Brain tumour left me with aphasia.

[Minnie10]

Hello, I have a brain tumour (diagnosed in 2014, after I had an epileptic fit at work), after the tumour was debulked, (it was a grade 3 & I'm terrified it's going to come back, but that's a story for another day!) I woke up & I had aphasia. I couldn't say anything, I just came out with gobbledygook. I'm better now with my speech, but I don't feel confident in getting a job. I have lapses in my speech, I get stuck on some words & I'm just worried that people aren't going to understand me. I've been out of work for 3 years now & I need to work. I used to work as a Teaching assistant, but there's no going back to that now, they weren't very supportive of me when I tried to go back to work as a volunteer. Any advice would be much appreciated. Thanks!

[Kirk5w7]

Hi Minnie take a look at this website you should find something appropriate on it. I have a badge that says my disability is not obvious and it does make a difference

stickmancommuniations.co.uk...

Ok Janet xx

[Minnie10 in reply to Kirk5w7]

Okay, thanks! I'll have a look at the website 😊

[moo196]

Hi,

Remploy were great when I needed an advocate to talk to my employers about my condition.

They are govt backed agency set up to help disabled or newly disabled people get or stay in work.

Worth getting their help perhaps?

☺

[Minnie10 in reply to moo196]

Thanks! I'll have a look at their website 😊

[moo196 in reply to Minnie10]

Ask them to visit you. They came to me within 48hours ☺

[spider555]

Hi I've got aphasia from a stroke.

Still need more work.

[Minnie10]

I'm sorry to hear that, I think my speech improvement has plateaued but I thank my lucky stars that I have my reading & writing skills as I had before my op. Best wishes to you.

[Matt2584]

Hi Minnie,

You are terrified your tumour will come back.

What is your diet like? Reason I ask is because I have a lot more faith in natural medicine over pharmaceutical drugs these days. I believe eating well keeps the body well... It has done good for me so far :). Eat more fruits and veg. REAL food. I don't concider that processed food to be REAL food yet processed food is everywhere!

I originally had a brain tumour as well. Well, actually I had 2. One diagnosed in 96, that was the life changer, and the second in 98. I have got a shunt as well, which I have had rectified a few times, and I have had a lot of operations covering the tumours and shunt.

I was 11 when all this began and my diet back then was bloody 'orrible. Pure sugary junk food and rarely any natural food. I believe my diet was the main reason for my injury AKA Monsanto's fault. Anyway, I am eating much better now and feel much better for it too :).

I think because of my injury I have a bit of aphasia. I was never told that by my doctors and my family never said anything to me about aphasia but I do jumble my words when I speak sometimes. I can write a message online and word it quite well but talking to someone face-to-face, the words hardly ever come out right. After googling the word 'aphasia', reading what it means, it sounds like I have a minor case of it.

Research has come a long way since the 90s and for me aphasia was pretty much unheard of. Sine joining this forum, I have learnt other terms that I never knew of before.

Not only has research come a long way with medical terms but also with natural foods (fruit an veg). There is a wealth of information on the internet... You just have to look for it :).

[Minnie10 in reply to Matt2584]

Hi Matt, I'm sorry you had to go through that as a child, I can't imagine it. I'm a vegetarian, I have been ever since I was 11, so I eat lots of fruit & veg & have a very healthy diet, I've cut out sugar in as many things as I can, since getting the tumour, might as well be on the safe side! : ) The reason I'm terrified it might come back, the type of brain tumour I have is called Oligodendroglioma & they have a habit of coming back. I go for scans every 6 months & there's been no change, but I get stressed in the countdown to the scans! They're looking after me well so I can't complain : )

[Matt2584 in reply to Minnie10]

I'm glad to hear you are eating well :). Do you feel good for it? And I'm glad to hear you have cut out sugar. I think sugar is most probably one of the biggest problems when it comes to food, refined sugar that is. Refined sugar causes a multitude of problems. It is addictive and has even been classed as a poison.

These names for tumours, there are so many of them and can be hard to pronounce. Mine was an astrocytoma. I have no idea if that is dangerous or what and I don't know if it was graded either. All I know is it sounds like it has something to do with space

Oligodendroglioma... Try saying that when you've had a few :).

Through what I have read and heard, keeping an alkaline body is supposed to shun illnesses, diseases and so on as they cannot thrive in an alkaline invironment. Look into the PH regulatory system of the body.

Basically, any natural, REAL food is alkaline. Processed, sugary foods are acidic. An acidic body is where viruses/diseases can thrive. And refined sugar fuels tumours.

With that knowledge, I look back on my life. As I was saying before I used to have a horrible diet, lots of sugar and rarely any natural foods. That sounds like a pure acidic diet and then I am diagnosed with 2 brain tumours!.. What a koinkydink.

I'm not trying to say that eating healthy will work for everyone cos it might not, I don't know. But I am saying that people should be aware more of what they put in their mouth.

I hope that your tumour does not come back and I have faith that it won't either :).

[Minnie10 in reply to Matt2584]

I know, I had to look it up in my 'cancer files', as I call them! A bunch of booklets they produce when you can't understand what's going on!

I had 3 ops, one to take the tumour out or debulk it; one because I got a massive infection around where I'd had the tumour, they had to take part of my skull away (they think it was chemo that caused that) and finally one to put a synthetic plate to replace my missing part of my skull. So I thank my lucky stars that I'm still here & still fighting to stay fit, the NHS are wonderful!

Thank you for the kind words, take care : )

[spider555 in reply to Matt2584]

What sort of foods have alkaline in them?

I do like sweets and sweet sugary drinks. They give me comfort.

[Matt2584 in reply to spider555]

As I was saying in the reply to Minnie, all or most natural, REAL foods are alkaline foods. Look into the body's PH regulatory system to learn more about it.

Almost every day I am eating oats, raisins, bananas, dates, grapes, cucumber, spinach, celery and drinking coconut water.

The cucumber, spinach and celery I have in a homemade smoothie and I add things to it like a little apple cider vinegar and lemon juice with coconut water and hemp seeds and coconut oil.

I have got to say that before I had more faith in nature I had a massive sweet tooth, I loved cakes and biscuits.

Now, I still have a sweet tooth but I try to substitute the sugar for natural sugar. When I started to eat more healthy, I started to eat more dates and I could easily eat a bag of dates rather than a bag of galaxy minstrels now.

Xylitol is just like refined sugar only it is harvested from birch trees and it is much better for you and your teeth. That is a decent substitute but the only thing is healthy food costs more and that is where I would look into governments and conspiracies and so on.

[Jaec]

I am so sorry to hear it f your experiences. I too have found it nearly impossibke getting back to education and into work after a Brain Haemorrage but I had hoped things were better now. Have you been in touch with organisations like Cedar Foundation and Disabiliity Action and many more? They have special programmes to help people back into work after a Brain Injury. They can also talk to your employer about reasonable adjustments. If you look up reasonable adjustments on the citizens advice site and the equality commission you can find out what help is available out there.

I wish you luck. Don't give up, keep pushing

Jaec

[Minnie10 in reply to Jaec]

Hi Jaec, believe me it hasn't got better since you had your brain haemorrage! How long ago was that? I'll try the places you suggested, it can't hurt to ask. Thanks!

[Jaec in reply to Minnie10]

That was 30 years ago! I was only 15. School did not know what to do with me so I had to leave there, I tried a Youth Training Programme, disaster, then went to beauty college but could not do the written exams, then worked as a beautitian without the exams, eventually went back to college abd did design but could not proceed to a higher level. Eventually got some support through Cedar.

If Google 'workable' you should be able to find people in your area that can support you in work or in getting work.

Good luck, let me know how you get on

[Minnie10 in reply to Jaec]

Sorry you had to go through that, but it sounds like you're getting support now. I'll let you know how I'm getting on but I think I'm going to keep running my etsy shop & make a go of things there (it's an online shop).

Take care.