These are the words of 72-year-old Rosemary Jarvis as she tries to raise awareness of the rare and incurable genetic disease that took her husband of 52 years last November.

Reg Jarvis (pictured left and centre) spent years battling a variety of health complaints before he was finally diagnosed with progressive supranuclear palsy (PSP).

The condition is so unheard of that Mrs Jarvis was offered a business card with key facts about it to help explain to hospital staff what was going on as her husband’s health deteriorated.

But as PSP awareness week begins on Sunday, the Whitley woman has vowed to spread her tragic tale in an effort to help prepare more families should the worst happen.

Mrs Jarvis said: “Back in 2006, he had vision problems but it was just put down to diabetes. Then later on he could not write or hold a pen and was diagnosed with Parkinson’s, but it just got worse and worse through taking the tablets.”

As with many thousands of others, Reg’s symptoms were mistaken for something else and it was only in the last stages that he was finally diagnosed with PSP in January 2013.

It is thought as few as 4,000 people in the UK suffer from the disease which famously took the life of actor and comedian Dudley Moore.

The causes of the degenerative brain disease are still unknown but symptoms include repeatedly falling backwards through loss of balance and trouble with vision.

As Reg’s body and mind succumbed to the irreparable damage, his movement became more limited and Rosemary was forced to set up a bed for him in the living room of their Northumberland Avenue home.

Recalling his constant falls brought a tear to Rosemary’s eyes as she recounted night after night of helping her disorientated husband back into his bed.

She said: “He used to get up 11 times a night and I was absolutely shattered but you would do anything for someone when you’ve been married for 52 years.

“He would always be getting cuts, especially on his head from the falls.

“All those terrible cuts were hard to look at but he never ever felt the pain. It was good for him but it was sad to see.”

Despite the disease’s stranglehold on the memory, Reg still managed to hold on to a level of his faculties and insisted on having a photo of his newly born great-granddaughter by his side.

For Rosemary, it was a quiet comfort to know that her husband remembered who she was until the very end.

She said: “He was a very articulate man and he never argued or swore — he was a real gentleman.

“In the end, they said he had to go back to hospital again but he wanted to come home to die. He just kept whispering home, home, home.

“When he came back he was so happy.”

Set up once more on a bed in the family living room, Reg slipped into a coma surrounded by photos of his family.

On November 7 last year, he finally passed away at the age of 77, leaving behind his wife Rosemary, two children, five grandchildren and two great-grandchildren.

His funeral at St. Barnabas Church saw more than 150 people pay their final respects and a collection in his name raised £1,156 for the PSP Association. (PSPA)

With the support of PSPA, the Jarvis family are getting behind the awareness campaign using the group’s mascot Hope the bear and the Ed’s Laces initiative which features a shoe lace in the corporate colour of PSPA, with one frayed lace depicting the progressive nature of PSP.

Rosemary described her granddaughter Sadie as her rock after the 11-year-old diligently stood by helping to care for her grandfather in his final moments.

She said: “I wish we had been more observant. We knew he had a job writing but did not do anything. He had always been in the print industry, he was a proof reader. He could spell every word in the dictionary but he lost all that and I just wish we had thought more when he was diagnosed.”

For more information about the symptoms and support, see www.pspassociation.org.uk