I really wish I'd found this earlier!

[pinkvision]

Hi, I've done pretty well 'recovering' from most PCS symptoms. My health authority are in crisis management and lack many of the basic services. You can get, with an almighty fight, a neurology assessment and a neuropsychology assessment but that's it. There is absolutely nothing else, no sensory testing, no cognitive rehab, no physio or vestibular service, no psychological help whatsoever. The advice was to go online and find methods for free or pay to get private help.

I went private for some and cobbled together a rehab plan from many sources on youtube.

Recently I came across this book-

'The Mild Traumatic Brain Injury Workbook'. By Douglas J. Mason, PSYD.

It has basically everything I found and more in one place with explanations and exercises. From recognising symptoms, to recovering functions, improving memory and learning, increasing attention span and concentration and simple methods for dealing with anxiety.

Just had another flip through and it includes visuospatial processing, language communication sensory processing.

Basically it's got the lot and to be cynical it has everything you'd expect but can't get from the NHS. A hard fact to swallow for some but an absolutely true reality for most.

[New_beginning]

Thank you for sharing thats the 2nd book on my wish list now, we have clinical psychologist covering this along with behaviour side of things, but i know we wont have service forever, so this be great just to reflect, good reminder points when needed to have at hand.

Thank you again for sharing.

[pinkvision in reply to New_beginning]

Love the way the book just confirms all the training I cobbled together from info on youtube. Training attention and concentration by doing child-like drawings, balancing then using meditative focus to reimage them in the mind. Doing the abc's and 1,2,3's pronouncing the words like in infant school. They say treat the injured brain like that of a child even if you think you are an adult, because you find strange gaps in that child memory and retraining fills those gaps. Your child brain is the scaffolding for the rest of your life and once it's broken everything collapses. Amazing stuff, highly recommended, rebuilding the scaffold of the mind.

[New_beginning in reply to pinkvision]

Yes so true, we used my toddlers learning, and play objects first four months, i.e naming colours, giant floor number puzzle, naming animals, drawing . We have luckily got totally pass that stage now, but aware with high risk for Stroke and Seizures in future, who knows what will happen or not

[Pairofboots]

Hi, be careful of books, they can be helpful, but their main purpose of them is to make money for the author. They are not written for ultralistic reasons. The written word doesn't always cover the nuances of the therapy, and misinterpretation can occur. But if it helps I wouldn't say don't use it.

[pinkvision in reply to Pairofboots]

Hi have only just recently come across this book. I had already used, successfully, many of the retraining methods he describes, I just wish I knew about it earlier. I hope he makes a fortune from it and maybe the NHS should read it too, they may learn a thing or two. (need to get my cynical thinking about the NHS sorted, but I just hate them for abandoning me to my fate in the early days)

[Pairofboots in reply to pinkvision]

I can appreciate your views, you have identified the shortfall in essential services. I have a BI, but I was employed by the NHS as a RN(MH). I just would suggest caution. A book doesn't replace the therapist (or maybe in this case it does). I studied many theraputic theories.

The NHS has been strangled to near death for over ten years, you would think that the Tories might have realised the value of it, but sadly they have blundered through private contract after private contract, all have failed, but they are still blind, and just want to cream off much needed funding to their mates.

I wish you well.

[FlowerPower62]

Hi Pinkvision, thanks for this. I shall definitely get it, as you have recommended it, and you are my guru! ☺️ By the way, did you ever get How to feed a Brain, by Calvin Balaster? I thought that was good. X

[pinkvision in reply to FlowerPower62]

Sorry no I did not, will look it up. Thanks so much.

[Braindeadhead]

Hi there thank you for sharing this. I'm definitely going to look into getting it, or if it's not too late, put it on my Christmas list. I too was left to my own devices by my health board, but things turned around for me when a year later my health board started a brain injury service and with my family's persistence I managed to get referred to it. However, the major parts of my recovery I had to sort myself. I didn't realise my problems were to do with a BI so that made it confusing and difficult. I am a persistent and obstinately independent person and I drove my family mad with that, but unknowingly it worked. By the time I got referred to the BI service I was better than I had been. I do believe it would have been better if they had seen me at first as it would have helped them understand how bad I actually was, but as they've only seen me after my hard work they seem to think I only had a mild BI despite what my husband and I have told them. I couldn't even speak properly at first, as well as huge problems with cognitive function, and many many more. My young family were involved with my initial assessments with the BI service which has helped them understand why I am different and accept I can't do many of the things I used to do. I am 4 years into my BI

[chuncho]

Thank you. I will buy it as in Italy I had the same experience with the NHS. Clearly, I also agree with the other comments: the best would be to find a good "person" or service not only a book!

[pinkvision in reply to chuncho]

Too true, but so hard to find.

[pinkvision]

Yep that's a common story. It all seems a bit pot luck depending on you health authority. My BI service refused to see me when a GP referred me to them, they said there's nothing on the CT scan! Odd they should know that only 17% at best of BI show up in any kind of scan, except fMRi.Behavioural optometry was my biggest saviour, I had multiple visual processing issues, hot on the heels though was attention and concentration training linked to repetitive activities. I made up a mindfulness based program to do it. Weird but I later I went on a 'real' mindfulness course and it was no use at all. I went back to uni to do a masters in mindfulness based approaches. When I applied I had to write an essay on why I wanted to do it and what my thoughts were. I wrote it straight and said official courses were absolutely no good for BI rehab, they were intrigued, a bit shocked and offered me a place. And yep these current courses offer some a little help but it could be so much better and offer everyone a chance at rehab. I'm going for it, there is a method to be developed and hopefully it will come to light in a couple of years.

Well that's done me in! need a brew.