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A belated intro'

This is what I should have posted yesterday when discovering the site. My name is Frederick I am 61 years of age, I have Acquired Brain Injury (ABI) following surgery on a thankfully benign brain tumour back in early 2015, I was discharged from hospital in a wheelchair, most distressing considering the active life I'd enjoyed, I spent 6 months at a specialised rehab unit, walking out unaided and gaining strength and feeling hopeful, even with right side weakness and drop foot I felt "on the up" this has slowly been eroded over the last couple of years and I've become reclusive, finding the daily hubbub both over stimulating which leads to confusion and, to be honest, rather futile, Both physically and mentally I feel a backward trend, my right leg almost dragging. Mild seizure activity has successfully been reduced by as much as 80% by self medicating with CBD oil as I don't believe in prescription medication.

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Hi again Fred. Thanks for providing some history ; having a clearer picture means we can cut out the formalities to, hopefully, put you at ease all the sooner.

I can empathise with your remarks about your positivity once you'd regained some control and self confidence. I recall the determination to overcome any after-effects and put the whole episode (of a brain haemorrhage) behind me.

It was arrogance with me & maybe some vanity. So, being female, I dyed my hair, wore a bit more make up and went on a 2 year shopping spree to prove I wasn't just ok, I was fanTAStic.

That's when I had to admit that the act was wearing thin and that I was worn out and struggling to keep up with everyday life. It began with short tempers and emotional outbursts.

I hadn't adhered to the good advice I'd been giving everyone else about pacing oneself and lowering expectations. I've learned there's no magic involved in coping with a brain injury ; ignoring it just doesn't work.

( There's magic in my laptop though.................my text changes to italic arbitrarily ! )

Perhaps with your backwards drift it's time to reassess how you're living your life and what changes need to be made. Instead of continuing 'As normal' I eventually learned to avoid certain 'normal' places as my damaged brain could no longer cope with the stimulus I'd once taken for granted.

Life's different for me now. I used to love loud, busy clubs, large gatherings, shopping centres etc. Now I'm happier walking alone along the riverbank, or reading, or in one to one company. I'm guessing that after a period of reflection, and some changes to your everyday habits, you'll reach a new equilibrium from where you can start over.

The ajustments take a long time, and are difficult, but we mostly get there (with occasional blips). I'm sorry the CBD hasn't helped but, with brain injury, our 'down' periods are circumstantial and not necessarily eased by medication. Only changes in lifestyle and expectations can take us to a better place.

For printed advice on coping with a brain injury you might like to phone the Headway helpline on Monday. It's 0808 800 2244 (free calls-office hours).

All best wishes, Cat x

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Hi Cat, thanks or your in depth reply, though I had noticed this is something you do from replies of yours to others posts and I commend you Cat its been very welcoming, almost an agent of Headway, along with your "accomplice" Janet. I know the feeling of having to let the "act" go. I think you may have misread the CBD comment, it has been remarkably successful I estimate an 80% reduction in seizure activity and included the information in the hope of inspiring any others interested in alternative healing methods.

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Yes Fred, I now see I did misread your final comment. It's encouraging as I have a bottle of CBD (bought from CBD Brothers) but stopped using the oil as it stained my teeth quite badly and no amount of brushing removed the stain. (Later had teeth whitened).

I was using drops under my tongue but didn't persist long enough to gauge results.

Do you use the drops or do you vape ? I'm told the drops aren't suitable for vaping.

PS, thank you for your kind comments. x

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Hi Cat, I bought from CBD Brothers myself, I take 3/4 drops in a spoonful of honey or olive or hemp oil, (it is said coconut oil is the best as this aids absorption) before bed, I'm 1 month away from being able to reapply for my driving licence as 6months seizure free is the prerequisite for starting the process. Vaping is beyond me, ask the community to see if anyone knows.

PS, had to look up absorption, its a P not a B so I've learned something from this exchange

All the best

Fred

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Hi again Fred,

Just add my support with Cat, we offer en go on n tandem, she repli s a o pod s late at night, me mainly in my he mornings by.

We are both 5+ years post BI, meeting and p on this site and finding we live within a ravel does stanc big one anther but even saying that our good days seldom coincide so keep the n touch mainly via this site.

Cat gives excellent advice she also uses her garden to maintain her sanity. Much as I love my garden I need my nephew to help me keep it in check.

I use my craft hobbies plus reading and audio books to fill my time. I swim at least once a week and I all too, if it's too windy I need a stick or I can stagger around like s drunken mad woman!

Later next year I intend to join The Braindamaged Baron aka Andy on his marathon walk for charity. I will start prepping for it in January, if I take a the bus into Manchester from where I live there is a canal walk home for me that is over 4 miles long, gradually building up multiples of that should do the trick, I find treadmills wearisome.

My hobbies include knitting, crochet, jewellery making, painting by numbers( they do some lovely ones now) rug making, you name it I'll attempt it.

After my BI I went on the spending spree that Cat mentioned but in my case it got out of hand, it was like giving an 8 year old access to a bank account and credit cards, it's in check now but will take me about 5 years to pay off because on a pension now, I do have a very patient and understanding husband.

Any how enough from me, welcome again and ask your Gap for re- referrals to tackle the issues that are recurring.

Take care

Janet x

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Hi Janet, I have just this minute replied to your "accomplice" Cat and commended her as I do you Janet you both have made me feel welcome. I had noticed this "in tandem" from other replies I had read. The typos were a tad irritating but I got the drift. I do proof read and still make punctuation errors, which leads me to kick myself a bit. Was the typo in your follow up deliberate, it certainly gave me a laugh, expecting others to understand ones attempts at humour in emails is something I have noticed to be unwise.

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I've just reread my post and sorry for the typos, I never proof read before posting and I've typed this one on my phone, well as hats my excuse and I'm sticking to it.😬

Janetx

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welcome Fred

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Hi Fredkins,

Like the username by the way :).

You sound a lot like me. I mean I also had a benign brain tumour and it left me with a slight right-sided paralysis and you mention how the years have gone by you find your right leg is dragging but for me it is my left leg.

I also do not believe in prescription medication. I only see the pharmaceutical industry as a massive corporation, they are out there for the money. They are not here to help us out at all. If they were really out there to help us out then how come natural foods can cure/treat us?, which can be acquired without paying for anything.

I believe that what people consume plays a very big role in our health condition. When I was a kid I had a terrible junk food diet, sugar galore. In 1996 was when I was diagnosed with my tumour. I was 11, almost 12, at the time and my GP told me after the first ops that he guessed the tumour had been growing all my life. Basically, he was saying he thinks it must have taken about 11 years for my tumour to grow into the size of an egg.

Well, two years later (1998) I was diagnosed with a second brain tumour. I think the tumour was around the same size as the first but that took 2 years to grow!

Over the years I had weaned off the sugar intake and started to eat a bit better. In my late 20s/early30s is when I really started to eat better and I can tell you now, I feel loads better for it too :).

Because of these tumours, I have had a lot of operations on my head. I also have a shunt too.

So, where abouts in your head was your tumour located if you don't mind me asking?

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Hi Matt,

Thanks for your reply, interesting views on diet, you are what you eat is the saying, I've pretty much always been a healthy eater, your sugar reduction is pertinent to me at the mo', even honey is in question, I seem to unconsciously be adapting a diet beneficial to brain injury, searching on google today it appears a 4 of fat to 1 of carbo is the way to go, I have recently "gone off" toast can you believe!! You have had lots of operations Matt, craniotomy I assume? or maybe your hospital has the new laser treatment . My tumour was as big as an orange (these were the surgeons words) I would have chosen something more fixed in size like your egg or a golf ball, (after all there are kumquats to navels) positioned towards front centre left, It had been growing for perhaps 30 years (again the surgeons words). I've heard of shunts but do not know what exactly they are? the word brings to mind a sort of shoving or blocking? Do you mind me asking if you have any physical issues apart from the leg, I have found myself thinking lately that I can cope with the mental aspect of BI but the restriction of movement is really getting to me Matt having been very active before the op'.

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Hi again Matt,

I just visited your profile page and was inspired by the video of your local Headway, I'm in Poole and unfortunately Headway pulled out of the county before I had a chance to visit.

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Hi fred,

I look more into conspiracy theories as they make sense and some have been proven to be true as well.

Big pharma is the big corporate medical industry.

In basic terms I believe the public have been duped for decades and decades.

Not all sugar is a problem. Natural sugars from fruit is good for you but the white, refined sugar is the problem as this can lead to obesity, health problems and even death.

Honey is contriversial because even though it is completely natural, it also depends on the make of honey you get. Most honey bought from ASDA or wherever is likely not the good stuff you need. Locally sourced honey is better. I shop in Holland & Barrett a lot now and I am currently using Manuka honey which is originated from New Zealand.

When it comes to weight gain, a lot of people think that fat is the reason we build up fat but it’s not... another lie... the world is full of them. Saturated fats is what the body needs. Trans fats that you will find in margarine is a big no no as it can cause heart problems .

Actually no, I did not have craniotomy. I had surgery but no bone was removed. My tumour was, and still is, located on the brain stem. Because of the location it’s blocking the flow of cerebral spinal fluid (CSF). The initial plan was to have 3 ops in 96. One to have a shunt installed (a shunt acts as a drainage tube to clear build up of CSF). A second op to remove tumour and then a third op to remove shunt as I will no longer need it. But this did not go according to plan. First op was a success but the second op is where it all went Pete Tong. The tumour calcified (turned into bone) and it is still blocking the flow of CSF so I have to keep the shunt in at all times now. I had a further op on the tumour in 97 as although the tumour was inactive, there was still a small area that was active that surgeons could not get to in 96 but since then it had grown a bit and was begining to make me unwell again. Like I said before, 98 was when I had a second tumour. Roughly the same size and next door to first tumour/cyst. I did read somewhere that benign tumours have a tendency to spread but some disagree. With this info though, I do wonder if my second tumour came about because of my first. Anyhow, I had radiotherapy on my second tumour. The radiotherapy was supposed to shrink the tumour and obliterate it but scans were showing that the tumour was pulsing, getting big and small, big and small. And the reason why was because there was some sort of fluid inside the tumour. Because of the swelling tumour, it was causing pressure to the bottom part of the brain, the cerabellum which is the part of the brain in control of balace. I had further surgery in 99 where they added a tube connecting to the shunt and penetrating the tumour and this was in order to drain the tumour as wellas CSF. The addition to drain this fluid did not work unfortunately. In 2000 was when I had more surgery on both tumours. I think the first tumour has been sorted out now! I guess so as I have not had any problems for years (touch wood :D). The second tumour was split right in half. Allfluod removed and no more problems... the only probs after that was with my shunt.

In 2005 I was diagnosed with a cyst in my back by my spine. Again I do not know if this was related to my head tumours at all. Anyway, simple surgical procedure but surgeons managed to botch it up. I had an emergency op later on on the shunt as they had “somehow” dislodged it. I shall also add that the nursing adult ward D was terrible and I was left in an unconcious state overnight. I had a further op in 2006 as the new shunt I had had practically fallen apart. In 2008 I had more surgery on my shunt as the shunt had blocked up or malfunctioned. And in 2010 I had 2 ops on the shunt. The first op was because the shunt blocked and the second op was another emergency op because during the first op I had a haemorrhage and blood got into the shunt meaning it was not working correctly. And again I shall add the very poor care from the nurses on the adult ward again.

So since 2010 to now, I have not set foot in a hospital... for further surgery that is and am now eating loads better as well. Hopefully it stays that way too.

A friend of mine who I know through Headway, her tumour was the size of a lemon and was attached to her pituatary gland at the front of the brain. She had surgery.they had to operate through her nose! Sounds a bit like what they used to do in egyptian times before a person was mummified :).

As I said I have a slight right sided paralysis. Nerves were damaged during the ops. The muscles in my face are weakest. My right eye has permanently turned inward. I can’t wink with right eye. My smile is not so strong on my right. I cannot naturally press my lips together without making a Hitler impression (joke) sorry for any offense.

My right arm moves ok, it might be a tiny bit weaker than my left side, it is hard to tell. But my right hand has definitely felt the affect, and I am right handed to... typical. My handwriting is slow and not as neat as it once was but my art is, according to others, amazing :).

I forgot to mention the part where I am an artist... not a well known one but art is a hobby of mine and I sell some of my work too :).

So most of my ops took place in my high/senior school and although I had some weakness in my legs at first, I did manage to walk around unaided. It was about late 98/early99 where I needed help with walking. Balance improved some and I was walking around unaided for years until only 2 or 3 years ago where I started using a walking stick. The stick definitely helps and get this, it is not my right leg that is bad but my left leg!

It kind of feels that where I had been walking around for all those years unaided, my left leg was putting in extra work to maintain my balance and now it has kind of overworked itself, it feels kind of worn out and sometimes, like you were saying, like your dragging it along.

Sorry to hear you do not have a Headway to visit. Headway is such a massive help. I hate to hear that there are so many people witha BI that cannot join a Headway meeting as they are too far away or for some other reason.

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Hi Matt,

We're on the same page as far as conspiracies go, what is going on in the USA at the moment is quite staggering, I have not owned a TV for over 30 years getting my news from youtube, and other sites on line, the BBC is obvious propaganda when can see it.The local health food store often has half price deals on Manuka so I take full advantage. Thanks for the info 'on what shunts are. You mentioned adult ward D, that wasn't D Neuro in Southampton by any chance? a possibility as your in the Pompey area and as far as I know all serious brain surgery is carried out ( in the south at least) at Wessex Neurological, which was where I had mine, (I'm along the coast Poole) which I forgot to mention was/is a meningioma, these grow between the surface of the brain and the meningies I checked out your profile page and was inspired by the video your mates at Headway put together, I'd love to know who the first 3 minutes music is by, it fitted perfectly, also some delicious looking cakes, I bet you indulged in some cake Matt despite your dislike of sugar. Also you art work was impressive mate. This site has been a bit like finding a home in may ways, I felt what might pass for a sense of purpose this morning.

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I’m glad to hear that about being on the same page :).

Yes, it is mental what is going on in the states at the moment. The US government are the worst. Our government is not toofar behind.

I do own a tv but I hardly ever watch it and if and when I do it is certainly not to watch mainstream tv :).

I’ve got to say that my mum is the one who is mainly going through the conspiracy watching. She does what you do and watches youtube a lot, that is where you will get the real facts. From independent sources. I mostly sponge off my mum haha. To be fair, I do do a little research myself at times but I don’t think I can sit there all day and take it all in.

From 9/11 to the moon landing hoax to transgenderism, pizzagate and all these false flag “terrorist attacks”.

Holland & Barrett have deals on a lot. I like there penny sales. That gives me the chance to go and buy a pot of manuka honey for £19.99, or whatever it is, and get a second pot for 1p :).

Spot on, it is the D neuro at Southampton :).

I was first put into the children’s neuro ward for the first few years where the care was brilliant and once I turned 18, I was warned before hand about going up to the adult ward D neuro. It shouldn’t be that way at all really where the nurses don’t give a crap about their patient’s, totally wrong. I guess you can blame the government for all that though. It wouldn’t be that way if they were well funded. I can’t believe how most people can’t seem to see that though. I don’t know about you, but if I lived in a world where the government gradually pinches money away from most of these services then the people should all turn their back on the government/s, refuse to pay their taxes and so on... well, we do live in that kind of world but not everyone realises it and is about time they did know. I think Guy Fawkes the best intentions known to man about blowing up parliament :j.

Thanks for enlightening me on the meningioma tumour. I have heard of it but didn’t know a lot about it. These tumours have all kinds of weird names. I know my tumour was an astrocytoma which sounds like it has something to do with space. Astro/space :).

What video are you referring to, is it the Portsmouth 2016/2017 slideshow or a different video? The music at e mins in on the slideshow video sounds like a remix of a Coldplay song. No singing in that, just music.

Thanks for the comments on my art :) and I am glad to hear that this site is helping you out and giving you a purpose :).

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