10 replies to this topic

[Simba]

One thing i have yet to see talked about in this forum, which strikes me as extremely odd is the TBI and I am wondering why it is not being talked about. My husband has a severe TBI as he has had three major motor vehicle accidents this is not unusual, we have heard of people having TBI's from simple things like falls or basketballs hitting them in the head. I know there must be more people on this forum who are either suffering from a TBI or are caring for someone who is and I urge you to come forward and discuss it. As is the case with my husband and I we both find it the most difficult aspect to deal with as it arises regurlarly in the form of frustration - and yes this is the technically appropriate term used to describe the driving underlying emotion that causes the outburst which have only so far as I have read on this forum been described as anger. This is very dissapointing to see on a site which is for support of disability and the people who are affected daily by disability and I simply can not understand why this is...

When we were able to see my husband specialist (a neuropsychiatrist - who by the way is world renowned for dealing with TBI's throughout the world even though he is based in NZ) he always insisted that the bouts of frustration which are completey UNAVOIDABLE and UNCONTROLLABLE by both the disabled person or anyone else caring for them were due to my husband's TBI. It was described as a volcano that builds up pressure and when it needs to release it blows. I have seen some mention in this forum of problems which sound to me like the ones caused by a typical TBI and people stating that the behaviour exhibited was not appropriate. This couldn't be further from the truth about the TBI's as there is no on-off switch and I would ask people to try and understand the cause so that confusion can be avoided. You don't have to agree with me obviously but for those of you out there who are aware they either suffer from a TBI or know someone that does feel free to message me as developing a support group who will understand is essential if it effects you. Talking about TBI issues is part of coping (particularly for the carer but also for the disabled person to communicate things that can be done to reduce the frequency of frustration - preventitive messures that cut down some of the more obvious trigger points).

Anyway it is part of dealing with my husband's disability everyday and whilst I certainly don't condone the behaviur that does not make it unacceptable as there is no way the disabled person can stop themselves from being affected by it. I would like to hear from those of you who are at times willing to talk about it and would like also to have a support person who can understand where they are coming from and vice versa...

[Tetracyclone]

Simba-

Others have occasionally shared their similar experiences with TBI. On top of SCI it adds great confusion and uncertainty to an already near impossible situation. Did you try searching the forums for TBI, or for "abuse"? The search function here can be trying, but yes, it gets discussed.

We are in there with you all, more than you know, including those of us who suffer mild forms and do not like to discuss it.

[Simba]

Thanks for the tip tetracyclone, no i havn't used the search function yet, hehe still learning my way around here, loads of informtion to look through. TBI do make it harder on top of the other disability issues, so I'll have a look around some more. Can understand some people may not want to discuss this, but am hoping to get some responses either here or through the message system. I know for myself when TBI strikes it is best to talk to people that understand it...

[Millard]

Simba, on 25 March 2011 - 07:08 PM, said:

Thanks for the tip tetracyclone, no i havn't used the search function yet, hehe still learning my way around here, loads of informtion to look through. TBI do make it harder on top of the other disability issues, so I'll have a look around some more. Can understand some people may not want to discuss this, but am hoping to get some responses either here or through the message system. I know for myself when TBI strikes it is best to talk to people that understand it...

Hi Simba,


TC is correct about the searches. After reading the post here, you can go to http://sci.rutgers.e...display.php?f=3, run your search again and there will be more.


Good luck and I hope you fine the information you seek.

[Carolie]

I've got a TBI and an SCI. Let me know if I can help in any way.

Carolie

[ulsterkeith]

at the risk of sounding ignorant what is tbi.....nevermind figured it out

Edited by ulsterkeith, 22 June 2011 - 01:50 AM.

[wheeliebear75]

There is always the possibility of asking about having a section SPECIFICALLY about TBI (Traumatic Brain Injury)? There are quite a few of us with both SCI & TBI (auto accidents are the main culprits of the CNS combo-package) myself included. I and others have shared from time to time about the additional issues a TBI adds to the difficulties of living our lives. Brain injuries don't "heal" so much as the brain reroutes itself & everyone learns to live with & work around the "quirks" (the residual symptoms, the added difficulties in processing & dealing with day to day life).

[Simba]

Good idea wheeliebear75 how would we get one put on forum? Do we ask simon for yet another seperate area or just keep it under neurological issues. Anyone wanting to talk to me or others on here about TBI's and vice versa are all welcome to. Discussing the issues can be really helpful and informative and then the TBI lot could get better support.

SO any idea's all of you on how to set it up?

[wheeliebear75]

I think pretty much just asking Simon how he'd feel about making another area OR just a sub-area of neurological issues.

[Apparelyzed]

Hi,

At the moment there are no plans to open a TBI section in the forum.

TBI is a very specialised area, and therefor people looking for information on TBI would be better served looking in dedicated TBI forums.

Regards

Simon.

[pinkcloud]

The Brain and spine foundation is one I respect and full of specialised experts on there, less of a forum, more very valuble information, I pulled thorough so much thanks to these.I reckon these can connect brain and spine more.

Like neuroscience wards are full of brain and spine injuries, a neurosurgeon operated on me spine..missed spinal cord injury leaving me in unnecessary agony until I meself arranged a referral to a spinal specialist who did.

A brain scan by an opthalmologist (of all people bless his kind heart) showed it all to be normal - lucky seeing as me head was what I landed on.I wonder how many more spinal inuries never get their brain looked at? Interesting point here, thanks simba

Even the experts get confused.

General orthopaedics used to do spine surgery more in days gone past too. Yet dont all specialise enough in this and miss stuff neurosurgeons or orthopods who specialize do....

Then theres neurologists...neuro rehab...spinal rehab...

Brain and spine, a double whammey and I can only guess rarer than sci? to you simba xx