Leeds event to boost awareness of little-known health condition essential tremor

People who experience uncontrollable shaking in their bodies could be missing out on the support they need because of a lack of awareness of a common but little-known health condition.

Friday, 22nd March 2019, 16:37 pm
Updated Friday, 22nd March 2019, 16:43 pm
Merane Todd is raising awareness of essential tremor.

People with essential tremor, which is often undiagnosed or mistaken for Parkinson's disease, are invited to an event in Leeds on Saturday (March 23) to find out about the help on offer.

The condition affects around four out of every 100 adults aged over 40 and causes constant trembling in the hands and other parts of the body.

The event has been organised by Merane Todd, 44, who found out she had the condition around eight years ago when she suffered a viral infection which exacerbated her symptoms.

Leeds Teaching Hospitals employee Miss Todd, who sent on to set up a support group in the city, described the effect on her every day life from the progressive neurological disorder.

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Miss Todd, of Bradford, said: "Over the years - I'm 44 now - it has progressed more. It's always on my right side. It affects my right arm and it affects my head and my voice when I'm stressed or tired.

"I also have internal shaking, you can't see that, in my torso. I do have triggers for it. You have good days and bad days. If you're tired or stressed the adrenaline makes it worse.

"If I've got a cold my tremors are really bad. First thing in the morning or late at night my tremors are more pronounced.

"I had to change my job. I worked in maternity but I had to move to more of an office-based research post."

Along with the physical effects of tremors, people with the condition often become isolated and avoid social situations.

Miss Todd said: "You do get people who just stand and stare. It's the embarrassment of it. I'm OK most of the time but every so often it does get me down.

"People do withdraw. I don't feel like going out for meals if I feel my tremors are going to be worse.

"If people have tremors in their legs they find it difficult getting out and about. If you're standing on a train and it's packed and you have to hold on to the rail because your balance is unsteady."

Miss Todd said many people with essential tremor, which can be hereditary and is thought to be up to 10 times more prevalent than Parkinson's, do not realise they can seek help.

She Todd said: "There are a lot of people who say they've never seen a doctor and they've had tremors for many years.

Alcohol in small amounts is known to ease essential tremor for a few hours - but hangovers can bring worsened "rebound" tremors. Miss Todd said: "I hardly drink. If I have a couple then the next day my tremors are just on overdrive."

Medications are prescribed for the condition, including beta-blockers and epilepsy drugs. But they can cause side effects like sickness and headaches or stop working effectively over time.

Miss Todd said. "The side effects of the drugs can be quite bad and people stop taking them. The medication can stop working all together."

Sometimes invasive surgery known as Deep Brain Stimulation (DBS) is carried out. DBS uses implanted electrodes and a pacemaker to block the electrical signals which cause tremors. Miss Todd said: "It's invasive brain surgery. You have to be quite bad to consider it."

But there is hope that a new treatment, focused ultrasound, could be made available on the NHS. The technique uses ultrasound waves to interrupt the brain signals responsible for tremors.

A handful of people given the treatment at St Mary's Hospital in London reported an 80 per cent improvement in their symptoms.

Miss Todd said: "In the UK its just been approved for use. It's only available for private patients."

On Saturday an awareness event will be held at the Marriot Hotel, Trevelyan Square, Leeds, from 1pm-4pm.

Information will be provided by the Leeds National Tremor Foundation Support Group, mental health charity MIND, MindWell Leeds and the William Merritt Disability Living Centre. Speakers will include neurology specialist Dr Stefan Williams.

For more information about the event and the Leeds suport group, e-mail lands@tremor.org.uk

Health experts say tremor-like symptoms can also be caused by other conditions like multiple sclerosis, an overactive thyroid and strokes. People with frequent or severe tremors should see their GP.