I was in my second year at the Royal Manchester College of Music, in a Master Class with top British flautist William Bennett. I held my flute up to play – and my hands and head shook so much that I couldn’t actually keep the instrument to my lips. “Wibb”, as he was known, and the other students (every single flute player in College!) were all very kind, told me to keep calm and not be nervous, and, gradually, I managed to play (murder?) the first movement of my Bach sonata. How publicly (and professionally) embarrassing was that?
A year later, playing (Bach again!) a piano piece for an exam, my hands shook so much that the left hand played in the key of C, while the right was in the correct key, Bb! Deep breaths; started again; passed the exam. Phew!
I remembered, as a child, being a bit shaky when I played any instrument, and performed various other tasks. “It’s all my fault for being so nervous” I thought, and there followed years of various self-help therapies, relaxation classes, yoga-type exercises, hypnotherapy……. All helped – a bit.
Somehow, I got my diploma, and my teaching qualification. I sang in choirs, played in orchestras, busked my way round Germany, learned to play the various other instruments needed by classroom music teachers, held down a full-time teaching job while raising my two children, taught various instruments at Fèisean. (By far the most fun, teaching-wise!). And gradually, along the way, I came to realise that the shakes were not just my being nervous.
I don’t remember when I realised that, actually, I had a condition called Essential Tremor. At last, I knew it wasn’t all my fault! What a relief!
Self-diagnosed, I spoke to my GP.
– “A couple of glasses of wine and you’re steady?” He asked.
– “Yes”
– “So why don’t you?”
– “And teach your children?!! And drive to work?!!”
Eventually, after attending a National Tremor Foundation conference, and meeting many Tremor sufferers, from all walks of life – many much more shaky than I – I sought a “proper” diagnosis from a Movement Specialist – just before I reached retirement age.
Treatments? None.
Various drugs for other purposes might help – a little – mainly with unpleasant side-effects.
A surgical treatment – “Deep Brain Stimulation” – involving electrodes implanted in the brain, and controlled by a pacemaker-type device implanted under the skin – is available. Highly invasive, but often very successful. Risks? Many. Too many for me.
“Essential tremor is considered one of the most common neurological movement disorders and is estimated to be eight to ten times more prevalent than Parkinson’s disease. People exhibit a rhythmic trembling of the hands, head, legs, trunk and/or voice. It can afflict persons of any age, gender and race and in the vast majority of all cases it is inherited. While more commonly noticed in older individuals, essential tremor can begin as early as birth. Stress and anxiety can worsen the condition.”
From National Tremor Foundation www.tremor.org.uk
Essential tremor is a strange condition. My own attitude to it is that I am eternally grateful that I have reached my seventies with this being my only major medical condition. I’m so lucky: it is not Parkinson’s, not MS. It is neither life-threatening nor life-limiting. And it’s not painful.
However, ET is often deeply embarrassing, and certainly not conducive to one’s quality of life! For instance, how many of our social activities and rituals are based round eating and drinking? “Let’s meet for coffee”… “Come for a drink”… “Let’s treat ourselves to afternoon tea” … the list goes on! Many people with tremor just don’t go out of their house. Here’s a wee list of “everyday tasks” which are difficult/impossible (and, often, dangerous) when you live with advanced tremor: eating, drinking, cleaning teeth, making tea/coffee, pouring, cutting, chopping veg, cooking, writing, filling in forms, drawing, painting, doing a Covid test, texting, taking photos, getting a key in a lock, playing musical instruments, using eye drops/contact lenses, putting on glasses/mask, sewing, knitting, using a computer… Carrying cups/mugs, bowls, plates, etc, is usually impossible. Various gadgets – e.g. lidded cups, and straws, can be helpful. One gets used to managing these physical limitations, but there are also implications for mental health too, such as anxiety in social (and musical) situations. This can quickly lead to social isolation, depression, and other conditions, some of which are all too familiar to musicians.
So – why am I writing this in a blog aimed at musicians? Am I trying to convey a message that there’s no point in playing an instrument if you’re shaky?
Quite the opposite. In some ways, I really wish I’d known about ET in my student days. – But, mainly, I’m glad I didn’t. Glad, because I have had so much joy out of playing music, and probably even more joy from enabling others to find their own musical voice. Glad, because I might just have given up playing music – and what would my life have been like without that?
A couple of weeks ago, I was leading a Fèis Rois slow session with Kim Richards, a fabulous musician skilled in several instruments, as well as being a beautiful singer, songwriter, and artist. I was marvelling at how beautiful her whistle playing was – far more lovely than anything I’ve ever played, and thinking how she was way beyond everything I could have taught her. But then I remember that, in fact, she was in my whistle class as a wee girl, so I’d maybe given her that start. What a privilege!
As I write this, I can no longer play the flute or whistle, as I can’t really get them to my mouth, let alone hold them there, or play them. (I can still play the piano a bit, and sing, though – I’m lucky!). But, in a week’s time, I will be one of the first people in Scotland to be offered a new tremor treatment “MRgFUS – Magnetic Resonance guided Focused Ultrasound” – which aims to reduce tremor significantly. It’s been around for a few years, and can be highly successful. A magnificent team of Neurologists at Ninewells Hospital, Dundee are pioneering and developing the treatment. It is, by no means, a miracle cure – there is no cure. But it aims to reduce the tremor by about 50%. Anything more would be a bonus.
I may, at last, be able to drink a cup of coffee without using a straw. I may even be able to play my flute. At the moment, only one side of the body is treated. But, when enough of us have undergone the treatment successfully, it’s hoped that the treatment may be offered for the second side.
My message to anybody who has a significant tremor?
Persevere. Seek help. Seek a diagnosis from a Movement Specialist.
Many GPs don’t have much knowledge or experience of ET – because many people just put up with it, instead of going to their GP.
Don’t give up playing music. Use any techniques which work for you, such as Alexander Technique, yoga, mindfulness. These are also very good for your overall health, physical and mental. Alcohol works well for me – but it goes without saying that it’s NOT really good for your overall health! And the tremor is MUCH worse the day after you’ve had a dram or three!
Essential Tremor is a condition I wouldn’t wish on anyone. But, when my head is shaved next week for the treatment, I will be eternally grateful that it’s not due to cancer, and that I am otherwise in great health, and happy. And singing!
I have had immense support on this journey, from family, friends, fellow musicians, and medical professionals. I’ve also spoken at length with the man who was the first person to have the MRgFUS treatment in Scotland. He has been incredibly encouraging and inspiring. If anyone reading this would like to contact me, please do. I’d be happy to help in any way possible.
Valerie Bryan: [email protected]
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UPDATE 26TH MAY 2022
I had MRgFUS treatment two days ago. It may not be a miracle cure, but it certainly feels like it! I am having lovely time re-learning how to do things I haven’t been able do for decades. I’m not at yet at home, so I haven’t tried to play the flute yet…..
