“I’m delighted to be a part of The National Brain Appeal team and am really looking forward to getting know all of our fundraisers and helping them make their events a huge success! A priority of mine at the moment is the Windsor Half Marathon and Running4Women 10k on the 26th-27th September. We still have places left for both events so if you are interested or know someone who might be, please get in touch with me right away. If you would like to take part in another challenge or if you would like to create your own fundraising event on behalf of The National Brain Appeal, I’m the person to speak to.
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.
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 Van der Bergh, patient, The National Hospital
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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.
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.