Saturday, April 2, 2011

Walter's Story: Exercise & Cystic Fibrosis

Why am I 45 years old with Cystic Fibrosis? I was told I’d be lucky to see out my teens. Exercise has always played a big role in my life, and most likely is the reason why I am still in the land of the living.

My parents weren’t great sports fanatics, and I wasn’t much good at any sport. In fact I was always last to be chosen for any school team. I was the smallest in my class for most of my teens. I did love riding my bicycle to high school in Holland, 10kms each way! My parents could not get me to go in the bus, as I would always prefer to ride at high speed (with my neighbour) on the Dutch bicycle paths.

Once we immigrated to Australia, when I was 13, my family adopted an Irish Setter. I ran with it every day. In my late teens I also had a job as a milk-runner; delivering milk to peoples doorsteps from the back of a truck. I ran with ‘little athletics’, walked in the mountains with the FBI (Family Bushwalkers Incorporated), I did lots of outdoors activities with school such as hiking and caving.

Never was I very competitive, not ever did I need or want to come first in anything. My aim was to be outdoors and having fun. I don’t have a competitive bone in my body in fact. This also meant I didn’t have too many sport injuries in life. Even when I ran in marathons, half marathons and tri and duathlons I would only ever go in them for fun and just to finish them. I would cough so much during those events that people would regularly ask me if I was OK. My standard answer was; ‘Yes mate, I’ve coughed this distance before’. Swimming was the hardest for me. Maybe because in public pools it was not acceptable to cough and spit, so my training was limited there.

For me the exciting thing about exercise was variety. The more the better. I am easily bored, so I always tried new things. Loved roller blading, which I did with my mates on Sunday afternoons on an abandoned school play-ground. During the week, one of us bladers would sometimes find an adrenaline filled and mostly downhill course of 10-20 kms. When I was in my late twenties I beat the scuba diving medical test (by telling them I was a heavy smoker!) and started diving. After about 200 dives over maybe 5 years I realised how stupid I had been, or how lucky not to have had a pneumothorax! I was able to comfortably have huge coughing fits 20 meters under water, and even got my Advanced Open Water Padi certification. I still enjoy snorkelling, but when snorkelling I need a flotation device for when I cough, unlike when diving with a regulator in your mouth and a BCD (Buoyancy Control Device) keeping you steady.

Fun runs and community sporting events are always the most fun. Usually they have good prizes, and I often score an encouragement reward (and CF awareness!), or for having travelled the furthest to be there. And yes, sometimes I even end up first in my division (when I happen to be the only one in it!), like with Orienteering recently!

Last weekend I cycled in a big charity bicycle ride and I thought it was more of a social ride. Low and behold it was full of fancy gear road riders and I rode the entire distance on my own. I was the only one who brought lunch and snacks, and had a great ride on my own up the back.

Skiing is another great sport I loved doing. Although a little expensive now, I discovered that by doing cross country or trying out snow boards you don’t need the expensive full lift passes. I also discovered that if you rent a snow board they happily change it for cross country skis after lunch. When I was under 18 there were loads of affordable skiing offers for minors, complete with bus and lift tickets. I had rock-hoppers (old skis) that were so rough that I had no qualms about skiing down rocky patches, and got a ‘Wally of the Year’ award for skiing Thredbo from top to bottom when there was only half cover – with sparks. I had a lot of fun!

All through my life I have stayed relatively healthy mostly through sports and adventures, but of course my lungs have declined and are dipping towards the 40% of predicted FEV1. I still ride my bicycle everyday to and from my 2 hours a day desk-job, and try and do a daily ‘proper’ exercise (walk in the hills for an hour or so). I regularly take the kayak out for a paddle or go into the mountains, jog around the beach or play with the Wii inside. When I am lucky someone invites me to go sailing or mountain climbing, but mostly I do more accessible sports.

For work I have a casual office job where I do IT and Admin support for 2 hours a day in town, close enough to commute on the bicycle. I also do some freelance computer work which I can do from my laptop and I waste an awful lot of time doing just ‘stuff’ on the computer, mostly voluntary web work, blogs, and trying to write a second book. There is never enough time in my day as you can imagine, I also do a lot of volunteering where I can. A member of the local Lions group, and a Friend of the Lillico Penguins (a nearby colony of little penguins), help with bird counts and wherever people can use my help,...

And CF? Yes, that is a job on its own. Doing a thorough saline neb in the morning with huffs, puffs and flutter takes me a good hour, again at night with Pulmozyne too. My girlfriend ensures I never go hungry, feeding me day and night, and making sure I don’t forget anything (a huge job!), from Calcium tablets to insulin, reminding me to take my enzymes, my keys and my lunch. She comes with me on many of my exercises, including running with the Hash House Harriers (probably my most favourite exercise as it includes a beer or three), coming to Hobart to the CF Clinic, collecting for CF on 65 Roses day,... I think CF is team work, and we keep each other motivated. A while ago I took a cruise with my 77 year old mother (for her birthday), but even there I woke up at 6am every day to get to the ship’s gym for the onboard boot-camp classes, and on the island stops still managed to abseil down a waterfall... Never stop exercising!

I like to keep adventures on the horizon, like in the past when I rode across Europe (, or last year when I climbed Mount Kinabalu ( and next year I am hoping to do the El Camino trail, a 6-week walk across Spain.

Next time I might write about all the alternative medicine and therapies I have tried with varying results.

BIO: Name is Walter van Praag. Born in Holland 8 July 1965, diagnosed with CF at age 10, migrated to Australia at age 13. Educated in Canberra, complete with BA in Philosophy and BSc in Mathematics (not because I was smart, just because university life was perfectly suited to CF!). Ended up working with computers for a living after having gone through numerous government jobs and even set up and operated a small transport business! Worked in HK for a year, 3 years in PNG, 3 years in USA, travelled the world on a budget at every opportunity. Greatest claim to fame was receiving an Order of Australia Medal for 'service to community health through raising the awareness of cystic
fibrosis'. My personal biggest achievement was writing my first book; 'Coughing the Distance - cycling from Paris to Istanbul with CF'.

Note from Ronnie: Thank you SO MUCH Walter for letting us peak into your daily life of exercise and Cystic Fibrosis. You've provided us with great examples of different types of exercise we can be doing and ways that we can "keep it fresh". It's obvious that exercise has played a big role in your life and there is no doubt it is a huge reason that you are still kicking major booty today! Keep up the good work and thank you for all of your time and effort put forth into CF awareness.