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www.aspie-editorial.com

Mal de DÃ©barquement Syndrome (MdDS) Mum of Two Autistic Boys Left Feeling Permanently Seasick

Mar

Michele-Marie Roberts and her sons Calum and Corey

17 March 2013 Last updated at 00:11

By Philippa Roxby Health reporter, BBC News

While Michele-Marie Roberts was enjoying a two-week dream cruise to Hawaii with her husband and two sons, she had no idea that her world would be turned upside down when she stepped on to dry land.

“I walked down the gangplank and collapsed – completely blacked out. I got the flight back home and I was staggering all over the shop.

“I was slurring my speech – on one occasion I blacked out while chopping vegetables,” she recalls.

The holiday ended in January 2008 but Michele-Marie still feels as if she is on that cruise ship. She’s been seasick for five years.

“It’s like the disorientating feeling you get after coming off a waltzer at the fair – all the time. It’s horrendous.”

When it is at its worst, even lying down doesn’t help, she says.

Mal de DÃ©barquement Syndrome (MdDS), as the condition is known, is extremely rare and very little is understood about why it occurs and what can cure it. Few doctors have even heard of it.

Michele-Marie, from Berkshire, was sent for an MRI scan and tested for multiple sclerosis and a range of other disorders before she was finally diagnosed six months after her cruise, thanks to doctors at the Royal Berkshire Hospital who recognised her symptoms.

But not all sufferers are quite as lucky – many can spend years looking for a diagnosis.

‘Draining’

Unsurprisingly, feeling sick and in motion every minute of her waking life has taken its toll. She says it ruined her marriage because she could no longer look after or home-school her two sons, who are autistic, leaving her husband to take on the role of full-time carer.

After the divorce, at the age of 49, she had to look for a job for the first time in years, despite feeling physically and mentally drained by the persistent seasickness.

She was employed for a while but the experience was too draining so she decided to set up her own business – a dating agency called Wavelength for single parents of special needs children.

“I have days when I feel sorry for myself and there are days when I wake up and I wonder if it’s gone away. But then it says, ‘da-da – here I am’.”

There are times when the syndrome can feel particularly debilitating, such as when she feels stressed, when shopping in supermarkets and using a computer.

Strip lighting can also aggravate the feelings of rocking and swaying.

Thankfully there are activities that alleviate the symptoms too, she says, including vigorous exercise, swimming and driving. She does at least two hours of exercise every day to help her cope.

Read in Full:

http://www.bbc.co.uk/news/health-21786689

Wavelength Dating

(Dating Site for Single Parents of Special Needs Children):

http://www.wavelengthdating.com/

Facts on MdDS

*Little research has been carried out on Mal de DÃ©barquement Syndrome, which means the “sickness of disembarkment”.
*Only around 100 cases have been studied by scientists.

*As a result, its underlying causes are unknown and there is no cure.

*It tends to occur after travel on boats and ships but can be triggered by air travel.

*It is characterised by constant feelings of rocking, bobbing, swaying and nausea.

*Other symptoms can include extreme tiredness, cognitive slowing or “brain fog” and mood changes.

*It has been around for a long time. In 1881 an article in The Lancet alluded to the problem when describing the experience of sailors when they tried to walk on the ground after being at sea.