Kirsty Paterson talks to two men who fought to have their condition recognised and to help those yet to be diagnosed
The first thing they noticed was a fall. It happened without warning; there was nothing to trip over, no dizziness or fainting '“ just a sudden loss of balance and a backwards fall, hard enough to hit the wall and leave a mark. Hard enough to hurt.
When it happened a second time, Ian McLeod and his wife Christine knew there was something wrong.
The question was: what?
It took them two long years to find an answer; two years battling for a diagnosis, feeling that doctors were not listening or dismissing what they had to say.
Christine said: “We noticed Ian’s voice was getting quieter, as if the sound wasn’t getting out.
“Then, in between two appointments with a specialist consultant, Ian lost the power of speech.”
When the diagnosis finally came, it was devastating.
Ian was told he had a rare, degenerative brain disease called Progressive Supranuclear Palsy – PSP.
At last, they had a diagnosis – along with the knowledge that there was no treatment or cure.
It causes the nerve endings in the brain to degenerate, leading to problems with balance, movement, vision, speech and the ability to swallow.
“You lose everything, apart from your brain,” said Christine.
Ian was also told his life expectancy was around seven years after the symptoms first appear. That was seven years ago.
As we talk, we’re sitting in Ian’s house in Cumbernauld.
He’s typing, slowly and carefully on to the iPad that is now the only way he can communicate. The words on the screen said: “I should be dead by now, Kirsty.”
“But you’re a fighter, Ian,” I replied.
There’s no doubt the words are true but they feel empty and meaningless.
For years, Ian was the manager of Glasgow’s busy Park Bar, where Highlanders gather. Born in Lewis but having lived for many years in Cumbernauld, Ian – or Sgadan as he is known to many – was the centre of every social gathering.
Over the years, he helped to raise thousands of pounds for charities – and when he asked for help, his friends did not let him down.
When Ian began attending a Parkinson’s self-help group in Airdrie, he quickly set up a sponsored hill climb to raise funds.
It was the biggest single fundraiser the group had ever had and helped to purchase a new therapy table for massages.
Last year, his friends back on Lewis organised a fundraising dance for the charity PSPA, which campaigns to raise awareness of the condition and funds research.
The evening brought weather that could hardly have been worse, with howling winds and heavy rain – but it still raised more than £5000.
The money is vital but just as important is raising awareness of a condition that is often misdiagnosed and under-reported.
Unfortunately, it’s easy to see why even experienced medics are baffled.
Keith Swankie, from Arbroath, was diagnosed in April 2012 after his GP attended a conference where a speaker talked about PSP and his doctor recognised his patient’s strange symptoms.
However, Keith’s symptoms are very different to Ian’s. Keith’s speech remains clear and he is able to chat on the phone. And while Ian remains able to walk, Keith has to use a wheelchair to get out and about and is now blind.
“The lack of awareness is incredible,” he said.
“Once when I got taken into hospital I told the paramedics I had PSP and they had never heard of it.
“Then, the consultant had to Google it!
“But PSP presents in different ways and it is very rare, so it is difficult to diagnose. One poor guy, who has since died, was actually sectioned because they thought it was a mental health issue. That was pretty harrowing to hear.”
Such a lack of knowledge left Keith determined to raise awareness and he agreed to appear in a YouTube film for PSPA.
He also pressed for an event in the Scottish Parliament, which led directly to funding for a Scottish research centre.
While PSP cannot be treated, therapies can help so early diagnosis is vital.
It would also allow people who are diagnosed in future to come to terms with their illness, rather than first having to fight to find out what is wrong.
In addition, Keith helped set up a PSP support group in Dundee, which serves the central belt and Fife as well as Tayside. There is also a group in Aberdeen.
Ian and Christine go by bus to meetings. It takes a full day but they believe it’s worth it.
“You meet people you can relate to and who know what you’re talking about,” said Christine.
Keith is now taking a back seat from the group as he has his own health to think of.
Ian, too, said he had made his contribution to fundraising.
And sadly, their huge efforts won’t benefit them.
However, Keith added: “We don’t want anyone else to have to go on this journey.”