Slowly it becomes clear!: I have been struggling to... - Headway

Headway

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Slowly it becomes clear!

Padmeister profile image
11 Replies

I have been struggling to in my brain damage following a motorcycle RTC, my friends and family encourage me to give an account of this in a book or some short story. My failings including internal organ failings are not for really sharing with others. I lack the ability to pit into words " The Molecular Biology of Brain Injury."

In part I remain the sum of my life experiences and that has been interrupted, albeit I can still recall much of who I was and now, it has taken me almost 17 years of investigation to realise I can only be me now, I do believe I have come to an uneasy acceptance that this is who I am now.

I am unsure if this makes sense as there is much to impart?

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Padmeister profile image
Padmeister
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11 Replies
cat3 profile image
cat3

You're making sense Padmeister. I guess it's a matter of 'Better late then never'. And certainly, 'only' being ourselves is what we're stuck with because, as you'll know after 17 years, being who we used to be just isn't an option.

With acceptance, at least we can achieve realistic goals ; it's taken me 6.5 years to get to grips with new limitations, and yet recently I've tackled projects which I'd accepted as beyond those new limitations...……..so never say never !

I've given up researching my condition as no one but myself can know what I might be capable of at any given time, so I concentrate on the reality of the here and now, resting on bad days and making the best of the good ones.

Has your mobility been badly affected since your RTC ?

Cat x

SillyPhil profile image
SillyPhil in reply to cat3

Cat, I just typed a huge reply to you... then the website 'crashed' and lost it. Nooo! But It was basically agreeing with you on the 'giving up researching our conditions' thing. Dead right. We can get too bogged-down with it. Then your whole life becomes about brain damage. Even this site I have to limit, otherwise I get too sucked-in and involved. And upset. I wish I could help others. I've had 20 years of experience. And am told that I have good insight, self-awareness and a good way of explaining what brain damage feels like. I should write a book. BUT then my life would be all about brain damage again. So I fear that I can't help. And THAT makes me sad. So many people having head injuries. It makes me cry. I wish you well x

Padmeister profile image
Padmeister in reply to SillyPhil

I hope this finds you well. I have recorded multiple bilateral foci of T2 white matter hyperintensities, bilateral hippocampal atrophy, generalised parenchymal loss, the brain stem and as a result of Pons area damage the peduncle from the cerebellum creates multiple reasons for impaired perceptions of movement, balance plus the sensation of being vertical is some reason I struggle, the L5 spinal injury and my fractured ankle further complicate this, my ear canal (left) is compressed and the amount of air reaching my inner ear again confuses balance

I was a motor vehicle engineer and MOT tester and my interests were diverse and knowing what once I could do, makes it a hard and bitter pill to swallow. I have resigned myself to a simpler life now, there are no answers to the questions I have a wheelchair and a carer to assist in daily living, as I do not have Alzheimer's the hippocampus deficit only mirror this condition. My tonic colonic epilepsy again a wheelchair is required outside as I can transfer when I am required to so. The homonymous hemianopia and 3rd nerve palsy and the visual loss of left hemisphere sight and the loss of 3D vision again complicates my abilities to achieve things, like shaving so now I have a goatee as cutting myself is avoided. I know to much about brain function, however if it was not for bookmarks on my search engine I could not recall a thing, still nature abhors any vacuum and now universal laws have me conflicted. This could to long and I may have got lost in my response.

SillyPhil profile image
SillyPhil in reply to Padmeister

No worries mate. L

I lose my train of thought all the time. And I've got little scribbled notes that I now forget what they are about. Life is hard isn't it? Keep battling. I gotta go.. Wife taking me out for a few hours...

Padmeister profile image
Padmeister in reply to SillyPhil

Thanks for understanding, enjoy your outing. I do not come here often and only this time I had to share, as I though the "Molecular Biology of Brain Injury" would open a deeper response, I have discovered Neurotransmitters and their receptors, excitotoxicity and the cell death after acute Brain Injury due to the ongoing effects of neural and synaptic pathway failures, the connections made between white and grey matter and the loss of other areas of the brain. This is a minefield and I apologise for my comments, I just wanted to share my experiences since 2002.

Far too much time I have spent on defining why I am this way, it has been said. I think, therefore I am, but what way of thinking defines who I am?

Jaxs050783 profile image
Jaxs050783 in reply to Padmeister

I too have left sided hemianopia due to TBI. ( infarct to right optical lobe).

Padmeister profile image
Padmeister in reply to Jaxs050783

I'm sorry to hear that, mine is due to Intracranial hypertension a build-up of pressure around the brain. I have Kaleidoscope vision as a result of that pressure in both stretching my oculomotor muscle and oculomotor nerve, causing blurred and double vision (both horizontal and vertical.) Then the matter of mydriasis and the sensitivity to light. The effects of this is the flashing of bright lights (like starlight) in my left eye and the black dots looking like the London tube map in black and white silhouette form. This combined with my perception of my environment has slowed my life even more than my brain injury effects. I used to enjoy a trip to the cinema and now I am unable to appreciate this as it moves faster than I can process and the distortions my brain receives. The fact my left eye lid does not close fully again in low light I become less likely to see all and the dangers there could be there,

Jaxs050783 profile image
Jaxs050783 in reply to Padmeister

Similar to mine, pressure due to bleed.

I had third nerve damage diverted eye drooping eye lid, but this resolved itself.

I get flashing in my blind side. Occasionally I get facial recognition problems.

Have u got macular sparing?

Padmeister profile image
Padmeister in reply to cat3

Sorry cat I replied to Syphilis instead of you, I think I am half a sleep at this hour. The remarks are the response to your post as well as SillyPhil's. On a funny note the spell check here has SillyPhil as Syphilis as the red underlined suggestion has that as the only option .

SillyPhil profile image
SillyPhil in reply to Padmeister

Syphilis - Ha!! Love it. Mate, I've been called worse. But not often. :-)

SillyPhil profile image
SillyPhil

Mate, I had my accident 20 years ago and I still struggle to accept the new me. It's not that I don't want to accept, it's just that I still feel that I can still do stuff that I used to and I am repeatedly reminded by my poor brain that I can't. Keep fighting. And good luck.

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