'diffuse axonal injury' mental issues & unwarrante... - Headway

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'diffuse axonal injury' mental issues & unwarranted aggression

Hello Everyone,

My name is Markus and when I was 25 (4 years ago), I had a very serious motorcycle accident to cut a long story short --> months in coma, rehabilitation centre I checked out of because I'm one of those weirdos that 'needs' his own space and years later I'm still awake first thing in the morning, but face a daily 'mental strength plummet' which can and does lead to occasional aggression and somewhat violent outbursts.

With the unfaltering support of my partner Donna, I've decided to 'own up' and face the consequences of my actions.

I keep brushing off the effects of my 'traumatic brain injury' by not facing the music and either ignoring the pain/difficulty I've caused those closest to me and those in my environment or finding lame excuses that I whole heartedly believe are true when in reality I'm talking out of my a*s when what I really should be doing is getting help.

I'm the type of person that doesn't like the stigma of 'help' and always felt that a 'weak' person gets help and I'm not going to be 'weak'.

Truth is, I, along with many brain injury survivors, need support/help and I'm very genuinely hoping I find that here.

- Markus

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I Markus my daughter who is 25 suffered a severe diffuse axonal injury and bleed on her brain stem in Jan this year, it is not a weakness to ask for help it is your right to get and receive any help you require, it is a battle to get what is needed once in the community, contact headway they have a lot of information to help and advice you. Maybe a referral to a neuropsychologist , they help you to understand your difficulties and give you coping strategies. If you want to private message me please feel free all the best cal x

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I genuinely wish your daughter all the best and will be thinking about her :)

I was exactly her age when I had my accident with the exact same traumatic brain injury (severe diffuse axonal) and my wife was approached while I was in my coma to consider palliative care and given forms and leaflets.

Doctors and specialists 'professionally' wrote me off, but I came out of my coma a few months later and after a brief time in Walkergate (rehab) I'm doing pretty well.

I had to learn to walk again, speech therapy and even holding a fork so when your daughter graces you with her presence again please remember that she will have PTSD and no understanding of what's happened.

Time awareness is something I still struggle with and it used to be very bad to the point where a day waiting for something in my damaged brain felt like forever and the frustration of feeling this way led to outbursts that of course affected my wife so please Cal when she's back home and possibly mimics my behaviour take a breath and understand that she thinks the world of you and doesn't mean what she's saying to you and/or about you.

Stay safe and positive

Markus

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Thanks for sharing that...how are you Markus?

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hey again Cal, I was thinking about you and your daughter today and wanted to ask you how she's doing?

hope you're well :)

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Hi Markus sorry I didn't reply things are really quite busy still for us. How are you? My daughter came home middle of July her diagnosis at the time of her accident, we was told if your going to have a brain injury this is one you don't want, they didn't think she would live. She spent 5 months in rehab at the beginning she was unable to talk was fed via ng tube unable to sit,unable to walk, the outlook was not good, 9+ months down the line she is walking still with problems and spacticity, eating, talking, memory problems amongst other cognitive issues, but we are getting there I understand it's still early days for brain injury, but I will never ever give up, she has a brilliant boyfriend who adores her, whom she met since her injury who gives her lots of support and help. We pay for private physio and aqua therapy, she has OT by family members and sees a neuropsychologist weekly so still working hard so she is able to live a positive and fulfilling life xx

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That's incredible Cal, I am super happy to hear she's surpassing expectations :)

The medical team at the 'RVI' hospital that I was helicoptered too in a coma is literally renowned for its brain injury expertise. They called my wife in for a morning meeting which she attended where they (top specialists) showed her images of my damaged brain and subsequently told her in stern tones that judging by the imagery, the best thing for me will most likely be an 'assisted living care' facility (care home) and followed all this by asking her to sign a document. She did not believe my fate was to be in a 'care home' so she declined their recommendations and gave me more time.

With the hospital therapists and occupational therapists she arranged for me to be transferred to a rehabilitation centre where I'd live and potentially one day attend a therapy program.

When I first arrived, I was still in la-la land and like your daughter I wasn't walking, talking, eating (I'm presuming like-me she had a tracheotomy) and I was in this confusing world of kind of conscious, but I have absolutely no recollection of that time.

I was being hoisted onto a ceiling cable thing and mechanically moved to bathe (which a nurse did for me), but after some time I was getting better bit by bit and they then had my p*ss bag, poopie thingy and catheter removed (leaving me with a larger than life hole which if you drive a car/van you could park in).

Then agua therapy, speech therapy, occupational therapy, physiotherapy etc and before long I was walking, talking (a little too much), eating on my own and actually telling anyone that would listen 'let me the fu*k out of here!".

Against 'professional/medical' opinion, I was taken out of rehab on June 1st (a day before my birthday) and driven home. I was in a wheelchair for a few weeks, but everyday my wife slowly helped me train so that I could live my entire day without a wheelchair. I walked a little then a lot and now I'm running.

My mother is from Spain and my dad lost his cancer battle 6 1/2 years ago, but he was German so I've always spoken 3 languages natively and yes speaking with speech therapy was focused solely on English so it took longer to speak Spanish and German fluidly, but now I am just the way I was.

The only thing that I'm dealing with daily is nerve damage leading to a weak, pretty useless left arm and chronic mental fatigue that means I'm myself & 100% for the most part mentally in the morning, but come on 2pm I start to really fatigue and lash out sometimes because I feel unable to control my surroundings.

You still haven't told me your daughters name Cal and I'm assuming its because you think I might be a scam or some creep lol, but genuinely you saying to me that it's nice to speak to someone going personally through the same thing - it's the same for me. You are the one and only person I've spoken to about my situation and your daughter having the same 'brain injury' is seriously a breathe of fresh air. The only other person I know of with a diffuse axonal injury is Jules Bianchi the F3 driver, but after a 1 1/2 in a coma, he passed.

His injury was from a car crash - mine from a high speed motorcycle crash so upon hearing of his death I wasn't very hopeful for my recovery, but hearing about your daughter really inspires me to keep going.

:) If there's anything at all I can help you with please ask and if 'mystery name' would like to talk to someone that fully/directly understands please give her my email: winter_markus@yahoo.com

And equally, if as her mother you ever feel lost for a second about her behaviour or mental state please feel comfortable about reaching out :)

Caio,

Markus

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Oh wow you sound to be doing amazing, your injury/recovery sounds like a mirror image to my daughters, the reason I don't say her name is that I joined this site whilst she was in hospital and without her permission I don't feel it is right, it is only since she came home and is making improvements that I am able to discuss her injury I was just too traumatised and heartbroken, thank you for your kind words and email I will pass it on to her and also keep note of it myself, I hope you keep making improvements and the fatigue gets a little easier keep in touch cal xx

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Thank you for thinking about us it really does help to hear from people that have been in a similar situation to us love cal xx

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Well done Markus, in taking the most important step towards managing your condition. Denial can be such a waste of life if allowed to continue, and some of us remain in denial for years, even after relationships have broken down.

If you haven't already, please contact the Headway helpline (0808 800 2244 - office hours/free calls) for printed information on the after effects of DAI and how to access support.

Good luck in going forward...............

All best wishes, Cat x

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thanks Cat :)

I feel like I was being rude and unthoughtful by not asking your daughters name.?.?

Just so you know, I also have a 'brachial plexus' injury which is basically nerve damage which caused my brain to 'forget' how to communicate with my left arm so for 2 1/2 years my arm was pretty motionless, but through therapy I can move it as I type and while I don't have normal movement, like i said earlier, Time is a great healer and dependable partner in recovery

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Markus, it was Calrich's daughter who had the accident ...................understandable mix-up ; Cal - Cat !

Have a good Sunday...... x

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Hi Markus just wondered how you are x

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Hey :)

It's very selfless and considerate for you to ask me that so thank you!

5 months or so ago after years and years of the inevitable, I left my wife and bestfriend after 11 years. It hurt so much and still really stings even writing this, but I am 30 now and there are chemically/biologically speaking, things I simply should not live without so I called it a day.

I am living on my own in Cordoba (2 1/2 hours North of Sotogrande where I own a house with my ex and she still lives in) and because I no longer have a really great job that paid quite well, I can only now afford a 1 bed/1 bath apartment living on my own.

But, I am managing and while I have bad days I can also make some good ones so I will get there in the end I think.

How are you doing?

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I’m sorry to hear that, but sometimes it’s for the best, you have a roof over your head so it’s your castle no matter the size. I hope you have some support, no matter how old you are support is still needed. We are getting there still doing therapies for her walking, memory getting better etc but as you know it is a very very long road, as long as I’m on this planet I will never give up x

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She is out of this world fortunate having you :)

Walking will come back to normal - just don’t ever accept ok, only perfect

I didn’t walk as you know for quite awhile, but now I am 100% again and I run too

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Yeah we will keep fighting for perfection and she is determined. You have have done amazing to say we’re you have come from x

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Thank you - I’ll be happy when I get myself back and even better

Being so stubborn and reaching for the top no matter what stands in my way is what I feel and am told has gotten me this far

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Keep going you will get there, keep in touch let me know how your doing x

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vale okay :) thanks again!

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Hi Markus hope your ok. I just wondered if you could give me more information on DAI please.

Zoe.

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