For the last few years I have been trying to.. I don't know, sort of gain mmy disinhibition I never really had in the first place because iit was the day after my 1st birthday when I had encephalitis so I never really had a social filter in the first place like you guys. I have to have someone to tell me what to say or if I were ever to be able to go out again (I'I'm still housebound with profound OCD) what to do and not tto ddo in ssosocials situations as some of my past mistakes could have got me in to trouble if my Dad hadn't have been there at times, but goodness knows what I would have done otherwise. I'm asking what coping/learninlearning strategies do other E warriors have or uuse?
I now have a book with all the things I had no idea about (so I can revise them), but aapparently I should have known about in there, but sometimes loose pages keep falling out so I'm wondering if other people have any idea what recordable devices you use because disinhibition has made me vulnerable and I'm trying my best to improve and these type of things I have never been used to, but trying to get them to bbecomeb automatically with me what a terrible job it is for me.
I would appreciate any tips advice, coping strategies/mechanisms people may have
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Paula-38
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Just read your post and It really hit me personally, i know I now have extreme empathy in hearing of peoples life’s difficulties, but I noticed you are a true warrior your fighting this by reaching out and want questions.
This is a massive step in fighting the ‘what the hell’ effect of disinhibition.
One thing your post has done and I cannot thank you enough is I suffer from disinhibition and until now didn’t know it.
I think we will be helping each other over this or I hope we wil , as this has just opened a box of fireworks for me . Even after just a few years I’m still learning.
Your determination to find coping strategies is admirable . You really are a brave encephalitis warrior .
Have you ever contacted Headway, the brain injury charity? My family was given their number when I first had encephalitis. They have a great Helpline you can ring for advice about disinhibition .
When I was growing up my parents had heard of them and someone said i has your daughter got learning disabilities? My parents said no. After that I remember my parents talking between them and saying "oh she wouldn't be suitable for Headway - it's not for her", because she can do things that these other people can't do , "she doesn't fit in anywhere" but was about 33/34 years ago now.
Your lovely parents would not have been given much information about what encephalitis does to our brains when you had it 34 years ago Paula. These days encephalitis is recognised as an ‘acquired brain injury’ . Drs know that a person born with no learning disabilities can develop problems after having this illness . The Headway charity supports people with brain injuries , so that’s why it could offer you great advice on ways of dealing with disinhibition now . It’s worth a go. 😊 You can ring Headway on 0808 800 2244
45 plus years ago when I had the same type of encephalitis as yourself.
However, I didn't know that doctors knew a person born with no learning disabilitie develop problems after encephalitis because nobody ever mentioned anything to my parents or I (when I was an adolescent
weird.
Do you have disinhibition HSE_Survivor? I'I'm wondering if people hear have managed theirs and if so how?
I was never formally diagnosed as having disinhibition. But I did lose my sense of tact in my first year of recovery . My Dad had an embarrassing incident in a Drs surgery where I commented on the patients sitting around us in a loud voice. My Dad had to apologise and explain to the surgery’s receptionist that I was recovering from a brain injury . I stopped doing things like that in my second year . Epilepsy, memory loss and fatigue are my main problems.
It probably helped that I didn’t have E til I was 42, so my long term memory still contained social filters . I had a lot of speech therapy, and I think as my brain healed my old natural inhibitions were gradually reconnected .
Having encephalitis as a child your recovery journey would be very different, Paula . That’s where speaking to experts in Headway might help, as they will have spoken to lots of people with long term disinhibition.
I thought that The EncephalitiSociety would have spoken to people with long term disinhibition too ( but apparently only children because it's more common in children) yet I fall under the adult age bracket so it's a catch 22 really. They did mention I hadn't been ttaught how to mix with people from a young age, but when I informemy dad this he said he didn't know that you could teach a child how to interact/mix with others but also there were no services out back in the 1970's like there are today, plus no-no-one knew what was wrong with me or ever mentioned encephalitis again after diagnosis.
I would appreciate more ways they can help me so it will hopefully come automatically to me one day although I can't see that coming off somehow
I had speech therapy at school but it was only for people who'who's voice box had been affected by an illness like cerebral palsy where you couldn't understand what they were saying, you had to ask them a few times. This did not help me with my paranoia which is why I avoided talking until early adulthood after Occupational therapy and CBT together in an OCD ubit in London 26 years ago and then I started gradually to come out of my shell. I didn't know that speech therapy could help with disinhibition I will ask The Encephalitis Society to see what they say about it. All this is news to me! Actually I might ring them up again regarding this topic - speech therapy for disinhibition? Hmm?
Sorry Paula , I think I may have been unclear in my explanation . My speech therapist didn’t improve the disinhibition, she helped me regain speech and her therapy improved my short term memory .
It was the Headway brain injury charity which offered support for problems like disinhibition. I was advised to contact the charity as Headway had a helpline offering advice .
I see. Your speech therapist didn't improve your disinhibition? I'm glad it helped you in many other ways!! So what do you think helped with your disinhibition then HSE_Survivor?
Thanks Paula. I can’t remember a lot of detail from my first year of recovery , but I know I spoke to a kind advisor at Headway who gave me & my family lots of advice and positive coping strategies for the problems encephalitis left me with .
I just wanted to say that I too definitely have disinhibition- I have found that I have learnt from experience with others what to say and what not to say. I have been able to meet people that have had a brain injury so I immediately feel better that I can be honest and tell them any problems if I need to. I still make errors but I realise I’ve done it now without being told.
I agree with HSE survivor that you should speak to Headway or The Encephalitis Society about ways to help you. I understand that your OCD is stopping you but are you able to sign up for some online groups to start with maybe? Is there any help for you for your OCD?
Dear Paula. What lovely and helpful replies you’ve had. I still have disinhibition, and as you know I’ve found out that I’m on the second go round! I had disinhibition as a child but I honestly don’t know how I’ve managed it. I think I hid a lot of me in the past. But this time I can’t hide it. I struggle not to be too ‘blunt’ and it really comes out when I’m tired or been with someone too long, so I avoid those situations where I can. I know how helpful the Encephalitis Society has been, but not thought before of Headway. Have you tried them? X
Hi al!, Sorry for the late reply, but I have just arrived at my Dad's but because of my OCD I didn't have my devices with me they were here at my dads so I'm returning to everyone"everyone's replies now . Thank you Wygella for your empathy and understanding. Because of my paranoia with complete strangers no I'm not going to be talking to Headway but also what they told my parents in the past well a big question mark there. However, I have learnt quite a few things from The Encephalitis Society over the last 4 years as a member, especially in the last 3 years of being a volunteer for them - I enjoythat@. The helpline has been a wonderful resource that until 4 years ago I'd never had before. They let me ask questions about words/phrases or situations I have never heard of before so that's a positive, along with all the virtual gatherings they hold weekly and monthly so with that information I have now, 2 years ago I decided to put it into a book (not because of memory loss) but because I'm just not used to half of the things - it doesn't come naturally to me so I'm trying to find a way where it will do one day but I don't think it will be yet? I mentioned to the helpline that disinhibition doesn't seem to crop up on the Virtual Gatherings, they mentionmentioned that they have come across this in childrewho had encephalitis although they don't hoin the Zoom calls, also me fitting into the adult age group rather than children although mixing with anybody any age who has had it is a positive, just that it'it's less common in adults who have had it, maybe that'why they haven't brought it uo yet on any of the Zoom meetings but I have requested it to be discussed next time I see them . Another thing is they agreed that I'm inexperienced with the outside world due to a few things my childhood days I used to have convulsions and I was never allowed out on my own incease I got lost (delayed memory- linked to my poor processing speed which scored the lowest) - meaning if it'it's been a long time since I seen someone I know but if they change their appearance I will take a while to recognise their unfamiliar faces and new faces, unfamiliar and strange place places accordinto the Neuropsychologist I saw 2 years ago via The Encephalitis Society's marvellous help because I had never seen one before and they suggesteI did and the ability to follow the plot on TV. I'm still on a learning curve but I'm trying to get as much advice how to get these things to come automatically so I may well ask The Encephalitis Society again about this again they will be getting sick and tired of me ringing up so often when they have emergency cases to deal with which are most priority. Because I know them well and they know me well so I will stick with them for that reason. However I stopped having seizures 29 years ago but that same year my profound OCD came along so I haven't had the chance to go out and meet the right people. Another couple of things that came out of my assessment 2 years ago was I scored very low on my vocabulary, ( they think it had something to do with my education history) low scores on mood and attention span.
I seem to be better at putting it into writing than actually speaking verbally, but I'I'm trying to work on having a verbal conversation with people in general.
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Do any E folks here have any idea what this means?
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A comeback is possible
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