Tribute for Frank’s Law effort

Mr Swankie also paid tribute to Frank’s Law campaigner Amanda Kopel and described Frank’s Law as “long overdue”.

He said: “Free personal care is not something I need at the moment as we manage this as a family on the bad days.

“But it will come to a point that it’s needed so it would be another cost to worry about but at least with Frank’s Law that would negate that worry.

“People with terminal conditions still deserve to have their dignity and it shouldn’t cost them because they’re not over 65.”

Mr Swankie said his own health varies and some days he can’t get out of bed.

Although funding for research is scarce he still hopes a cure can be found.

He said: “Research is still under way. I don’t really see a cure for me but hopefully in time they will perhaps find a cure.” ago if my last two hospital visits were anything to go by,” he said.

“I had a fall in the house which led to being taken to hospital with pneumonia which can be fatal for sufferers of PSP and the crew were not aware of the condition.

“In the ward at handover I heard the nurses say he’s got PTSD (post traumatic stress disorder).

“A more recent example of lack of awareness was a visit to the dentist to extract a tooth but it took Sheelagh (Mr Swankie’s wife) to come with me to explain the risks involved in this due to the illness which hadn’t been factored in at all.

“I suppose you could ask why am I not still beating the drum? It’s simple – really getting frustrated about it will only exasperate the symptoms so it’s better really just getting on with it and enjoying the positives.

“I would love if a cure or something that could slow its progress was available more than ever as you see your family mature and you want to be part of that.

“I suppose it could be seen as defeatist not campaigning but you want to enjoy that time.”

Progressive supranuclear palsy (PSP) affects around 4,000 people in the UK.

The condition causes the rapid death of nerve cells in the brain, leading to a loss of movement, mobility, speech and a number of other symptoms.

Mr Swankie will be travelling to Milton Keynes with his wife to raise funds for the PSP Association and help out with a new five-year strategy later this month.

He said: “Although I am going to Milton Keynes I know there will be a price to pay later but it’ll be worth it.