Campaign for funds born out of a tragic loss

AT 75 he may not strike you as a typical campaigner, but that is exactly what Michael Shepherd has pledged to do with the rest of his life.

Mr Shepherd's wife, Shirley, 75, died a year ago from Progressive Supranuclear Palsy (PSP) – a degenerative brain disease that affects

eye movement, balance, mobility, speech and swallowing. Unlike Dementia and Alzheimer's disease the brain remains fully aware.

Hide Ad
Hide Ad

"We never really talked about it, but after Shirley died I found a letter which never got posted which she had written to some friends saying that she wasn't going anywhere – just downhill fast," says Mr Shepherd.

It was five years ago that Mrs Shepherd first started suffering symptoms.

"She started to wobble when she walked and when we were out she would often fall off the pavement and in to the hedge and then she started falling backwards. I now know that people with this condition fall a lot, and always backwards, but at the time we had no idea what was wrong with her."

The couple, from Pocklington, went to their GP who at first thought it might be psychological.

Hide Ad
Hide Ad

"Then they thought she might have had a stroke and she was sent for an MRI scan. They didn't really seem to know what was wrong

with her." It was when they went for the results of the scan at Hull Royal Infirmary that the doctor told the Shepherds that Shirley was suffering from PSP.

The husband of one of their three daughters works at the Hospital for Neurology in London and put them in touch with a top specialist in the field. "It helped knowing that we were being advised by the top man but at the end of the day there isn't anything that can be done."

PSP involves the progressive death of neurons (nerve endings) in the brain.

Hide Ad
Hide Ad

The areas affected control balance, movement, vision, speech and the ability to swallow. Other symptoms include behavioural changes and weight-loss.

Over time PSP can rob a person of the ability to walk, talk, feed themselves or communicate effectively, yet they usually remain mentally alert.

A year before her death the Shepherds took the difficult decision of putting Shirley in a care home. "I just couldn't look after her any more," says Mr Shepherd. "It gets to the point where the patient can't swallow any more."

Shirley's death prompted him to start campaigning to raise awareness and funds for research. "It is terrible that it has taken Shirley's death for me to do this, but I am not the type of person who will sit in a chair and rot."

Hide Ad
Hide Ad

So far he has raised more than 8,000 for research into PSP through coffee mornings and other events. He is now helping to organise the local support group's first "Big Do" on Saturday, 2pm to 5pm, at Burnby Hall in Pocklington, 10 miles east of York.

The group invites anyone whose family has been affected to come hear about the latest research and swap ideas for supporting family members with PSP.

PSP-A DISEASE WITH NO CURE

PSP affects people in their 40s, 50s, 60s and above, the average age of onset being 62.

PSP gets worse over time. The average life expectancy of a patient is some seven years, but the rate of progression varies considerably.

Hide Ad
Hide Ad

Research has confirmed an incidence for PSP across the UK of 5.3 per 100,000 of population and a prevalence of 6.4, meaning that there are at least some 4,000 living patients across the country.

For more information visit www.pspeur.org