Mindfulness and Stroke; A personal story of managing brain injury. By Jody Mardula.
Half of the book is written by Jody who had the stroke. She was the director of the mindfulness research centre in Bangor University, a mindfulness teacher and psychotherapist and the other half by Frances Vaughan a clinical neuropsychologist.
Jodi knew the inside of the mind from a professional perspective and describes what was happening inside her head. As I said above you could have written them yourself.
Buy one for yourself, another for your GP and another one for your neurologist and make sure they read them at least once a month.
Thank you for this, I'll search for it. I have read a few book, snippits from them are relevant but a lot of them go into detail about the brain itself. I have just started "You Look Great" Strategies for Living Inside a Brain Injury, by John C Byler. So far it seems to tie in with my feelings and peoples and GP's reactions, (totally not getting what I'm saying).
Getting GP's etc to take you seriously seems to be a common issue with many people. I had this with my original GP practice. Then I changed practices about 10 months after getting the head injury. The new doctor did take it seriously and got the ball rolling and everything fell into place after that. You still need to put in a bit of a fight at each level. I did see if I could sue my old GP practice and a solicitor looked through the issue and said that the case is very good but there was a hole in it which would probably lose the case. It was that I had not made an official complaint as it is an option in getting the correct treatment. What I would say is that if you are getting issues with your GP make an official complaint and see what happens.
There are many books that describe brain injury from various points of view depending on the brain injury and the battle it took to get somewhere to get recognition and a path to dealing with the injury. This is only the second brain injury book that rings a chord with me. The first was 'the ghost in my brain' that followed the steps it took to deal with visual problems after a brain injury. This book however has descriptions of exploring the internal landscape of the brain/mind that as I said 'you could have written yourself'.
Some long term but mainly short term memory, which can be funny sometimes, but it is mostly all day every day. I am fed up of hearing "oh I always forget things" or " it's your age". Well my brain was fine the day before my fall so I really don't think it is going to change over night due to age!!! That's when I walk away as I know it's a losing battle getting them to understand.
Your words here about what other people say and think are described exactly in the book and how it's so annoying. There are a few ways to think about how to deal with short term memory problems, they are the ones that affect you moment to moment day to day week to week, they are important to make your life work in the now. You may have other cognitive issues that you are not aware of also.
It may be an idea to go back to your GP and ask for a referral to get tested by a neuropsychologist who can pinpoint the the exact cognitive and memory issues. Make a point of saying that you are getting educated and informed and are seeking help from Headway itself and from experiences that other people in the same or similar position as you. Don't take no for an answer. If they say no make an official complaint there and then to the practice manager and see what happens. It's all a bit laborious but go through the system first to see if they provide the correct route to get you diagnosed and hopefully treated. You live in Wales and the health system is worse than England and an underlying, no can do attitude is endemic in the whole system. Their criteria for 'qualifying' you to get testing and treatment is so narrow that many people get left on the scrap heap, it seems that they provide the services on paper but the reality is different. If you start rattling the Welsh health service dinosaur's cage it will begin to stir. Stay strong, fight it out, oddly it will be good for your cognitive issues by getting them to work, don't give up, if you make enough noise they will act.
Thanks for that, sometimes I have the energy to pursue my issues, but often after getting nowhere I feel deflated and fatigued. I have adjusted my ways of doing things, (which I hadn't realised I'd done until it was pointed out by the OT), to me it was just the common sense approach to manage things. OT always suggests having pen and paper around, but then my house would be full of them as I can forget by the time I pick up the paper what I was going to write down. Sometimes not always, as soon as I think about something else my brain forgets previous message. Tired today because I went shopping yesterday and the thinking, talking, avoiding people and their trollies, social distancing etc etc has worn my brain out, but it is the usual thing, I LOOK FINE !!! Enjoy your day whatever you do.
I recognise everything you have said here and I would guess that there is more to deal with than a few memory problems. It's really important, when find the energy, to make that appointment to see your GP. You are not a problem patient you are a patient and the GP is responsible for making sure you get the correct treatment. If he/she does not live up to what is expected then take it to the next level. Don't get side swiped and patted on the head. Don't let the GP try to say you have mental health issues either, it makes it easy for them and gives them a good excuse to prescribe medication and keep you dumbed down contained like a quiet little child. I may come across a little strong but I have found that it seems to be the only way if they do not start providing the correct steps to providing testing and treatment. No one is going to help you fight so you have to do it yourself.
I understand what you say and totally agree, but sometimes it is hard to be listened to and believed by those that think they know better. Because I am not wearing my socks as earrings or throwing myself on the floor and breaking down I am seen as "ok" now. I have always believed that I can put across my feelings, issues by talking to them, but it is a bit like talking to the wall. The persons that have understood the most are the Neuro consultant and her Dr's, but once I got passed back to the community, I may as well ask the checkout people in the shop for help cos the response from the GP's is take a tablet!!! I don't want to take a tablet, I want to know if I am improving (I think I am, very very, slowly) probably functioning on 60% of how I used to, which is wonderful compared to lots of others. Once lockdown is over maybe I will chase Neuro people, but possibly they will be inundated with more important cases. Thanks for your help.
Ah, so really you have been seen but there are no follow up treatments or therapies or any kind of rehab. You have been left to your own devises with the hope of recovery over time.
I suppose now is the time to find acceptance with the current situation and be happy with that or to find a strategy to make improvements, a so called DIY rehab approach which is very popular in the USA and Canada.
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Brain injury rehabilitation research thesis: *Distinction*
So, has anybody else been asked by family to help them plan your funeral in case you die?
Me again
Winnie the Pooh should be a Neuro Pyschologist
