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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

 

Multiple sclerosis – symptoms, causes and treatment

Multiple sclerosis is estimated to affect approximately 2.5million people across the globe and is a common form of autoimmune disease.

This blog post provides a general overview of multiple sclerosis, together with information about the common symptoms, causes and treatment of this potentially debilitating condition.

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Posted on June 27, 2015 10:51 am
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“Mum’s illness has made us all closer”

My mum, Raena, was only in her early 60s when I began to notice little changes in her behaviour. She had a few scrapes in the car, started to misplace her keys and began to get confused when making plans. It was such a gradual deterioration, but after a while, me, my brothers and my Dad, Nick, persuaded Mum to go for a series of tests and in 2012 she was initially diagnosed with early-onset Alzheimer’s. After seeing a specialist it turned out to be a form of dementia called Posterior Cortical Atrophy (PCA), which affects the visual part of the brain and alters spatial awareness.

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‘Running the marathon feels like a miracle’

I’ve just completed the run of my life. I took on the London Marathon to raise money for The National Brain Appeal and ran it in 5hrs 38mins 52secs − and while my time wasn’t remarkable, the fact that I was able to reach the start line at all was something of a miracle in itself.

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‘I’m humbled by all the support I’ve received’

In case you hadn’t noticed, it’s Marathon time! We’re very lucky to have a fantastic team of 20 runners taking on this ultra-challenge and raising money for us. One of our runners is NHNN neurosurgeon, Neil Kitchen, who is a long-time supporter of the charity. This is his seventh year running for The National Brain Appeal and before race day, we grabbed him for five minutes to do a quick-fire Q&A session… Read more

Posted on April 24, 2015 8:57 pm
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