National Essential Tremor Awareness Month: Hemel woman shares her experience of living with the disorder

A woman from Hemel Hempstead is using National Essential Tremor Awareness month to share her story of living with the disorder.

Sheila Hayward, 74, from Nash Mills, has suffered with essential tremor for the last 20 years and wants to raise awareness of the disorder and share the effects it has had on her life.

Essential tremor is one of the most common movement disorders. It causes parts of the body to move in an uncontrolled and repetitive manner, most commonly affecting the arms and hands.

This month, Sheila has been attending a number of Zoom meet-ups - organised by the National Tremor Foundation (NTF) - and telling her friends online about her condition.

She said: "My hands kept shaking and I couldn't keep my fingers on the keyboard when on the computer. I went to my GP and explained what was happening, and my jaw kept shaking too.

"They sent me to a neurologist and they confirmed that it was essential tremor (ET), and not Parkinson's disease, which is what a lot of people think it is at first.

"ET affects over 1,000,000 people in the UK and at least five per cent of all cases of essential tremor are in childhood.

"There is no treatment for ET as such, there are just medications that you can take to mask it, but it doesn't cure it. They do not all work, and some of them have side effects so you have to take what you can and learn to live with ET.

"I use weights on my wrists and weighted cutlery so I can eat food without dropping it, and I have silicone covers and straws for drinks.

"If I go to a cafe I have to use a straw to drink a hot drink, it's much better than spilling it everywhere.

"You get used to living with it.

"Before the pandemic, there were local support groups organised for people to meet others who were living with ET, but for the last year we have been doing Zoom calls and they have been going really well.

"We just want to raise awareness of ET and the support groups/calls that are available for people. We want to try and help as many people as we can.

"The groups are great and they really help people. There are probably lots of people who do not know what it is like to live with ET."

Throughout March, the NTF will again raise awareness of ET.

The NTF aims to provide help, support and advice to all those living with all forms of tremor irrespective of age.