Shropshire couple raising awareness over husband's rare terminal illness

Mr Ives, aged just 38, has been diagnosed with Progressive Supranuclear Palsy, a Parkinson's-like neurological that usually only affects people aged about 60.

But a month ago, he was told he is thought to be the youngest person to be diagnosed with PSP in the UK, the same condition that claimed the life of his uncle just a few years ago.

• Progressive Supranuclear Palsy is caused by the progressive death of nerve cells in the brain

• The condition leads to difficulty with balance, movement, vision, speech and swallowing

• Figures show there are about 4,000 people in the UK living with the condition at any one time

• The disease is not believed to be hereditary but research shows that some people may have a genetic susceptibility and are more at risk of developing the condition

• The average life expectancy is around seven years from the beginning of symptoms but each case has proved to be different

• There is no simple diagnosis, neurologists generally use brain scans to eliminate other possibilities

• The PSP Association believes that three out of every four people with PSP are initially misdiagnosed and often repeatedly misdiagnosed with other conditions

• The PSPA’s helpline number is 0300 0110 122

• Visit www.pspassociation.org.uk

• To help the Ives' fundraising, visit www.justgiving.com/Lisa-Ives1

The condition has no treatment and no cure, so they are now determined to raise awareness of the illness to help others facing diagnosis.

Former road worker Mr Ives said: "I had problems with my eyes to begin with in August last year. They took longer to move from side to side and the optician said he would give me some new glasses.

"But it didn't help and I was referred to a specialist for an MRI scan, but some of them don't even know what PSP is."

The couple, who will have been married two years in July, were faced with health professionals who had not heard of the condition. But because of Mr Ives' uncle Tony, who died from the condition about six years ago, they were able to question specialists which led to a diagnosis.

Mrs Ives, 39 said: "PSP needs to be recognised as much as cancer.

"It is thought to be only in older people but Darren has proved that's not the case.

"So few people know what PSP is – even the doctors and medical staff haven't heard of it.

"Christmas for us was a write-off because we were waiting to hear the diagnosis over the whole period. It was really difficult for us and when we found out there was a small moment of relief to know what it was."

A lot of victims are misdiagnosed with other conditions, including a brain tumour, Parkinson's or Alzheimers and are not correctly diagnosed for months sometimes.

Over time, the illness robs people of the ability to walk, talk, feed themselves and communicate effectively. The average life expectancy is just seven years from the onset of symptoms. Patients will experience slurred speech, recurrent falls, irritability and apathy, slowness of response and severe difficulties walking. Sometimes their eyelids close involuntarily and it becomes increasingly difficult for people to look up or down.

And despite a relatively speedy diagnosis the couple, who live in Racecourse Avenue, Shrewsbury, are still waiting for support to kick in with health professionals.

Mrs Ives said: "There's so little support once you get the diagnosis. More awareness needs to be raised so more support is there for people.

"We just have to make the most of the time we have got."

Mrs Ives added: "But we have so much extra pressure at a time when we don't need it. Our insurance did not class PSP as a critical illness when we took out the policy. Their new policy does but we can't get anything because the original policy did not.

"We had two cars on finance before this and we can't keep those. Darren isn't able to work anymore and we have to make sure he is not on his own for too long so myself and his mother make sure we are around.

"We will get a contact person assigned to help us but we haven't had that in place yet and we have had to fill out forms and worry about things at a time we just don't need that."

The couple have witnessed first-hand how little people know about the condition and how little support is available. Now, they are determined to raise awareness in a bid to help others facing diagnosis by taking on fundraising challenges – Darren wants to have a go at a zipwire and a skydive.

But in the meantime, they will be making as many memories as possible with their three children from previous marriages – two daughters aged 18 and 21, and a son aged 16.

The couple were expecting to get married this year, but two years ago decided to bring the date forward because Mr Ives' father had Alzheimer's Disease.

Mrs Ives' said: "We never for one minute thought we would be in this position in 2015.

"This was when we should have been getting married."

Mr Ives said: "The whole of our family are putting on a brave face but they are helping to support us so much."

The couple have been to Scotland, the Coronation Street set and other attractions and will now be taking a PSP Association bear wherever they go in the hope it will raise awareness of the condition.

The association is a national charity that supports people living with PSP and their families and has already offered help to Mr and Mrs Ives.

Gayle Green, a spokeswoman for the association, said: "It is really important to raise awareness of the condition with the public but also with health professionals.

"If there is more awareness then a diagnosis may be quicker and it will help other support fall in to place for families sooner."

The couple have set up a fundraising page and hope to carry out sponsored challenges to boost fundraising.

The association operates a help line to help people affected by the condition as well as health and social care professionals on 0300 0110 122. For more information about PSP or to make a donation to the charity online visit www.pspassociation.org.uk

And to help the Ives' fundraising, visit www.justgiving.com/Lisa-Ives1