THE ice bucket challenge has raised millions of pounds for motor neurone disease — but two brothers hope the little-known but similar condition progressive supranuclear palsy is not neglected.
The challenge, which sees people douse themselves in ice-cold water then nominate friends to do the same and donate to charity, has seen a huge boost in awarenes for motor neurone disease — or ALS as it is known in America.
But Gordon and Steven Watson say their mother’s condition — progressive supranuclear palsy or PSP — also needs a “gimmicky challenge” to raise its profile.
Joyce Watson, aged 66, fell several times resulting in a broken hip and hip replacement before further tests showed that her symptoms pointed to the rare degenerative condition affecting the muscles.
Since then Gordon has moved back in with his dad, John, to help with the caring of his mother, who is now wheelchair bound.
The 28-year-old, who runs EPT Fitness, said: “When mum was diagnosed, even the doctor didn’t know what it was, never mind anyone else. If PSP had a gimmicky awareness campaign like the ice bucket challenge for ALS, it would help so much with raising awareness about the condition.
“It’s hard to see someone who was so strong and independent become a prisoner in their own mind.
“The two conditions are very similar — they are both degenerative and affect the muscles. Your mind is still the same as it was; your memory is intact but as the condition progresses you get to the stage where you can’t get your words out. Mum has to spell words out a lot so it can take a long time to get a sentence out.”
The pair have so far raised an impressive £10,000 for the PSP Association.
Steven has cycled three charity marathons to raise the money and now Gordon hopes to bring the target up further at a fun day on Sunday at Edgworth Cricket Club from 1pm.
The pair are looking for a company to help with the PA system at the fun day. If anyone can help, contact 07890 626690.