Frontal Lobe Paradox: In 1996 my 18 year old son... - Headway

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Frontal Lobe Paradox

Mummily profile image

In 1996 my 18 year old son fell 40 feet and as well as many broken limbs he had 26 skull fractures . Remarkably after 2 weeks in hospital he was discharged home ( no rehab ) where he spent many months recovering before he started some casual bar work ( he had been going to to university) . He appeared to everyone ‘normal’, however visits to consultants to establish what he should be compensated for , showed amongst other things frontal lobe damage and the likelihood of executive dysfunction. He put the report aside, regarding it as a means to ‘build his case’. Since then for 25 years , life has been a struggle - loss of friends, broken relationships, loneliness, alcohol misuse, depression and anxiety, financial problems, chequered job history (no job for longer than 2years ) long periods of unemployment, self harm incidents .

He returned to live with me 8 years ago after his relationship with the mother of his child ( now 10) broke down.

I am in effect his ‘carer’ supporting him financially and emotionally. It is a continuous roller coaster journey for him ( and me) as he seeks what HE sees as success - a well paid job with status ( like his elder brother!) financial independence , a place if his own and a girlfriend. I just want him to be happy !

I could write at length about how his unrealistic expectations, lack of motivation , anxiety, fatigue, insomnia, use of alcohol and diazepam , inability to plan or stick at things impede his progress.

I am exhausted with all the things tried - medication , counsellors, NLP, CBT/ join gyms/

clubs, take a simple job, doing voluntary work, exercise, night classes, OU courses etc..etc………his default is bed/ lying on the sofa watching TV with the occasional trip to the pub to drink 3/4 pints , talk to the bar staff and other lonely men to return home ‘changed’ by the alcohol (but ‘I’m not drunk’ )and sleep.

A few years ago after a dispiriting appointment I had with our GP in which my request for a referral to a neuropsychologist was met with derision , I contacted Headway.

We went together and I felt AT LAST! Someone who understands! He went along with the visits to the psychologist and the rehab consultant , had the assessments for memory and some cognitive functions ( which he proudly said ‘I passed’) …. but like other things he didn’t stick with it as he didn’t believe it was helping.

Essentially…..,, he doesn’t seem to accept or want to believe his brain does not function like other people, he wants to be ‘normal’.

I have read recently about the frontal lobe paradox - ie the injury itself prevents you recognising you have a brain injury. I wonder if this is what prevents my son from being well and until he accepts his is ‘disabled’ condemns him to this permanent perception of himself as a failure?

Any thoughts / advice/ shared understanding I’d appreciate.

9 Replies

Hi there, This sounds very familiar. I suffered a bi due to a rta. Car V bicycle, I was on the bike. Was only unconscious off and on for a day. Was very aggressive and verbal during the night along with being sick.

In the morning presented with paperwork to sign and was told to go home. Spent the next weeks I spent asleep at home .

Everyone around me was concerned yet I was just getting back to work.

Work refused to have me back and insisted I had medical help. This went on for a year. Learning to speak coherently and walk with the aide of sticks.

The upshot being after a year I had mri and cat scans and was diagnosed with moderate to severe bi with front lobe damage along with brain stem a no shake syndrome.

All I thought of the diagnosis was great when do I go back to work.

It took 8 years of fighting work to realise my limits and I was never returning to work. Although I knew the damage I had sustained I don't think I really understood the reality of the situation. Also how much I had changed.

23 years later I am more settled in the new me. I know I was lucky in that my wife never really gave up on me , Yes we separated for a while but we have rebuilt our lives. No its not been an easy ride and I know I'm lucky.

Hope your son finds peace in himself.

Pax

Mummily profile image
Mummily in reply to paxo05

Thank you for responding. I so wish my son could come to terms with his situation … I won’t be around for ever and I do worry about what he’d do without me. What made you finally accept your limitations?

paxo05 profile image
paxo05 in reply to Mummily

What really made me look at my life was when me and my wife split.

Being away from my 3 daughters as well made my life cave in.

I actually started listening to others and realised my perception was way out.

All those people couldn't be wrong . I realised what I thought and what was actually happening were miles apart.

It took time to admit what I was like to myself. I also stopped coping and started to adapt my life.

There's no easy fix and it is a painful process. After all who really wants to admit their faults.

Like I say I was lucky my wife still wanted the new me and fought to get me help.

Accepting you are no longer the same person is the starting point, then the hard work starts adjusting to the new you.

Pax

Hi Everything you have said there I can relate too . It’s as if I have written it . Not all of it and it seems your son has had some life my son has had none . His 23 years old and stuck in his bedroom his never had a job or relationship!! He has been like this since he was 13 and had a brain abscess. Two craniotomys and frontal lobe damage . I f do not know what to do or how to help him . I did call headway but I didn’t get much help .

From a very tired weary mum

Mummily profile image
Mummily in reply to Harrys

I am so sad to hear your story. My son has just returned to bed to sleep and escape his depression and loneliness. I so often despair like you about how to help him. I grieve for the life he should be living and sometimes have guilty feelings thinking about my own life passing by unable to do the things I’d like to be doing …, but it’s never resentment because I love him dearly. If seems there’s sometimes a light at the end of the tunnel and then it goes out again. I do know it’s much worse for him though. I’m sorry that Headway wasn’t helpful , when I spoke to them I found their understanding comforting. They suggested I join a support group but I think I’d be amongst parents with far more disabled children so now I rely on friends to talk to .. but I worry I wear them out and leave them feeling helpless too. It’s a hard life being a ‘carer’ . … does make you wish for miracles!

Hi, the nearest experience I have had with this outside of my own early recovery is from nursing patients that had fixed delusional ideology. Direct denial of their belief was pointless, and it took years of careful compare and contrasting their perception to achieve a slight shift.

In relation to myself, in the early days, others could see how disabled I was way before I did. I expected to be back to "normal" in a couple of weeks, that didn't happen, maybe a couple of months, and so on. Attending Occupational Health, they spoke about me taking ill health retirement. This was when I started to acknowledge that I was not going to get back to the old me. That was when I crashed. All meaning left me.

Medication helped adjust my mood, and a lot of input for the rehab team helped me accept my predicament. Even now, eleven years on, I find it easier to be on my own, in my own space, because I don't have to try to try face reality.

Acceptance means I don't have to fight to be the old me, but it doesn't mean that I don't dream of the me I once was.

Sorry I don't have a formula of how to help your son, or make things easier for you. I just have insight from the other side. 🍀

Dear 'Mummily'. I dont know much about the frontal lobe paradox. However, I relate to your son's story and to yours.

I recieved a head injury aged 14 in 1995. Including frontal lobe damage. Lived with it since. Lots of similar symptoms.

Now I am married, have a mortgage and full time work. Life is still harder than it should me. Brain damage is for life so life will always be tougher.

My advise for your son is:

All the things he wants to achieve like a job or a flat are achieved over time in stages. His psychology apts help prepare for eg starting work and then some coping strategies to use when in work. They are a building block towards his goal. This is why he needs to go back to them. Lots of things we have to do in life are building blocks toward larger goals. It's just really hard to see that when gripped by our anxiety.

Keep working with Headway.

Have his hormone levels checked. I found out after twenty years that I had a damaged pituitary gland. It stopped producing certain hormones. Treatment for this made a difference. Something like this might help him manage or reduce some of his symptoms and thus help him make a little more progress. Giving him some more independence and taking some of the pressure off you.

I regularly say to people caring for people with brain injury- by far the best thing you can do for us is to look after yourself. Where would we (He) be without you.

Regards

Obi-wan

Mummily profile image
Mummily in reply to Obiwan

Thanks for this. His pituitary was affected , which means he injects growth hormone daily , so you have any other treatment ?

Same treatment for me plus another h.r.t. treatment.

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