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“I am one of the lucky ones”

I have a tremor – ‘essential tremor’ is actually its proper name. Having this tremor is inconvenient, to say the least. But I can’t picture how my life would be if my right arm hadn’t been repaired.

Imagine you can’t get a fork to your mouth. If you try, whatever is on the fork will soon be flying across the table. Soup is even worse. The result? Being fed all the time, drinking tea or wine with a straw. Imagine someone else has to dial whenever you want to make a phone call. Imagine not being able to open your purse to pay for something, or not being able to enter your pin code. That was me, before my operation.

I’m now one of the lucky ones. My right arm was repaired in 2013 at Queen Square (I find it easier to say and type that than ‘National Hospital for Neurology and Neurosurgery’!). To ease my tremor I now have a little sort of pacemaker with an on/off switch under my collarbone, sitting under my skin. The only thing I have to think about is to remember to turn it off when I go to bed (tremor doesn’t matter when you’re asleep) and turn it on when I wake up. I have a kind of electronic transmitter on my bedside table which lets me do it.

A stark comparison

My left arm, which wasn’t repaired, shows me day in and day out what life would be like if I still had tremor in both arms. As an experiment, you should try this: fill a glass with water (use a plastic one if you want to make it really tricky!) Take it outside, shake the arm in which you hold it quite violently and try to drink it at the same time. Most water will be end up on the floor, and the rest will be all over you. None will end up in your mouth. I’m lucky because I can use my right arm, so these days I can drink that glass of water comfortably.

When it comes to mealtimes, my wife or a friend cuts my meat. Vegetables are doable with a fork. I’ve taught myself not to be stupid and too proud to ask. Even a waiter will be happy to help if you explain your problem.

Reading a newspaper or book is fine, as long as I put it on a table. Reading a paper while holding it with one stable and one shaky hand just doesn’t work. I can’t use both hands on my computer or iPad keyboard, so I use just two fingers of my right hand. It’s slow going, but I manage.

It doesn’t bear thinking of those with unrepaired Parkinson’s or tremor in their arms – they really are handicapped. I was fortunate to have been ‘fixed’ to the extent that I can lead a pretty normal life. I’m hugely grateful for the care I have received at The National Hospital.

Tom & one of his favourites

Tom Van der Bergh, patient, The National Hospital

 

‘It’s terrifying how life can suddenly change’

My story is about beating the odds, learning to walk again and raising over £10,000 for the charity which supports the National Hospital. I feel so incredibly lucky as it could have ended so differently.

It all started in May 2007 when I suddenly had severe headaches one weekend. When they didn’t stop I saw my GP who said I had acute sinusitis. But when I was at work a few days later, I started to feel dizzy and shaky. An ambulance was called and I was rushed to hospital, where scans revealed I had a brain tumour. The night the hospital told me I was in complete shock, it was the last thing I could have imagined !

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‘I meet so many brave patients at The National’

To kick off the new year, we are starting a brand new series of blogs. Each month you’ll get to meet a patient, a member of hospital staff or a supporter of the charity. They’ll be telling us their story and why they spend their time and energy supporting us. Read more

Rallying around The National

We have many long term supporters who have repeatedly amazed us with their continued fundraising efforts.

Having raised £25,000 for us over the years, Sarah Singleton and her husband Neil are just one example of the absolutely overwhelming dedication that enables The National Hospital to continue to help the 12.5 million in the UK affected by a neurological condition.

Here, Sarah tells us where it all began, and what led to their most recent event.

“I wanted to repay the hospital for saving my life.

In 1990, after months of severe headaches and a number of visits to my GP, I was rushed to Whittington Hospital, North London. I had a CT scan and was transferred to The National Hospital, then in Maida Vale. The diagnosis was not good: a rare and malignant brain tumour called a gliosacoma, which kills most patients within 18 months. After the first operation to remove the tumour I had a brain haemorrhage, which needed another operation. My neurosurgeon, Mr Michael Powell was able to stop the bleeding and remove more of the tumour. After three weeks I was transferred to UCH for six weeks of radiotherapy, speech and physiotherapy. I had to use a wheelchair and continued with speech therapy for around three  years.

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Doing it their way for The National

We have some incredible individuals at The National: our medics are life-savers and every day our patients face the biggest fears with strength and determination.

Not content with these amazing feats of human spirit, every year medics and patients alike put their energy into organising events to raise thousands of pounds for us. From the corridors of The National, we’ve had marathon runners, trekkers, cyclists, and all manner of fundraisers coming up with individual and creative ideas to raise awareness of neurological conditions.

This year is no exception. Here are just two individuals who are making a difference, in their own way.

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Fifty miles for a fantastic cause

Jayne McCarthy who had completed a fifty-mile walk to raise money for The National Hospital wrote this moving piece documenting her journey. Well done for such an incredible effort, Jayne.

In 1985 an acoustic neuroma was found on my left hearing nerve. Although this was benign I lost my hearing on that side. Ten years later, the tumour had grown back and was subsequently removed.

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Q&A with Elizabeth

Elizabeth Kornat became a Trustee of the charity in 2010. Though she describes herself as new to this role “learning as I go along”, she has been instrumental in helping to support our Small Acorns Fund . We wanted to learn more about Elizabeth’s role and why TNBA is so important to her… Read more

Girl power!

Last month, Ashleigh Steward, her mum Sharon, Sharon’s friends Debbie and Linda and their daughters Emily and Jessica conquered Ben Nevis to raise over £3,500 for The National Hospital.

Let’s hear more about their story from Ashleigh…

In February 2012 my mum Sharon suffered a totally unexpected subarachnoid brain haemorrhage. She was rushed to hospital and then transferred to The National Hospital for Neurology and Neurosurgery where she stayed for three weeks. They performed two emergency operations and looked after her until she was well enough to go home.

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A helping hand

When you think of the word ‘impact’ a fair few things spring to mind – but what about the word ‘mosquito’? Now I know what you’re thinking: what has a mosquito got to do with anything? But riddle me this for a moment – “If you think you’re too small to have an impact, try being trapped in a room with a mosquito”

Hi there, my name is Natasha Iny (that’s me on the left of this photo), and I am currently doing my best at attempting to be The National Brain Appeal’s very own mosquito. I’m on a mission to make some kind of impact for this wonderful cause.

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A book at bedtime

Over the past few months we have been asking our followers to tweet their favourite bedtime stories – and the response has been really interesting. As a poll last year revealed, whatever our age, we still love the tales from childhood with a final shortlist including Charlie and the Chocolate Factory, Five on a Treasure Island, Where the Wild Things Are, Each Peach Pear Plum and the number one favourite The Gruffalo.

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Taming Terry

After being diagnosed with a brain tumour, Laura King decided to raise funds for The National Brain Appeal by organising and taking part in not one, but three events. With an infectiously positive attitude, she tells us how she is taming Terry the Tumour.

In April, I was diagnosed with a Brain Tumour (which I named Terry – what can I say… I have a sense of humour!) and subsequently I have been undergoing treatment at the National Hospital of Neurology and Neurosurgery,Queen Square– a specialist hospital for those with brain tumours, epilepsy, stroke, dementia and many other brain related health problems.

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Olympic dreams

Hello. My name is Simon Clark. I am epileptic and badly dyslexic (my sister is helping me write this) so sometimes feel quite isolated and I have to confess when The National Brain Appeal contacted me to offer me a pair of Olympics tickets that had kindly been donated by one of their supporters I was quite apprehensive. However 8th September 2012 ended up being a day I will never forget. Read more

The Molly Lane Fox Unit opens

The Molly Lane Fox Unit opens at The National Hospital thanks to The National Brain Appeal. The NHS will take a major step in improving the care of patients with brain cancer with the opening of the UK’s first dedicated brain tumour unit at The National Hospital for Neurology and Neurosurgery, part of University College Hospitals London NHS Foundation Trust (UCLH).

The National Brain Appeal, the charity that supports the hospital by funding clinical posts, cutting edge technology, infrastructure and research, has invested a total of £2.5 million in the unit and brain cancer service. Read more

Thanks – you saved my life says MP

An MP who underwent life-saving surgery at the National Hospital for Neurology and Neurosurgery (NHNN) to remove a brain tumour returned to the hospital to pay tribute to staff.
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