Raisin Awareness

[Negeen]

Is there any way we can raise awareness about BI? Like maybe a youtube video or something- i'm just tired of all of us being misunderstood by the world. Our families, employera, and health care professionals are even confused. It's time to raise awareness!!

[B_S_A]

I'm already pretty aware of raisins

[Negeen in reply to B_S_A]

Hahahhahahahhaha Ben! I love you! That cracked me up!!

[Negeen]

Still laughing.....

[B_S_A]

Any specific topic in mind? I think "brain injury" might be a bit too broad.

[Negeen]

I'm not sure. There are tons of topics. Looking better than you feel, memory loss, lots of things. What do you think?

[thepiercy]

Doing my own small piece in this way. Talking a big W,I group today then speaking in Colchester on31st May and Kings College London on 11th June. whatsgoingoninhishead.wordp...

[Flumptious in reply to thepiercy]

Some other forums that I hang out on have a 'like' button. i wish this place did! I just want to say that I 'like' your post.

[SAMBS in reply to thepiercy]

How did the WI group meeting go Skipper - I used to belong to Gunfleet one at W-o-N, before moving here - its not far from Colchester, I was back at WON last summer, and met some of the members again, but wasn't as badly affected then as now after ca accident, so good luck with both upcoming meetings. Colchester General has a good neurologist there according to a friend whose husband had a bad fall from a ladder just before or after xmas and I know there are several problems for hm as well. The neurology unit arranged for a lot of backup support when he got home which was good.

[thepiercy in reply to SAMBS]

Went well thanks. About 50 very interested ladies and some good questions about the impact and longer term effects of tbi

[sospan]

headway.org.uk/action-for-b...

[SAMBS in reply to sospan]

Hi sospan - wonder if poster is on FB / Twitter - that would vertainly raise awareness if yes!

[Hidden]

I agree it is the secret illness

[spartan300]

BI is that difficult to understand or treat it leaves the medical establishment baffled ? I think that if you have a BI you should be treated with more care and understanding esp by the government an DWP, after all it costs more if you don't get the right treatment and benefits to manage your own condition, I have said this before you may be better of if you are in prison as the government has a DUTY OF CARE for prisoners but not if you are free, I understand that this may not be ideal for some it maybe for others, just check out what you can get in prison, i was talking to someone who has been in prison , he said there is every facility esp for education you want to learn how to draw and paint or learn computers or go to the gym it is there for you no washing meals cooked for you.,

the point I am making is that it is cheaper to take care of your needs out of prison than in?

your thoughts on this please.

[Hidden]

IT WOULD HELP IF THE MEDICS JUST LISTENED. MY NEURO SAYS HE HAS LEARNT A LOT FROM ME TO HELP OTHER PATIENTS. I QUITE LIKE BEING A TEACHING AID!!

[Negeen in reply to Hidden]

I think your neurologist is very humble for saying he thinks he's learned a lot from you. Most doctor's are not humble enough to admit that.

[Hidden in reply to Negeen]

at least one of the GP,s at my doctors has admitted learning from info I have given him at our Patients Forum

[Negeen in reply to Hidden]

That is really cool!!

[Hidden in reply to Negeen]

I know you live in france does your doctors have a Patients Forum where you can challenge or support the doctors I have found it very useful being a member

[Negeen in reply to Hidden]

I live in the U.S. actually. But sadly no, doctors here do not have much personal communication between their patients..

[Hidden in reply to Negeen]

Apology's don't know where I got France from

[Negeen in reply to Hidden]

Lol no problem! I'd love to be French, it's way more exotic than being from California!

[SAMBS in reply to Hidden]

Hi Dillm its me lives in France and a couple of others I know of but don't know their ;aliases' if on here.Its good you've an interactive doc.

[BarbadosKay]

nice idea

[Hidden]

definetely

[Tortie14]

I think that brain injuries compared to many illnesses or disabilities suffer in two ways they are often not visible and hard to quantify or prove e.g. Like a bad back which can be agony but not show up on X-rays etc so you can look normal. Brain is complex and still very little understood compared to other bits of the body. a brain injury is an umbrella term like ME or IBS or cancer which can mean very different things. So a GP will know relatively little about them as it is such a specialised relatively rare and misunderstood term. so raising awareness starts with each of us who are impacted and family friends professionals etc. A huge task thank heaven for Headway which even my neurologist at National Hospital for Neurology did not tell me about when I asked where I could get help adjusting to my moderate head injury! And he was a listening helpfully consultant and the specialist centre so almost anything we do at any level can only help.