I watched most of the programme last night about the doctor who founded the Paralympics and found it fascinating.
The thing that kept filling my brain cell was how do people cope physically and mentally with life changing injuries? Especially emotionally.
Does anyone have any first hand experience of this, yourself, a friend, loved one?
I am afraid that I am not sure how to create a link, but posted this last year. I am afraid that stuff hasn't really changed a lot since then:
"I know that I have whinged about this before, but am still fed up, to say the least. I had a cycling accident a year ago and gave myself a "very severe" diffuse, axonal brain injury (I also broke my back, neck and wrist). Whilst making a good physical recovery (I ran a 10k, yesterday - albeit, not fast), mentally it is very slow progress. There is loads and loads that I can't remember. I also cannot concentrate at all and need a couple of sleeps during the day. I have not worked since the "bump" and despite always complaining about work when I did do it, am missing it very much (for lots of reasons). I used to be a solicitor (sorry!) but now receive disability living allowance. I am also registered as partially sighted and walk with a white cane (not to mention the hearing problems). That said, I know that I am lucky to be able to do what I can and to have a very loving family. "Always look on the bright side", eh?"
PhilipAllen wrote (see)
Hi I am afraid that I am not sure how to create a link, but posted this last year. I am afraid that stuff hasn't really changed a lot since then: "I know that I have whinged about this before, but am still fed up, to say the least. I had a cycling accident a year ago and gave myself a "very severe" diffuse, axonal brain injury (I also broke my back, neck and wrist). Whilst making a good physical recovery (I ran a 10k, yesterday - albeit, not fast), mentally it is very slow progress. There is loads and loads that I can't remember. I also cannot concentrate at all and need a couple of sleeps during the day. I have not worked since the "bump" and despite always complaining about work when I did do it, am missing it very much (for lots of reasons). I used to be a solicitor (sorry!) but now receive disability living allowance. I am also registered as partially sighted and walk with a white cane (not to mention the hearing problems). That said, I know that I am lucky to be able to do what I can and to have a very loving family. "Always look on the bright side", eh?"
Oh crikey, sorry to hear about your accident. A friend of ours came off his bike a few years ago and suffered a brain injury, he has said many of the same things as you. He finds noisy environments and harsh lighting impossible and the concentration thing also.
Can I ask what you do to keep yourself as mentally positive as possible, and how do you fill your time? Is reading possible? Music?
(Please feel free to tell me to bugger off if I'm being too nosy, I'm just really interested)
It is a bit of a "challenge" filling time usefully/entertainingly etc. I can read a bit, although vision is rather a problem. For this I have found Kindle/iPad to be a big help as I can increase the font size. I find that nowadays it is hard to interact with others so I tend to shut myself away and think about stuff round in circles. As a result, I have become quite interested in some philosophy type stuff!
I can't realy watch TV and therefore tend to listen to a lot of music. I find that my taste in this respect has changed. I, subconsciously, crave mental stimulation yet at the same time find that I can't follow/relate to/sensibly interpret lyrics. For both these reasons, I tend to drift towards "complicated" instrumental music - usually meaning "unlistenable" jazz. I also try to play the flute - because I have time to practice I am, apparently, making some progress. I only took it up shortly before the accident and had to re-start afterwards. Two years down the line I am now working on Grade 8!
You are not being "nosy" at all and thank you for your interest.
I do find it interesting (this is still me, just my log in at work now).
I remember Richard Hammond from Top Gear used Lego to help with his recovery from a brain injury.
Another one of our friends had a brain injury when he got hit round the back of the head with a baseball bat by someone who then stole his vintage car. He was a very good musician but now finds that a struggle, but he's trying. He can't play with his band anymore but does use music as therapy at home.
I lost my job, home, many friends and potential as a runner when injured whilst in the RAF - not on the scale of Philip though and a long, long time ago now.
Philip - have you thought of a new area of study? There is a lot of support, financial and practical, available for disabled people in Higher Education and you don't have to do it for anything other than your own interest and enjoyment.
I have not tried Lego yet but havng a 7 year old son, there are plenty of toys to choose from! In addition to Richard Hammond, I have found James Cracknell to be pretty inspiring (I think that our respective wives have been in touch).
Thanks for the suggestion Little Miss Happy. Having been a university lecturer and (while, no doubt, undeserving of the role) head of both a barrister's and a solicitor's post-grad course, I have limited "faith" in HE institutions - (If they appoint someone like me to do a "grown-up" job???). More seiously it is a good idea and one that I have thought of. I think that concentration would be an issue at the moment but who knows what the future might bring?
Phil - First up, congratulations on achieving the 10k. That's a great achievement. I have a syndrome as opposed to having had an accident but life's had to change a lot too. My concentration and memory have been greatly affected.
I find like exercise, the less I do the harder the worse my concentration gets so I try to make plans with scheduled breaks if I'm actually trying to concentrate and days off. Though even that is sometimes too ambitious. I've even had to rewrite these paragraphs about 10 times because I'm still not sure it makes sense
For the down times, can you still see colours okay? A friend suggested Mandala colouring books to me. The pictures have patterns in them and though I don't love them and I'm not an arty type, it's just another way of doing something.
Thank you. I also make daily schedules listing, for each hour, what it is that I want to do (including rest periods). Overall I think it helps. Later in the day, however, when I get more tired, my mental state gets clouded and I tend to see the schedules as less valuable that they really are (AKA total b*llocks). Anyway, I am sorry that my "head bump" seems to have become a big topic in this thread. I know that there are lots of folk out ther who suffer misfortune and lots of it is much "bigger" than mine. I don't want to be some kind of martyr.
I don't think you a martyr either, nor though do I think anyone is treating you like one. It doesn't look like you've posted on the forum much though and it can seen kind of weird though if strangers all give you advice/sympathy/comments. I get that...
I think I can sort of look at this from another perspective.
I had juvenile arthritis as a child - I was in a wheelchair on and off (mostly on) from the age of eight up until my early twenties, when it finally went into what seems to be a permanent remission - I hope! So my life-changing experience was re-gaining health. Once I'd re-learned how to walk, I went from being confined to a wheelchair to being relatively healthy (I have other health issues, but best not get into that!). And honestly, it seriously messed with my mind! I didn't know how to live like a 'well' person. I'd never had true independence, I'd missed out on most of the typical teenage experiences, I still had a mental image of myself as the fat kid in the wheelchair... it took a lot of getting used to just to be able to stand up when I wanted to. I'm not sure if I'm making a point, or just rambling...
A friend of mine was badly injured in Afghanistan, although he's making good physical progress he struggles more mentally. I have to say I think the people he's surrounded by make all the difference, as well as meeting other people and seeing their progress. He certainly has an amazing attitude towards his life. It's a huge inspiritaion.
Blimey Booky! Seeing you now I would NEVER have guessed that!
How did you cope with the people who wrongly assume you're mentally retarded? I bet you have a far better perspective on disability than most.
I think that was one of the most frustrating things - being spoken to as if I had the mental capacity of gerbil. Most of the time it was strangers who were genuinely trying to be nice, but had no idea that wonky legs have no bearing on cognitive function. More often than not I'd just ignore it, but there were some people I'd see regularly who needed setting straight. And then there were the people who were both ignorant and nasty with it. Someone actually moved me out of their way in a supermarket once. They were treated to a carefully worded explanation of why, in my opinion, they were a twat
In response to an earlier part of the thread, I am not at all put out by anyone's, helpful, comments. Quite the opposite - they are very kind. I was just worried that I might have been coming over as "attention grabbing".
My experience of this sort of thing is working as a physio, and also as a researcher/admin person on a stroke project. In my experience there's a whole complex mix of things going on as well as "just" the physical consequences.
To give a few examples, people may be concerned that they're not fulfilling their responsibilities or role within the family (one stroke patient was the carer for his wife who had MS), others may feel rather lost as they can no longer be the breadwinner for the family. In other situations I've had to discourage the family from helping too much as this made the patient not try to do stuff that would benefit her rehab. It's often the case that the whole fanily have to get used to the change in roles etc as well as the patient. Plus there's a lot of stuff about self-efficacy and stuff that you may well have come across in educational studies.
I rathjer like the life thread model
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