no longer a 'problem,' it's an accepted way of life.

What *is* the problem?

TBI, left temple area

When did it happen? And how (if there is an answer to that).

On Sunday 6th July, 1967 at around 0745 in Wickham Road, Shirley I was riding my motorbike and signalling to turn right from a major road into a side road. I was straddling the white line and I was struck from behind by a brand spanking new blue Ford Cortina vrm EDY 409E. The bloke was coming back from a party. I felt the impact and I felt the bike slew from under me and then for 8 weeks nothing.

What are the major remaining problems?

* Memory? Short Term is ok, no good for decoding Morse code, but most goes in.

* Speech? No stuttering for words that don't come - odd loss for words.

* Vision? Still works - troubled by flashing lights which now cause petit mal

* General? Don't mix with people; sometimes easily confused with events.

I could also do with winning many millions on the Lotto allowing me live in a detached house away from a city, be surrounded by nubile Thai, Chinese, Indian or Pakistani ladies, have daily deliveries of Grants, Johnny Walker's Red Label, Eldorado 5 year Rum and Kronenburg1664 beer. I'd want to have top of the range radio receivers and a proper antenna system so I can pursue my hobby during my down times from drinking and fornicating what remains of my life away. Don't know what the wife would say about that ...............................

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why red label Johnny walker ?

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I like it!

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HORRENDOUS FOR YOU. ISN'T STRANGE HOW WE ALL REMEMBER THE EXACT DATE & TIME OF OUR BI. MINE WAS 2PM FRIDAY 14TH NOVEMBER 1997 IN A TAXI ON THE WAY TO THE STATION TO GO TO A GIG. STRANGE BECAUSE I REMEMBER NOTHING FOR THE NEXT 2 WEEKS.

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Horrendous for us all Zeblet, I think. Yes, it is. I was doing my paper round and it was the last customer who came out and called the ambulance. Apparently the bloke stopped 150yds down the road. I missed out on eight weeks in a deep coma but if someone talks about events in 1967 its like I was never there because I've forgotten most of the immediate stuff and a lot of the post TBI stuff in 1967. Peculiar that.

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I DON'T REMEMBER THE REST OF 1997 OR THE FIRST 4 MONTHS OF 1998 - MY 'FOG' WAS LIFTING BY THEN.

WHAT HAPPENED IN THE WORLD?!!

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8.05 pm Friday October 20th 2006 never forget that night, pain you cannot describe or imagine ,I am banned from all vaccinations now.

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Horrendous yes, I'm just about to hit the first year anniversary if it can be called that... 9/4/2013 at 3pm. I remember nothing of the crash, just remember dropping my son at his Nan & Granddads then driving off & that's it until I woke up in hospital. Only know what time it happened because I was visited by the police weeks later to see how I was recovering as apparently they all thought I wouldn't make it. Anyone have any ideas on how to cope with the first one. as I'm not sure how I'm going to feel on the day.

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I celebrate my anniversaries. I go to the hospital where I 'woke up' (well, when my memory started working again - I can't remember the proper hospital, just the rehab centre). I take a nice cake in, to give the staff and some of the current patients, and I just make a big deal of saying thank you. I think they appreciate it, and I love it. Last year it was on a Saturday, so I took my girls in. They were only a toddler and a baby when I was in the hospital, and now they are huge!

Then, in the evening, I insist on drinking some bubbly. I am celebrating the fact that I survived that day!

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:D

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Laughing at your original comments about ideal lifestyle, brainedat17 - sense of humour helps us through!

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It's no joke Aefwyn; all I have to do is win the lottery ................

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HERE HERE TO THE HOUSE, I'VE DESIGNED IT MANY TIMES IN WHAT'S LEFT OFMY BRAIN.I'LL PASS ON THE LADIES AS I'M FEMALE &I'D HAVE TO MISS OUT ON BOOZE- MAKES ME SICK WITH MY DRUGS & I DO ENOUGH OF THAT ALREADY! I WOULD BE LIVING IN FREEZING MOUNTAINS SOMEWHERE LEARNING TO SNOWBOARD. HILARIOUS GIIVEN MY LACK OF BALANCE, WOULDN'T MIND BEING ABLE TO WALK DOWN THE ROAD WITHOUT FALLING OVER! CAN SOMEONE PLEASE LEAVE LOADS OF MONEY....

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Careful, you might get invited over!!!!!!

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YES PLEASE - WHERE WOULD I BE GOING??!!

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I've been asking myself the same very question since my TBI and I still don't know ......................

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why am I here

I am not alone before headway I was in a very lonely place,

I have brain damage, serious damage to my nervous system

a stroke, and ms type symptoms , and now muscle loss in my right shoulder,

I got this from a vaccination,

I have some memory loss mainly when I get too tired,

some problems with vision Migrane,

headaches pain electric type shocks feeling unwell,

I never know how I am going to be from one day to the next or minute or hour,

I get irritable easily lose my temper mainly when my routine is interrupted or what I am doing,

I find it difficult to cope with daily life a lot of the time but I manage I have had seven and a half years of practise,

I want to do many things but there is mostly never a right time this goes for social events as well

this is not a full list but I think you will get the drift,

take care , john, xxxxxxxxxxxxx.

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WITH MY ABI I CAN'T TELLYOU HOW MUCH I IDENTIFY WITH ALL THE EMOTIONS ABOVE. COPING WITH IT IS SO DIFFICULT EVEN AFTER 16 YR TAKE HEART YOU ARE NOT ALONE

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thanks for that mate

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I have a Mild /Moderate BI, apparently I am "high performing" after my injury which on some days makes me smile. I have like a lot of us balance, headaches, loss of memory, occasional speech problems, have problems learning something new or following instructions.

Why am I here ? To try and learn something from the participants on here that may help me and give back the little I have learnt.

Oh and hopefully find some interesting hobby that I can do on the meagre benefits I get

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Why are you here?

TBI for my good self

9th December 1994, Leipzig, Germany. ?Accident while working on a building site.

What are the major remaining problems?

Short term Memory problems, partial blindness, concentration issues, left side coordination is shot, epilepsy. endless headaches, etc.

If you need anything else, just yell.

Andy

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well one thing you can say is,

we are all in this together.

Flumtious you have not told us yet why you are here ?

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Sorry, Spartan, I didn't have time last night, then I've been at work all day. I have, now (above). I did say my stuff before I read your message, honest!

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I would like to see WHY all of us are here, so I've just got a few questions. I hope lots of people answer, so I can see the spread of answers.

Why are you here?

This is another mutual support option outside of Headway group meetings

What *is* the problem?

Sustained a TBI

When did it happen? And how (if there is an answer to that).

2006. Was at work and fell approx 10 feet face first onto concrete (no memory of it but have seen the RIDDOR reports)

What are the major remaining problems?

I have zero short term memory, my 'executive functions' are shot, personality has changed beyond belief and life as we knew it is over... now I am now all round wobbly (mind and body), unpredictable (emotionally and physically) and easily distracted by ooh look shiny...

These are no longer problems this is life...part two ... and we deal with it as best we can.

I really hope no-one is offended, I am just interested to see why we are all here.

Not in the least offended...I think it will be interesting to see the answers.

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Ok, I got encephalitis from an unknown virus OR it was PRES which is caused by wrong medication, no decision on that. I think it was the flu vaccination I had cos I never felt well after that and it was the first one I ever had.

I'm here for the support and somewhere to vent my frustrations from time to time. Also to help support others, cos I know it's no joke when you're up against the establishment.

I have problems like others, with balance, erratic short term memory, vision and fatigue, I can sleep for England.

I no longer drive cos spatial awareness is a bit shot but getting better, I hate public transport cos it shakes my head about too much and I have this constant feeling that I am shaking, like Parkinson's, but I'm not, weird!

I have recovered very well, walking executive functions etc, not bad considering my husband was asked to put DNR on my notes, he didn't I add, in case I had heart failure, my major organ function was extremely low when I was in a coma.

I count myself very lucky I'm still here and am still determined to do better, while out yesterday, I had this urge to run, I didn't I haste to add, but time to get that treadmill I think then I can practice in the safety of home.

Think that covers everything just ask if you want more info

Janet

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have you got some evidence that it could caused by a flu vaccination. google vaccine victims support group.

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I will google them, but no proof when they were doing all the tests in the hospital, my husband forgot about the flu jab so it was never suggested as a cause . When I saw the neurologist at the hospital for the last time I remembered then and she said she wished she had known at the time.

I even thought it might have been our new kitten, she'd scratched me a few times, she's since died from FPV, I haven't got the energy to pursue anything, as my husband says its like asking if you were hit by a red lorry or a yellow lorry, the effects are the same.

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so it should be recorded on your medical notes , don't let it go , I haven't, my trauma was from a Pneumovax 11. I have the proof which helps.

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Ok I will mention it to my GP next time I go and I see the rehab consultant in July so I'll mention it then, it was him that thought I may have had PRES, but I'm only the 3rd case of that he's seen if it was that, and my recovery has been the best, I don't know, it's all so exhausting!!!!

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1/ Carer

2/ no

3/ wife

4/ Sah

5/ Dec 2000

6/ Personality change - short term memory loss - lack of drive can be easily led.

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NOT OFFENDED AT ALL. THE MORE INFO WE HAVE THE BETTER. I HAD ABI WHICH RUPTURED IN 1997, DON'T KNOW WHY. LASTING EFFECTS ARE EPILEPSY, CLUSTER HEADACHES, MEMORY PROBLEMS, VISION PROBLEMS.POOR BALANCE & A FEW GENERAL ONES

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I HAD AN ABI WHICH RUPTURED IN 1997, WE DON'T KNOW WHY. I'M LEFT WITH EPILEPSY, CLUSTER HEADACHES, MEMORY PROBLEMS, VISION PROBLEMS & A FEW OTHER GENERAL AFTER EFFECTS.

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I forgot to mention; one thing that does bother me severely is noise. I can cope with loud music but low frequency repetitive noise, humming and even kids running around on wooden floors really does me in - I have to remove myself from the proximity otherwise I go into a rage. Earplugs only dull the effect.

I didn't mention the change of personality because I have been v2 for 47 years longer than v1. Can't even remember what v1 was like now but my girlfriend went within 3 weeks of me coming out of hospital and my friends? All gone. I have a couple of good friends but that's it, sadly.

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I had a benign tumour removed in 2010 and have made a good recovery, I'm now working full time. I still have problems with my sight and my short term memory is shocking and when it comes to learning new things, forget it, my cognitive ability is severely impaired. I can just about manage an easy sudoko puzzle but it takes a while.

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Thanks, guys. It is really interesting to know all this.

I apparently fell off my bike (*with* a helmet on!), on holiday in France (20/7/2005). I woke up a good few weeks later, in hospital in England. I don't remember that - I don't remember anything until Christmas, and even after that, my day-to-day memory was useless, for ages. I knew my husband, and our toddler, but I didn't know we'd had a second baby, and moved house. My day-to-day memory is fine again, now (although I am really careful with keeping notes, just in case!), but I still have no memory of those few years.

It must have been absolutely awful for my poor husband: a wife in a coma, a toddler, and a baby, to look after in a foreign country; then that wife being in hospital, for months, with no day-to-day memory.

I was off work for 18 months, but I was really lucky, as they did finallylet me go back to my old job (as a university lecturer).

I am officially blind, although I'd say partially sighted (but hey, I get Disability Living Allowance, free buses, and reduced train fare, so I don't complain!).

My balance is not as good as beforehand, but it is a lot better than it was, and it is still improving. I always insist on walking down the middle of the stairs at the train station near work, just because I *can*. When I first went back to work, I *needed* to hold onto the bannister, but I am so much better now!

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Oh yes, I forgot, my handwriting is awful! My co-ordination really went, but I do think that is still improving, too. maybe I'm just taking more care!

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Handwriting for me too and my eye, hand coordination isn't good. What's your subject Flumptious?

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(Sorry, I only just spotted this question).

I am a rock-doctor, me, and my husband is a bug-doctor. I am a geologist and environmental scientist (working on mineral deposits, and contaminated land), and he is an ecologist, who normally works on insects.

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Many thanks for your reply Flumptious. Idle curiosity on my behalf; I'm a tech in a London Uni. Best ..

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We NEED the techies in science departments, you guys are really useful!

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I do my best...... Cheers

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- hubby fell in June 2012 and sustained a right frontal lobe brain injury plus bruising to both parietals and evidence of SAH - so TBI

- hubby has no recollection of accident or 3 weeks in hospital and very limited recollection of month in neuro rehab

- remaining issues are mainly invisible to outside world as they see what they believe to be full physical recovery BUT

- some slight memory issue's

- some slight balance issue's

- inability to multitask

- unable to deal with multiple noises going on at once

- lack of empathy

- lack of motivation to socialise

- initial depression which required further inpatient care

- some fatigue

Impacts - cannot return to former CEO role as it required endless networking in "busy" places, limited socialisation and effect on relationship

BUT - fully independent, able to undertake voluntary work particularly when able to work on own and away from noise.

Why am I here????

Partners can often be the "invisible victim" of brain injury - loss of partner they had, getting to know new partner, loss of previous relationship, limited access to expert knowledge on effects of brain injury, stress of caring, need for somebody to talk to who has been there who you do not have to explain to........invaluable knowing that I am not on my own, not unusual, that what my hubby has been through/going through has commonality with others. Learning from those with brain injury (priceless) and learning from those who live with/support somebody with brain injury.

Thank you to all on the site - it kept me going when life seemed unbearable and when I felt totally isolated.

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"Partners can often be the "invisible victim" of brain injury " - Oh, yes! I always think that. I have so much respect for my lovely husband. it must have been so hard, for him. It was easy for me, by comparison! (OK, I don't really mean that, at all, but he has had so much to deal with. the first few months must have been so hard - I didn't know what was going on at all, but he knew it all, and had no idea if I'd recover.)

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My partner had Tbi in May 2012 after being punched in an unprovoked attack. He has very similar issues to your hubby but to the outside world, he looks fine. His empathy has really improved lately so he can listen to me moaning about work and offer real insight and advice now. This is a huge improvement and shows that he is still recovering -a year ago, he would have seemed totally uninterested in my problems. I'm optimistic he'll carry on getting better slowly and I hope your hubby does too. I accept he will never be the same as before but we are still both learning what triggers his tempers etc and are getting better at avoiding stressful situations. No denying it's hard work though and this site is a Godsend x

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No, Trisi, you misunderstood me. *I* had the TBI, and I was saying how much harder it was fir my husband, for those first few months, when he didn't know how much I'd recover. It is horrific for you poor spouses to deal with!

The recovery can keep going on. Don't give up!

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It is my husband who sustained a severe TBI when he was knocked off his bike in Oct 2011. The main damage is to his frontal and temporal lobes and his cerebellum.

Jake has a complex mix of deficits that include:

Expressive & receptive aphasia

Double vision

Long and short term memory loss

Impaired exec functioning

Severe fatigue

Ataxia and poor mobility

Dyspraxia

Emotional lability

Hydrocephalus

Epilepsy

Inability to initiate

He is also, as a result, depressed, frightened and seriously lacking in confidence and self esteem.

Fortunately he has retained his sense of fun, determination to succeed and empathy / kindness.

He's amazing.

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"Fortunately he has retained his sense of fun, determination to succeed and empathy / kindness."

He has also retained his lovely wife, which he is very lucky for.

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It never occurred to me to go into detail about the issues I am left with but reading some of the replies I see we have some common issues...

My senses have all been altered by my injury.

Noise is a huge issue for me and every handbag and coat/jacket I own has its own set of earplugs...I am hyper sensitive to sound and can't have a watch or clock that ticks in the same part of the house. I find the bubbles in a can of soda are just too loud and find if I am out in public the noise levels can be completely overwhelming and this in turns affects my balance, vision, speech and my emotional well being.

Taste: things don't taste the same. Fruit (which I love) tastes foul -like rotten eggs. If I persevere it eventually starts to taste more like fruit and I can eat it but the first few bites are truly vile.

Touch: I cannot distinguish by touch between things that are wet and things that are dry. This caused a lot of problems early on and I would refuse to put clothes on "because they were wet". That has not changed but my understanding of it has and now I simply check with someone if something is wet or dry...and trust their answer even if my own senses tell me differently.

Smell: My sense of smell is seriously acute and this can be horrible. Food outlets make me gag because the cooking smells that others enjoy are to me a vile stench and certain smells will literally make my eyes water. Foul smells are as you might imagine pretty foul, but so called nice smells are problematic too and people wearing perfumes can leave me gasping for breath....even if they are just walking past

balance - mine is a bit off and I move at an angle when walking if I am walking with someone along the street either I or they can end up in the road or in a hedge without me realising what is happening. If someone walking with me decides they have had a enough and they switch to the other side without telling me first, this switch can "make me fall over" because it upsets my equilibrium

Handwriting: I just can't do it. It doesn't look like my writing any more and its barely legible. I tend not to write by hand much and when I type I have to auto spell check everything because it often doesn't make sense and at least the red lines alert me to this.

My startle reflex is heightened and this is one of the main reasons (along with changes in spacial awareness) that I no longer drive.

Combine this with the usual cognitive issues, memory loss, concentration, multi tasking, emotional and motivational stuff and the challenges become more apparent...

But the 'good news' is that "to look at me you would never know" I look just fine... LOL

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Thanks for that, Iforget. Some of your problems seem surprising, but hey, the brain is a surprising thing. It's like my eyesight - people always say "It's your right eye, isn't it?", and they don't understand when i tell them that there's nothing wrong with they eye.

The important thing is, though, for all our problems, we *are* lucky, to still be alive!

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We try to look at our little post TBI surprises as ensuring that life part two is never boring ;)

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Hi

Had A TBI and coma 50 years ago this month HAD NO TREATMENT was left to my own devices lucky not to be in a mental hospital in the first 10 years

Have learnt to cope eventually only in the last 12 months have I started to receive treatment

this forum is the best part of my treatment details I have given to my GP

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Why are you here? So o didn't feel so alone in the after effects of my brain injury.

* Is it you who has the brain problem? Yes

What *is* the problem?

* TBI

When did it happen? And how (if there is an answer to that). 1st May 2004, I was a backseat passenger in a car and it was an old car so the middle seat where I was sat only had a waist strap, the drive tried to take a turning he has missed last minute and crashed into a telegraph pole, I was thrown about in the car and the left side of my skull had three holes in It which was fixed with 3 metal plates and 5 screws. I was in a coma for 2 weeks and suffered mild epilepsy for 2 years (haven't had a seizure for 5 years). - 7th December 2007, again , back seat passenger but this time with a proper seat belt ..... The driver was inexperienced and pushed the speed limit, the car rolled several times where i was again thrown around attached to the seat bel, as a result the front of my skull was cracked in several places but did not require an operation. Just left with 9 scars on my face and 12 on my back.

What are the major remaining problems?

I think a definition that best explains what's left of me now is "Cognitive function disorder" I struggle immensely in social situations which leaves me locked away all the time (I do go to University but do not leave the house for anything else) my anger comes out of nowhere and is aimed at anyone I can find. I am often very out spoken and do not fear saying what I think which has gotten me in considerable trouble and unable to find work. Incredibly anxious about everything, never feel good enough. I struggle to articulate myself and speak to anyone, even close friends or relatives, I get flustered and jumble my words and then get angry at myself but take it out on everybody else. Fortunately the only physical effects I have are excruciating headaches a few times a week.

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Encephalitis 7 years ago - went to bed feeling normal, woke up 1 month later in Southampton ICU recovery!

Have had uncontrolled seizures ever since, along with many of the other changes mentioned on here, with regard to senses.

This is an interesting post, as it does give us survivors some insight as to what the neurologists hear each day.

I took up smoking roll-up ciggies, just to get me outside of noisy social situations.

Why am I here?

I ask this question most everyday, to myself. Consequently I write almost everyday and read from my old uni days, the writings of Hume, Descartes etc.

In my mind I am a great philosopher and political leader - I could do everything better than this social system that currently surrounds us.

Too much time on my hands?

No, just time to realize how messed up the system actually is, hours spent dealing with the establishment, to justify why I am here and sadly claiming benefits.

I was never rich but I never had time to realize how poor and ill-treated I was until the illness.

Why I am on here writing now and reading all of your posts? is of great re-assurance, it relieves some of the guilt I carry for getting a brain injury.

Every seizure I have is yet another reminder that I am not all here and I feel like a let down and a freak to my family and especially my son who is now 8 years old, I have no memory of the 1st 2 years of his life and do not partake in parent social groups at his school.

Yes, my energy levels feel low today for some reason and that is why I am here trying to connect and not feel ashamed of this disease 'they' call epilepsy.

I am considering printing a new T-shirt for myself - DROP OUT with mental illness!

As the years drift past, I am constantly researching and keeping up-to-date with neuro scene, as my work before as a lecturer promoting my own form of installation art, using sound vibration and light, encouraging and making the participant emerge all of their senses in an environment - I want to get back to exploring this field of art, but I just feel overwhelmed by my senses now!

Well, I answered the Q's and had a moan/ramble - hugs to all and stay connected! x

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Hi Flumptious (and all!)

**Edit after writing - apologies for such a long post, I got a bit carried away!!**

Why are you here?

To learn about brain injuries and life after them

* Is it you who has the brain problem?

No - my 37 year old partner

What *is* the problem?

* TBI? - Yes

* Stroke? - Yes and brain hemorrhage

* ...?

When did it happen? And how (if there is an answer to that).

Coming home from a pub crawl on Saturday 3rd May - he stepped out of the lift to go to our flat, turned, lost his balance and fell straight back hitting his head. He knocked himself out so I called an ambulance - we stayed in A&E for 5 hours where he slept while they gave him 2 litres of saline then said we could go home. We were home by 6am Sunday morning and went straight to bed where he basically stayed until Thursday 8th May. All week he was complaining of a splitting headache and had no appetite. I finally managed to get him to go back to A&E that day where they checked his eyes then sent him home with some co-codamol and told him he had concussion and to expect to have a headache for the next 4-6 weeks. The following day I went to work as normal and left him in bed - when I came home, the front door was open and it looked like he'd ransacked the flat looking for something. He was just looking at me blankly so I called the ambulance who rushed him to hospital with lights and sirens. They immediately scanned him and saw his brain was bleeding and immediately sedated him and took him to ICU - during further checks they saw one of his pupils was unresponsive to light and scanned him again, this is when they saw that he'd had a huge stroke (thankfully in hospital) and his brain was swelling - they had to cut out part of his skull in order to let it swell without damaging it further and we're still waiting to find out when it will be replaced.

He was then put into an induced coma for the next week - he came round slowly and the left side of his body was paralyzed. In total he spent 5 weeks in hospital on various different wards - feeling and movement eventually came back to his left limbs but he still can't use his left arm or hand. Last Friday, 6th June, he was allowed home because he was so desperate to leave that he was ordering taxis (I had to ask them to block his number eventually) and, medically, they couldn't do anything more for him.

What are the major remaining problems?

* Memory?

He has made up 2 things which he thinks happened to him while he was in hospital and no matter what I say to him, he tells me I'm in denial. Short term memory isn't great but several repetitions eventually get messages to his brain.

* Speech?

He speaks as if he's in a hurry to tell a story, sounds like he's chuckling when he's talking which turns to crying occasionally, doesn't seem to know when it's appropriate to enter a conversation and isn't very good at appropriate timings to use swear words - although this has got a little better over the weeks.

* Vision?

He closes his right eye a lot - it seems to be because he can only focus with his left eye.

* General?

Generally he is still himself with a few minor changes, although the lack of empathy is something I'm finding really hard to deal with. I broke down in front of him the other day and he just didn't seem to care - it's very knowing that it's not his fault and I'm desperately hoping that this is only temporary but only time will tell.

We have an excellent circle of friends who have supported me 24/7 - he's from New Zealand so his mother and step-father arrived 2 weeks ago tomorrow and initially i was hugely relieved that I could 'hand him over' as it were so that I could get a little time to myself to sort my head out and take it all in. Frustratingly I found myself looking after them also - they felt that I was in charge and that I had to ask all the questions and arrange everything. His mother was very worried while they were at home but now she's seen him she doesn't seem to be that interested. When I visited him in hospital I went straight from work (which I left early each day) and spent up to 5 hours with him - when they visited him, they stayed for an hour or 2 and then left to do some sightseeing (they have traveled around Europe on many occasions). It's as if his mother looks at him and thinks he's fine and that I'm there so they can now enjoy their 'holiday'. We said they could stay with us to save the huge cost of a hotel for the remaining 3 weeks and his mother essentially said that she didn't want to be stuck in the flat with him 24/7 - I was floored, this is her son! Unfortunately for her, she has to be with him most of the day as he needs constant supervision in case he falls (skull still missing) or wanders off - my work have been extremely understanding but her job was to take care of him while I went back to work. Neither of them were very impressed when I told them they had to be at the flat at 7am because that's when I leave - there was a little grumble but I didn't and couldn't budge. So now, his mother sends his step father over while she sleeps in - he doesn't look too happy to have to be there so early but I've lost patience and don't care - I'm almost tempted to leave earlier but I don't want to do anything to damage our relationship as I will know them for the rest of my life! They have also asked that I come home in good time so that they can enjoy their evenings. Bang goes any chance that I had of getting an hour to myself.

Anyway - sorry, that's a lot more that I intended to write but it's very therapeutic and hopefully if there is someone else in the same situation as me, they will feel a little uplifted that they're not the only one!

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(Sorry it has taken me so long to see this and reply!)

Oh no, that all sounds horrible! I really hope he is doing well, and thinks are looking up. When will they try to fix his skull? I know that, just a few months after the accident, I was still in an awful state. There will be lots of improvement to come!

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Why are you here?

* Is it you who has the brain problem? yes

What *is* the problem? TBI?

When did it happen? And how (if there is an answer to that). 13 got hig by a car approx 30 ft

What are the major remaining problems? mostly short term memory

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Hi ,I am a survivor of a brain aneurysm and still fighting with a pituitary adenoma the reason of provoking hormonal disorder.I keep going because I am lucky of not having major problems , but I feel tired easily, I have blurred vision at times and I suffer of migraine with aura.What about you?

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Thanks, Daisymay.

I fell off a hired bicycle in France, in 2005 (luckily, I had a helmet on - without it, I'd probably have died!). I won't bother telling my story properly, because I have given it above. I am still officially 'blind' (although thankfully, I see far better than that sounds like. Definitely nothing like good enough to drive, but fine for most things), with bad balance, and poor speech (although everyone else says it doesn't sound as bad to them as it does to me). I am missing a couple of years of memory - in the 18 months before the accident, I had moved house and had a wonderful little baby, but I still have no memory of any of that. I never knew why Mr Flump kept bringing QTKT into hospital, alongside out toddler.

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Since my MMR booster vaccine in 2005, I've had brain fog, fatigue, emotional difficulties and visual disturbances including double vision. It's so bad that I had to give up work. My GP sent me to psychology and it was a battle getting any real tests done. When they were done, they were normal and the GP washed her hands of the whole affair.

Last month I went back and mentioned the double vision and only that. Suddenly it was a real problem and I got a referral to Moorfields Eye Hospital. Now I'm going through neuro-optometrics and they're taking me seriously. There's definitely a lesson there; things not to mention.

:)

Lia

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