I was forced to leave my family during Covid, says Cork CF sufferer

WITH his positive outlook and hectic lifestyle, family man Michael Twomey doesn’t let the fact he has Cystic Fibrosis define him.

“I have a very positive attitude,” says Michael, who lives in Rochestown and is married with a son.

“My sister Jane, now deceased since 1997, had Cystic Fibrosis and I was subsequently tested, and even though my other two siblings tested negative, I tested positive.”

Michael is now 50, but how did the diagnosis affect him growing up?

“As a child, it was normal enough to me,” he says.

“Nevertheless, things became apparent to me, like when I had to get physiotherapy and percussion therapy. I remember a physiotherapist coming to our house to teach my mother and myself the techniques required. I was not too fond of those treatments at a young age.”

Postural drainage and percussion (PD&P) are often used together to help clear the lungs and airway for sufferers of Cystic Fibrosis. Postural drainage uses gravity to drain thick sticky mucus. It moves the mucus from the small airways of the lungs to the large airways, where it can be expelled.

What else does Michael remember of his childhood?

“I had to take a lot of pancreatic supplements, which were not at all as good as they are today,” he says.

“And I remember mum couldn’t give us any high fat foods like sausages or chips. We couldn’t even have Easter eggs at Easter, though Mum did give us sweets instead.

“But through research, mum discovered an oil in Australia called MCT Oil which allowed her to cook all those childhood favourites for us in a safe way. That was most welcome! Over the years, the pancreatic supplements improved and I could eat what I wanted.”

Michael, helped by his positive attitude, achieved great things in academia and in business.

With a passion for learning and knowledge, he graduated from UCC as a biochemist in 1995. In 2000, he returned to UCC, retrained in Computer Science, and founded his own IT company in 2003.

Building his business meant structured education took a back seat, but Michael continued his development and graduated in Cloud Strategy and Innovation in 2014, subsequently completing a Masters in Data Business in 2017.

He then left corporate life in 2017 to engage in a full-time PhD sponsored by Cystic Fibrosis and the Irish Research Council. Today, Michael is the clinical evaluation manager in the Health Innovation Hub Ireland and still lectures part-time at UCC, Griffith College and the University of Limerick, in the areas of Digital Health Innovation.

Michael, who likes to keep fit and healthy, is also an instructor in Tae Kwon Do in UCC.

“I went skiing to Austria for my 50th birthday!” he adds.

As well as medication, nutrition and physiotherapy, exercise plays an extremely important part in the health of a person with CF.

“I regularly work out at the gym, I run, enjoy sailing and skiing and instructing Tae Kwon Do,” Michael says. 

“I got involved in sport early, and I’d be a competitive fellow. My son is really into sports too. He enjoys swimming, playing rugby, soccer and tennis.”

Another member of the family likes the great outdoors too.

“Our black Labrador, Koby, gets us out to the nearby forest,” Michael adds. “He is well walked and well looked after. That is another activity for us.

“The benefits of exercise are clear for me now. It helps to keep the lungs clear and is beneficial to our mental health. I enjoy keeping as fit as I do.”

Michael says lockdown presented a few challenges.

“When the pandemic hit in 2020, I was in the final year of my PhD. I will never forget March 12, 2020,” he says.

Not only did he have to press pause on the physical activities he enjoyed most and rent a treadmill and bench for the all-important work-outs, he was also forced to move out of the family home to ensure his safety, and cocooned with his parents, who were also in the high-risk category.

“It was challenging for my parents who were cocooning, and challenging for me, moving back to them age 49,” says Michael.

“I was forced to move out of my home, away from my young son and wife. My wife was still going to work and my child was still attending school. As they were coming into contact with others in the community, they risked bringing the coronavirus into the house and risked giving it to me,” explains Michael.

“There were no vaccines then and my son’s education was critical, and it was also critical to protect me. I got some walks in and some running but bad habits crept in too, eating more food and living a more sedentary life.”

But Michael stayed positive.

“My day became a rich tapestry of phone and video calls and while I was physically separate from them, the sound of their voices and the ability to see their faces allowed me to endure the ache of physical separation.”

Michael felt safe to move back home when schools closed and his wife began working from home, but he added: “Getting exercise became more challenging as gyms were closed and there were no classes.”

Now normality has returned.

“We get up at 7.15, we have breakfast and it’s full on getting to work and school,” says Michael.

“After work, my son has soccer or rugby training and my wife and I go the gym. I like working out with other people in a class situation. I enjoy teaching Tae Kwon Do. I love sailing in the summer and skiing in the winter.”

Michael tries to avoid infections.

“I take pancreatic supplements and nutritional vitamins related to my condition. Up to 26 tablets a day. They keep me vertical!”

He is a strong advocate of 65 Roses Day in aid of Cystic Fibrosis, taking place on Friday, April 5 this year.

“I am a strong advocate of 65 Roses Day,” says Michael.

 “I am quite healthy and mange my condition well. Others may not be so fortunate and may be dealt a different hand where they suffer more and can’t exercise as much as me. They may need more support. CF manifests itself differently in different patients.

“My sister Jane had a more aggressive form of CF and was not able to exercise, and she had a lot of hospital visits. For patients like that, support and funding is very important.”

What is Michael’s prognosis?

“I keep myself healthy as much as I can. I never let my condition define me. I never wanted anyone to feel sorry for me. I can do empathy but not sympathy! I think it is bad enough to have a physical condition without having a psychological condition.

“I choose to think positively. Mental health and a good attitude in dealing with it works for me. 

"I do all I want to do and face challenges head on. I don’t judge others how they manage their CF. But I know what works for me. It’s not always easy. At times I get infections and you think about your mortality, but I keep dark shadows out of my life. I don’t like pity. I have no time for that. I work too hard to keep healthy.”

Michael has a motto. “Life is for living. That’s my honest belief. I appreciate I am a patient of today, but everybody eventually succumbs to health and becomes a patient someday.”

“I try to be treated the same as the next fellow. I’m a complicated fellow - we all are!”

For the first time in three years, Cystic Fibrosis Ireland’s annual fund-raising appeal will once again see the country coming up roses for 65 Roses Day. In a show of flower power, volunteers will be out in force selling purple rose pins in towns and villages the length and breadth of the country, as well as in shopping centres and Dunnes stores outlets.

Please support it on Friday, April 8 by taking part in a 65 Roses challenge, walking 65,000 steps, running 6.km, or cycling 65km, or donating online at 65Roses.ie

For more information on the work of Cystic Fibrosis Irealnd, visit www.cfireland.ie