I am going to write a book on TBI and life after

[Teazymaid]

my mum -in -law is a journalist who has also written for the magazine True Crimes ( I think that’s the name) most recently … She has given me the definite yes to helping me put a book together regarding TBI and the after effects .. the lack of help and support regarding Rehab which is non existent in Cornwall regarding the NHS .. plus the lack of knowledge of what is available privately

I also what to include conversation on here as this is the only place I have received help , guidance, support , understanding the list just goes on ….

I also want to address our diabolical PIP system of which I have had no money for 13 months and have my appeal in a court next week .

If you are happy for me to use your words which can remain anonymous please let me know .. this is my email address which I am happy to give out as with my wonky brain all of this isn’t that easy to do but I’m stubborn enough to do it 😊 Sue

[e-mail]

Headways has also said it is a good idea and once written would like a copy

[Exhaust]

What a fantastic idea I wish I as a parent of a TBI survivor had the get up and go to write an honest account about life after brain damage . It's a very scary place to be and yes the lack of support other than headway ( or unless you're very wealthy ) is virtually non existent. And again yes the rehabilitation situation is appalling in the Cr6 area . I read several books while my daughter was in hospitals all of which had " happy-ish endings " and left out a lot of the grim reality. It would have been more helpful ( so be it sad ) to be more prepared for how life was going to be . By all means use any of my questions / comments or contact me for our experiences. Good luck

[DTBI]

Great idea. I started my second life 11yrs ago, and it took me 4yrs to cope with the damage to my brains capabilities.

Perhaps of more relevance I did try later to see a Neuropsychologist for 5 yrs. Still not succeeded but established they don’t exist in Derbyshire (apart from Chesterfield but only available in first 3yrs of your TBI), and I was also rejected by Sheffield and Stockport.

I more recently paid privately to have a brain scan in Greater Manchester via someone I’d seen 9yrs ago. He was very frustrated at my ability to see a Neuropsychologist and via himself has got me placed me on a M/cr NHS list.

Hope this type of experience is of use to you. x

[James1984]

I think that is a great idea. I was speaking to another lady today and she had very little help and basically no idea what she was in for as far as having a brain injury (this is here in Australia).

[cat3]

Go for it Sue. I loved writing at college (adult education) but found it exhausting since the brain injury. But you could be our ambassador. I'm sure others will be more than happy for you to use their words ; I know I am . . . . . .👍x

[Chat2U in reply to cat3]

Hi, you definitely can't assume that everyone will be happy for their words to be included in this book. The fact she's sat there screenshotting people's conversations makes me never want to come on here again!

[Teazymaid in reply to Chat2U]

Oh please don’t think that … I would never use anyone words unless they gave me the go ahead . The only reason I screen shot things is I very much struggle with short term memory and even forget what I have written .. I only do this as it helps me to understand why I am like I am .. .. nothing will be put into words unless the person gives it the 💯 go ahead ..

It is my story of living with a TBI and I would like to include this place ( it will be know as headways online group ) that is it . It is this place that I have received the most help , support , understanding …. The list goes on .

I am also wanting to voice the lack of rehabilitation, the PIP accessement and the lack of knowledge we have world wide .. don’t stop coming to what is the best place to get support as I wouldn’t jeopardise that for the world .. Sue x

I refur to screen shots as I do this when I find articles online , politics, support agencies, the government .. just about everything that you can openly read online .. x

[Teazymaid]

I’m struggling this morning just attempting to get screen shots in order 🤯 3 hours and can’t carry on . Will come back to it when I can .. I’m not giving up I will get this book written .. not sure how long it will take but our voices will be heard . Sue

[cat3]

💐x

[westbury200]

Is that a hyphen between Morrison and churches in your email address?

[Teazymaid]

the email address is underscore on a hyphen between Morrison and churcher

[JPBeeves]

hello teazymaid,

I think you will find that support from NHS ,Stroke association and headway is none existent,there is a North /South division, London area seem to get all the support and attention.

I have suffered an ABI in the form of a cerebral infarction + multiple T.I.A’s , this means that I have had a stroke & mini strokes,but with out the physical deformities.i still suffer from it internally.

I had to eventually put a complaint in the my Doctors at then and change to another doctor who has been better.

Both headway and stroke association in my area can only offer a coffee and chat with quizzes once a month.

To be perfectly blunt and honest, I can do that at home 7 days a week.

I have been pro-active since my stroke in 2016,

I could tell you my stroke life story but I’d be writing a 20 page essay

[Nemo24]

No thanks from me, but good luck with it.

[Canary56]

What a noble idea. I am a care giver to my husband. I would be more than delighted to give you a snap shot of my life as a “ Care Giver” .

[Mhelpsme]

Slowly and surely is the way to go Sue, remember the story of the tortoise and the hare - well we’re the tortoises now 😜. Might take us longer than before as we need to rest, but we get there 🙂‍↕️.

If you’d like any help (exps. etc) just ask.

Well done lovely 💐

[Teazymaid in reply to Mhelpsme]

Thank you and yes I am getting used to being a tortoise 🐢 . I’m on a few down days now .. completely exhausted and got my PIP tribunal next Thursday so trying to reduce my physical and mental stress along with waiting for more new glasses as I’m struggling to read what I have written so far for the PIP tribunal .. will return after Thursday Wish me luck in this appalling so called PERSONAL INDEPENDENCE SCHEME…. As my independence like a lot of yourselves has been ripped apart Sue 🥴

[Mhelpsme]

will be sending huge luck across to you Thursday. Sucks we have to fight just to get financial support when we desperately need it. Worked from age 16, no benefits until now and yet I’d have more success with financial help from the government if I’d just arrived and never paid a penny.

🤞 🍀 x

[Downinil]

Oh Wow! Do I ever have a story!

[Gordo6500]

Hi you can use anything I wrote to you, good luck on the book !