Category: Inspiration

A little inspiration for the weekend

‘Up For Air’ explores the human spirit’s fight for survival through the eyes of Jerry Cahill – a 53-year-old pole-vaulter who continues to fight respiratory degeneration, depression and a potentially fatal double-lung transplant. Shot over a period of five years, Up For Air captures the fragility of life with a chronic, fatal illness as it disrupts physical, mental, interpersonal and professional well-being, and how the intersection of dedicated athleticism, self discipline, and community outreach can achieve unprecedented outcomes.

Doesn’t that make you want to put your trainers on and take your kid for a run?

Could Maple syrup enhance the effect of our antibiotics? researchers think so

Maple syrup may help fight disease-causing bacteria, including antibiotic-resistant strains that often grow in health-care settings, says a study published online in Applied and Environmental Microbiology.

Concentrated extracts of maple syrup combined with antibiotics significantly reduced the growth of four common bacterial strains and bacterial communities called biofilms, the study found.

Bacterial biofilms accumulate on medical surfaces and devices, such as catheters and artificial joints, and are responsible for many antibiotic-resistant hospital infections, research has shown.

The maple-syrup extracts appeared to damage the outer membrane of bacterial cells, increasing their susceptibility to antibiotics, and to disable cellular mechanisms called efflux pumps associated with antibiotic resistance, the researchers said. The extracts also reduced the activity of genes in the bacteria linked to antibiotic resistance.

Maple syrup contains plant-based compounds called phenols that have exhibited antioxidant and anti-cancer properties in previous studies, according to researchers. Maple syrup may reduce the dose of antibiotics needed to kill biofilms, they said.

The study, at McGill University in Montreal, used concentrated maple-syrup extracts developed from syrup purchased at local markets in August 2013. The extracts and four phenols isolated from maple syrup were tested separately and in various combinations, with and without the antibiotic ciprofloaxin, against Escherichia coli, or E.coli; Proteus mirabilis, a common cause of urinary-tract infections; and two strains of Pseudomonas aeruginosa, associated with hospital-acquired infections.

Maple-syrup extract alone suppressed the growth of biofilms for all four strains. But pairing the extract with ciprofloaxin reduced E. coli and P. mirabilis biofilm formation by about 70% and the two P. aeruginosa strains by 83% and 54%, compared with control cultures treated with just ciprofloaxin.

Of the phenols tested, only catechol, when combined with ciprofloaxin, significantly reduced the growth of all four bacterial strains. Catechol may be responsible for maple syrup’s antimicrobial properties, the study suggests.

Caveat: Maple-syrup extracts combined with antibiotics haven’t been tested in human trials.

Now that print is dead, maple syrup may officially be the greatest thing made by trees.

Title: Polyphenolic Extract from Maple Syrup Potentiates Antibiotic Susceptibility and Reduces Biofilm Formation of Pathogenic Bacteria

This nutritional inspiration comes from Kylie one of our resident CF parents who is passionate about using natural therapies to supplement mainstream treatments.  For many of us these 5%ers are among a bunch of things that we try and incorporate into our diets and routines. If it can’t hurt and it’s received well by our children, why not try it? After all, life’s too short to wait until everything is proven. So if that sounds like you, here are a couple of little snack ideas using maple syrup to get you started… (‘grams of fat’ count in brackets as gf)

7-recipe_maple-milkshake_600x935Maple Syrup Milkshake | What you’ll need

¼ cup pure maple syrup, plus more for serving (optional)

2 cup whole fat milk (4.4gf)

1 tsp. vanilla extract  & 1 tbsp Chia seeds (4.7gf)

2 scoops Conoisseur vanilla ice cream  (19.6gf)

Half a banana

Puree ingredients until smooth; pour into serving glasses and drizzle with more syrup, if you like.

Total Fat count | approx 30 grams fat

Continue reading “Could Maple syrup enhance the effect of our antibiotics? researchers think so”

A great read for every CF professional and parent…

9781921924699In Melbourne on Sunday 31st August Susan Biggar launched her new book The Upside Of Down. For those of you not familiar with Susan, she is the chair of the Royal Melbourne Children’s Hospital Family Advisory Committee. Susan together with her colleague Dr Catherine Crock and several other committed medical professionals, formed the Australian Institute for Patient & Family Centred Care [AIPFCC] which focuses on and supports a patient centred model of care. Susan also writes  about health and healthcare, cystic fibrosis, parenting, politics and culture. She is a regular contributor to the CF world both in word and print.

I devoured the book over the weekend and it’s a book every CF parent and health professional should read. Susan has two boys with CF and her insight into CF health and the healthcare system that supports it, told with humor and empathy from CF centres around the globe is a wonderfully uplifting tale about responding to what life throws at you and keeping your eye on the prize no matter what.

You can purchase the book here.

The Upside of Down


I fell in love with a New Zealander. I don’t know what I was thinking really.

After some linguistic chaos and country-hopping we settled down to have a family inNew Zealand. Then one day I found a letter on my newborn son’s incubator telling me this perfect baby had cystic fibrosis and would be lucky to live to thirty.

My laid-back Kiwi husband took this news like it was a diagnosis of a cowlick. I tried to be a brave Californian and was generally fine until someone said something overly nice to me, like ‘Hello.’ Eventually I adjusted to sharing my life with a life-threatening lung condition and began doing Aidan’s daily physiotherapy, pounding his chest as though whacking a ketchup bottle, tipping it upside down to get the last dregs to slide off. I also slipped him dozens of pills a day, like feeding coins into a slot machine.

After some major emotional ups and downs in New Zealand, a job offer in France dropped into our lives like a rescue helicopter. We grabbed hold and flew into the fascinating and romantic adventure of Paris. Now the fringe benefits of life in that city are unbeatable. But if you need to shop, drive, set up a telephone line or become a frequent flyer at a hospital, Paris is an absolute pain in the derrière. Not to mention that everyone speaks French, which I somehow forgot to learn.

My relationship with the French doctors began badly when I managed to turn up pregnant with another baby with CF and then we decided to continue the pregnancy despite our clever doctors telling us that was a dimwit idea.

Over five years in Paris things improved. Our gentle giant physiotherapist, Jean-Pierre, nearly moved in with us as part of the family ‘stay-healthy’ campaign and despite unexpectedly doing a tour of hospitals in Normandy, Cannes, San Francisco and Auckland with our two young sons, Aidan and Oliver, we were happy.

However, while almost earning an honorary doctorate in healthcare I began to question the lack of family involvement and empowerment in decisions and day-to-day care. This didn’t go down too well in France where the doctors were apoplectic when I pulled out a page of questions for them, like quizzing the Pope on the catechism.

Ultimately a longing for space, clean air and family-centered healthcare drew us to Australia which turned out to be uncomplicated and oddly friendly. I made a brief pit stop in Auckland to have another baby before reincarnating myself again for a new life in Melbourne.

The sporty, relaxed Aussie way suited me perfectly, though the crazily health-conscious teachers did struggle to understand Aidan and Oliver’s high fat and high salt CF diet; by their reaction, you’d think that a square of chocolate in the lunchbox was on a par with lacing the kids’ brownies with LSD.

After reading a game-changing article about cystic fibrosis I became passionate about quality healthcare and exercise for our still-healthy kids. Over time—and thousands of hours—this led to changes in the way care was delivered in Australia.

The pressures of life and illness weighed down my marriage and for a time it swayed in the balance before I found new love in that old relationship. And as our family took up running and sports with enthusiasm I watched my sons skip their way into adolescence and surpass all expectations: competing in the state cross-country, track, swimming and surf lifesaving finals all in one year.

This is a story of belief, a story about learning that sometimes joy is a decision.

The Upside of Down is a memoir about illness, yes, but it’s also about the reward and frustration of parenting, the hard work of resurrecting a marriage and the upheaval of cross-cultural life.

This book celebrates today because we can’t always count on tomorrow.

A gentle reminder

I was looking for something online and came across this quote which really struck a chord with me. Loving and caring for a child with a chronic illness is not a sprint, it’s a marathon. As parents, it sometimes helps to remind ourselves of that.

Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying “I will try again tommorrow”   (Mary Anne Radmacher)