A diagnosis of Parkinson’s disease is a life-changing moment but many patients are informed of their illness in a casual manner by consultants.
Patient advocate Gary Boyle was just 44 when he was diagnosed with the condition in 2009.
A father of two with a wife, family, and a mortgage, he had been having difficulties using the mouse on his computer.
Right-handed, he decided to change his mouse to his left hand, amid his suspicion that he had developed a condition such as carpal tunnel syndrome.
Then his right arm began to hang limp as he walked.
He went for physiotherapy and undertook arm and wrist exercises for two years. However, his hand failed to improve.
Gary was sent to a movement specialist. Uncertain as to the diagnosis he decided to refer him to another consultant.
“He said ‘I don’t know what is wrong with you. I can’t do much more for you. You are going to see a consultant in a few weeks. Have you any questions for me?'
"He had me walk up a corridor so he could have a look at me. I walked outside his office and he said ‘you might have young onset Parkinson’s disease. Don’t worry about it. It’s eminently treatable by medication. This will be taken care of.’”
Gary was in no way prepared for the diagnosis.
"You need support from the minute you hear it," Gary says. "I feel people are so casual when they get to be experts. Six weeks later I went to a guy who sat me down in his office."
"The consultant grabbed my two hands, twisted them and pulled my arms in and out, and said: ‘You have young onset Parkinson’s disease. But don’t worry — it won’t kill you.’ He got up and walked away from his desk.
"I said ‘I am 44, I am not 74.’ That was how it was delivered. It was devastating. From that point forward, everything changed.”
Gary said he was fortunate to be invited to speak at a recent annual conference for private hospitals. He gave consultants advice on how to speak to patients when delivering a diagnosis.
“I just said ‘people look up to you. When they go to see you, they are often quite intimidated.' They will see thousands of patients in their career but each patient will always remember the engagement they had with that person.
"That consultant isn’t going to remember the 4,000 people they diagnosed in their career.
"Couldn’t you deliver it in a way that doesn’t cause the person to go into deep desperation?”
Gary says he “got off lightly” compared to other people who have received a diagnosis of Parkinson's.
A 50-year-old patient he knows was given his diagnosis and told he had “five good years left.”
Gary says the shortage of care further exacerbates a difficult situation.
Parkinson's disease affects the nervous system and the parts of the body controlled by the nerves.
However, Ireland has just six Parkinson’s disease support nurses to cover the whole country despite having more than 12,000 people with the condition.
The North has about 10 or 12 specialist nurses and based on our population and the recommended European average the Republic should have 31 nurses.
Gary says he recently received a commitment from Minister for Health Stephen Donnelly that the number of nurses will be increased in Budget 2023.
He says he is “hopeful” that the nurse allocation will rise.
"It involves exercise — being aware that the more there is out there the better it is for you to fight this disease. Activity and movement-based strengthening and exercising are really helpful and really slow down Parkinson’s. The nurses tell you all about that.”
Gary says the six nurses in the system are doing a “brilliant job".
“It is unbelievable how fantastic they are given the massive pressure they are under. And the number of people on waiting lists keeps growing.
"There is a lot they can do to educate people as well which could release some of the burden.”
Gary says when he was first diagnosed with Parkinson's, his confidence evaporated.
“I just took the pills that were prescribed to me even though they were the smallest pills in the world in the most difficult blister packs. What a joke. It still goes on with the pharmaceutical companies. The way they package things.
"I am in a much better place now. When you are given a piece of information that you don’t have any connection with it is very find the bright spots. I always try to find the good side.”
While his life has changed in so many ways Gary stresses that exercise helps. He says from the years 2009 to 2013 he “buried his head in the sand.”
“It was total denial. Take these pills and I am not going to tell anybody. I kept it to my immediate family," he said.
"My life is completely different to what it was 10 years ago. I am a totally different person who is living with an incurable condition. Now I can say that without getting shivers down my spine.”
Meanwhile, Mary, who is 72, was diagnosed with Parkinson's 10 years ago. She says the shortage of nurses is causing major difficulties for patients.
“I have had a situation this week where the nurse was on leave and there was nobody else. There is no way of getting to anybody because the nurse is off.
"I might think that my situation is urgent but it is not urgent compared to somebody else.”
Mary says she was diagnosed after she started to have difficulty walking and writing her name.
“A consultant said to me ‘did you ever hear of Parkinson’s?’ I said ‘what am I supposed to do?' and he said he would give me a prescription."
"There was nobody saying to me ‘you have got this condition. This is what you can do next.’
"The worst part was the confusion. People were saying ‘you have to see somebody and the quicker the better.’ But then there was a long waiting list in the hospital.”
Mary says she only learned about speech and language therapy after having had a chat with Gary.
“I didn’t even know the voice would go. That [language therapy] changed things because I started learning stuff in the group.
"I didn’t really want to sit in on the dancing classes because I knew they did chair exercises and I thought ‘ I am not that bad.’ But somebody pleaded with me and I enjoyed the company.
"Through mixing with everybody else you learn more about Parkinson’s.”