Monday 21 January 2019

Kevin pens world first account of Lewy Body Dementia

Broadford boy Kevin Quaid has published a fascinating account of his battle with his progressive condition. Here he tells his story to reporter Maria Herlihy

He is a proud "Broadford boy" and stock to a famous hurling clan and at 6'1" in his bare feet, Kevin Quaid is a gentle giant. He is great company too as he recalls stories of a life on building sites and how he went from the boom to bust in Ireland and back again in Australia.

There are so many stories for one man and his life is an open book - indeed, so much so that, at 54 years-old, Kevin has become the first person in the world to document his life on his biggest battle - with 'Lewy Body Dementia' (LBD).

There are countless medical papers published on LBD but none from the point of view of the patient. Kevin sought to rectify this and has just published 'Lewy Body Dementia Survival and Me,' which he dedicated to his cousin Theresa Quaid Myers who sadly passed away from cancer on the very day his book was published.

The pattern of Kevin's book is a stream of consciousness in that, as a storyteller, he holds the reader's hand and takes them on his journey from boyhood to marriage and children, from the boom and bust of the construction world to emigrating to Australia. There are the countless times he has spent in hospital dealing with Parkinson's Disease in 2015 and how just two years later he had to deal with being told he had the degenerative disease LBD.

LBD is where there are abnormal deposits of protein - alpha synuclein - in the brain. These deposits known as LBD affect chemicals in the brain and can lead to severe problems with cognitive thinking, movement, behaviour and mood.

There is no cure. LBD not only ravages the mind but also the soul as there are severe nightmares, complete confusion, severe lack of sleep and mind-bending hallucinations. There are times, as Kevin reveals, when "reality seems so real but it's just unreal".

Lewy bodies are also found in other brain disorders, including Alzheimer's disease and Parkinson's disease dementia. Many people with Parkinson's eventually develop problems with thinking and reasoning, and many people with LBD experience movement symptoms, such as hunched posture, rigid muscles, a shuffling walk and trouble initiating movement.

The Corkman caught up with Kevin and his Rockchapel native wife, Helena (Curtin) in Kanturk where the couple both live. When the word 'published author' is put to him, he giggles, nudges Helena and says, "Did you hear that? Author". Despite the ravages on this "country boy" his sense of humour runs deep.

But like all stories - it's always best to start at the beginning. From quite a big family, he had a "happy childhood", laboured hard and enjoyed rolling up his sleeves to work.

Despite this "happy childhood" which Kevin recalls with ease, he outlines in the book how he was abused as a child by a man. In his book, Kevin recounts that after counselling he took the final step to confront the man who admitted that he did abuse him when robustly questioned by Kevin.

"That was it then for me, that was all I wanted to hear and I forgave him and I moved on. As a child, I had carried so much guilt and same and that is so wrong to put on the shoulders of a child," he said.

Kevin got married and had three children, Noreen, Pat and Kevin but the marriage broke down. He then met and married Helena and she also had three children, Shane, Declan and Michelle. They have been together for the past 19 years and Helena now has another role - and that is his full-time carer.

It is one which he readily acknowledges and says repeatedly throughout the interview that she has been his rock. "Without Helena, I don't know what I would have done," he admits.

Kevin was always a hard grafter and during the boom in Ireland, he had built up a solid construction crew - the good times were rolling but when the crash came so did his business.

And at 45 years-old he, along with Helena, upped sticks and moved to Sydney where some of their children were at the time.

His eyes light up when discussing his time in Australia and, in particular, when he discusses how he once again rocketed to the top and was a Project Manager on a mammoth construction site on a 54 floor apartment block.

He relished coming home in the evenings with architects' drawings that covered the floor and he would examine them in minute detail and invariably, with his mathematical mind, find that the drawings were out and re-jigging would have to be done.

He remarked that at the time his life was very good - he and Helena both loved Australia and things were finally looking up.

Despite Kevin's love of work, his health has been somewhat of a constant strife all his life. Just some of his battles included Coxsackie virus, also known as Bornholm disease or The Devil's Grip, when a person experiences a sudden attack of violent pain in the chest along with a scorching fever.

He also suffered from Viral Meningitis and Pagets Disease of the Bone, when the body's normal recycling process is interfered with and bones can become fragile and misshapen as new bone tissue fails to replace old bone tissue.

Mixed into this medical bag of tricks was Bird Flu H5N1 (a form of influenza which causes a highly infectious and severe respiratory disease); Diverticulitis (where a small bulge sticks out of the side of the colon) and finally Asthma.

But let's not forget Parkinson's and LBD.

Spending months upon months at various stages of life in hospital, both in Australia and Ireland, would batter the most bravest of souls. But not Kevin Quaid.

Of the five years he spent in Australia, he estimates that at least six months of this was spent in hospital. He had a path beaten to the door of his excellent and very caring GP in Australia, Dr Van Huffel. He has lost count of the amount of times he has been taken by ambulance to hospital and in the book he on one occasion recalls an ambulance crew member shouting out, "Is he dead." To which Kevin shot back, "I hope not."

However, when he contracted Bird Flu in Australia in January 2015, the doctor in the hospital suggested he get tested for Parkinson's Disease.

"When I was diagnosed with Parkinson's Disease, I actually felt relieved as I knew now I had a name for what I had but I still had severe pain and had to use a walking frame but yet there was nothing showing up in the scans."

Back in Ireland now since February 2015, more tests were done on Kevin and he kept a log and notes on how he was feeling. In May 2017, he was given the devastating news that he had LBD.

"I didn't know a thing about Lewy Body. I looked at Helena and her face fell. We left the office and went to Mass but it did not sink in at all," he recalls.

Then like so many people do, he went straight to Dr Google and that was a big mistake.

"Suicide has come to me so many times and I felt I would be doing everyone a huge favour. I still have suicidal thoughts but I do not want to die by suicide but I can not guarantee it," he says very matter of factly.

Kevin explained the horrors for him of LBD and especially the nightmares. "They are so real and what I would classify as a good night is a bad night and the bad nights are horrific. Your mind and brain are two separate things. The nightmares are so real they are truly frightening. I can feel my mind slipping back to when I was a child. I'm terribly afraid of the dark. I'm 54 years-old, and am 6'1" and 12.5 stone but yet feel like a child," he says.

In tandem with the severe nightmares is the severe insomnia and these two beasts are going hand in hand with his daily life. That is not easy on the body or on the mind along with the ebbing away of cognitive ability.

In his book, he says that suicide is not a selfish act and readily admitted throughout the two-and-a-half hour interview, that when he was first diagnosed he thought about suicide and felt it would be a "happy day for Helena".

With brutal honesty, he pushes a cup away in front of him and leans in and says that he still can't guarantee it and he means it.

He explains that he has gone from loving his social life and people, to not liking crowds as it makes him now feel utterly uncomfortable. He has gone from working long hours in construction and in sales to now tending to his garden when he can. Where he once worked on quite mammoth construction projects, now it can take a huge period of time to make a flower box.

Despite all that he has gone through, he says the medical care he has received in Australia and at home in Ireland has been "top class". When asked why he started to write the book, he says his cousin Theresa Quaid Myers always told him there was a book in him and when he was diagnosed with LBD, he sat down to write it.

He initially felt he would only be able to write 500 words and in one day alone 8,000 spewed onto the pages. "It simply flowed out of me, I couldn't stop it."

On the exact day that Kevin's book was published, Theresa sadly passed away having battled cancer.

"I often think about the day that it was published was the exact day that Theresa died. There really was something in that for me. She was looking out for me," he said with a smile.

In his book, he stresses that when meeting a person with LBD, it is always best to recognise the person and not the disease. Interestingly, all of the six adult children wrote about their view of LBD and how Kevin's diagnosis has affected them, as has Helena who has been catapulted into her carer role.

"I wanted this book to be raw and real and wanted people who have Lewy Body Dementia to pick it up and know and feel that it is real. For me, instead of letting LBD take over my life, I let it become my life and the reality is that more than likely I will not see my 60th birthday. I am 54 now," he says casually.

When asked if this thought fills him with further dread, he throws his head back and chuckles. "Not in the slightest. I have so much to do until then. I plan to do a YouTube video on my progress for as long as I can and I'll tell it warts and all. As I said before, the book is not the end of me it's just the beginning."

Kevin will launch his book 'Lewy Body Dementia and Me' on Monday, July 2 at the Park Bar in Kanturk at 8.30pm. Guest speakers on the night will be Amy Murphy, Southern Dementia Advisor; Collette Ryan, General Manager Care Bright; Nisha Joy, Manager Care Bright and PJ O'Neill, Counsellor.

Anyone who wishes to email Kevin can do so at