Coughing for CF – Cystic fibrosis inspiration

grey Coughing for CF   Cystic fibrosis inspiration I first met Walter Van Praag in 2008 when I owned my own pharmacy. Wal came in to pick up a huge basket of medicines, antibiotics, puffers, nebulised medicines and pancreatic enzymes. We chatted for some time about adventures past and planned, since that day we have stayed in touch. Wal is an inspiration to me, I hope his story about cystic fibrosis inspiration will also maybe make you think, “What is stopping me then?”

You see Walter has a life threatening genetic disease called cystic fibrosis or CF. CF causes mucous secretions to be really thick and to block up certain organs of the body, mainly the lungs ad pancreas. Suffers of CF fight a constant battle with lung infection and poor nutrient absorption, they have to regularly take pancreatic enzymes for gastric health and nebulised and oral medication to maintain proper lung function. Often sufferers progress to diabetes (due to pancreatic damage), it is not uncommon for sufferers to run out of antibiotic options that work for their lung infections.

Life expectancy of a CF sufferer is somewhere in the mid-thirties.

Why am I telling you all this about Walter’s condition?

When I met first Wal I figured he was something of an adventurer when he told me all about his bicycle ride from Istanbul to Paris to raise funds and awareness for CF. The book he wrote called “Coughing the distance” (http://www.vanpraag.info/cofe/) and the documentary of the same name (http://vimeo.com/1235023) were massive inspirations to me. I mean if a bloke with such a serious illness can do this stuff, why can’t I?

Wal has just returned from another epic adventure, he along with some friends, rode 5000km from Hanoi through Vietnam, through Cambodia to Bangkok, Kuala Lumpur and onwards to Singapore, again to raise funds and awareness for CF.

Walter is 47, statistically speaking he should be dead.
grey Coughing for CF   Cystic fibrosis inspiration I caught up with Wal mid-way through his journey after he had finished a hard days riding on the Ho Chi Min trail. Here is what he had to say:

You’ve done had some grand adventures whilst raising money for CF, most notably your ride from Melbourne to Sydney, your attempt on Mt Kinabalu in Borneo and your epic ride from Paris to Istanbul, now this, riding 5000kms from Hanoi up to Singapore what inspires you to keep going?

Other people’s enthusiasm and willingness of friends and acquaintances to participate keeps me going as well as the support I get from the international CF community. Being a bit older than the average survivor with CF I have many worried eyes upon me. The words ‘you can’t do that’ inspire me to do whatever is being referred to! Also, don’t forget the world isn’t going to end if I need to catch a bus somewhere! I am always cautious and don’t take unnecessary risks… Well, that is debatable isn’t it.

Your last few fundraising adventures have been on bicycles yet you are active in your local running club the Hash House Harriers. Why not a fundraising trek to mix things up?

Hash House Harriers is a lifestyle and family for me, I have been running with them for 20+ years, and many of us old Hashers don’t necessarily run on Monday nights… A lot of us walk too. I try to run, but it is very hard for me to run – with only 40% – 45% lung function.

I do enjoy bush walking (trekking), and often go for walks in the Tasmanian wilderness. Occasionally I backpack or go snowshoeing, but with my slow pace I have trouble finding friends to join me, so I do it with visitors to the state and people who don’t normally do that sort of thing. Friends that do it regularly are in clubs that are too serious and fast for me and I would slow them down.

Having said that, I am planning to do the El Camino de Santiago de Compostella pilgrimage in Spain sometime soon too! Maybe next year when I’ve recovered from this ride!

grey Coughing for CF   Cystic fibrosis inspiration  You embark on adventures which many people, even without CF, would consider epic. Why did you decide to cycle 5000kms from Hanoi to Singapore rather than simply holding a fundraising auction for CF?

People with CF shouldn’t plan holidays to places with pollution or plan indoors holidays (museums). The flights to destinations are enough of a challenge for our lungs. We need exercise. All my holidays always included exercise and outdoors activities. When I planned to cycle across Europe in 2007 my then doctor Reid said I should do it for CF… Ever since I’ve done bigger and more outrageous holidays (for someone with CF) as I discovered I could raise awareness and inspiration for people with disabilities.

Your goal is admirable, how difficult is it to make potential sponsors believe that you are genuine and to get them on board?

Getting sponsors is nigh impossible. Most of my sponsor requests are unanswered because so many people do so many wonderful things for so many worthwhile causes, large organizations get flooded with sponsor requests. After being presented with an order of Australia medal for international CF awareness raising and being featured on CNN I have become a little more credible to sponsors, but still they are extremely hard to find. Many companies also do not want to be involved with someone technically beyond their expiration date going for dangerous adventures. If something were to go seriously wrong they wouldn’t want to be associated with it. One day I hope to get a budget as well as a sponsor! Currently we rely on people’s donations to help with items such as a support vehicles. For this trip we found a kind sponsor who agreed to organize and rent our Vietnamese support vehicle, we only have to cover fuel and drivers food and accommodation expenses. Finding a support vehicle is never easy, but with the mountain of medicine I carry it is necessary. Keep fingers crossed for the other Asian countries we have to go through!

Of course all my adventures are saved up for and cheap airfares bought in advance, friends that join me all save up too. Thanks to social media we can spread the word much easier, and through our website offer people a link to either support the team or to directly support CF. 

grey Coughing for CF   Cystic fibrosis inspiration This time you are using electric cycles, how have they differed to the bikes you rode from Paris to Istanbul in 2007?

Cycling from Paris to Istanbul was sponsored by BATAVUS, a Dutch bike manufacturer. We were so pleased to receive the bikes we didn’t care what they were! They were wonderful mountain bikes, but we had to pedal hard. Not knowing I was diabetic at the time it was extra hard when my sugars went high or low. 

Now I have insulin injections with me and regulate my diet a lot better, but at the same time I am also a little older so I was thinking electric assist. I had experimented with electric assist bicycles at home and thought how cool it would be to put an electric bike through a proper test. I contacted a few bicycle manufacturers and distributors and was grateful to accept a good offer from the Australian Zoco Electric Bike distributor. They gave us fully suspended 200W central drive Zoco Rossas for the expedition. 

The biggest test for the bikes is the waterproof qualities and battery range as charging may be difficult and rains here are tropical. We are now well into the first week and are incredibly impressed!

grey Coughing for CF   Cystic fibrosis inspiration Has the hot, humid climate affected your performance in any way?

My lungs are mostly affected by pollution and stuffiness. I need to limit my pollution exposure especially carefully in Asian capitals. As a precaution I do extra careful nebulising treatments twice a day and take extra expectorants (Medicine to clear the lungs)… 

I have found that my performance in Asia is mostly affected by diet. I require a high GI diet, in Asia everything seems to be processed and sweet. Getting proper muesli and yoghurt breakfast in rural Asia is a difficult ask. Managing diabetes with high activity levels combined with an unusual diet is probably the biggest challenge for me now. Today for instance I ran low on sugars and had to make an emergency stop at a little stall in the mountains. 

I had little money left and bought/devoured a bunch of bananas and an iced tea to boost my sugar levels so I could reach the lunch-spot. I was the last of our four riders and the support vehicle was behind me. Nam the driver thought I was ‘tired’ as I was riding slow and thought he’d ride my bike up the next hill and let me drive! He had no idea my intention is to ride the whole way myself and that I was not tired, just low on sugar and needed lunch! The car was accidentally locked and I had to walk up a hill for 3kms with low sugar levels to find the team. Our driver had good intentions, but doesn’t speak English or understand my condition. I was furious to be left without phone, food etc and left to walk, but how could I be angry with such a well intending man! These are the real challenges I face.

You have to regularly nebulize to maintain lung function, does this put a strain on your riding schedule?

The nebulising time is annoying at any time. When I go to bed I have an extra hour of taking pills and nebulising, lung clearance, checking blood and injecting insulin… It takes an hour at least. The same goes for mornings. This means everyone gets 2 more hours sleep then me. If people say we get up ‘when we wake’, that doesn’t work for me as I need to wake an hour earlier. On my expeditions I feel responsible for communicating with sponsors, doing social media reporting, organising hotels and logistics. I take responsibility for the team members who come along with me and take responsibility for making the ride a success for everyone involved. 

grey Coughing for CF   Cystic fibrosis inspiration Lots of eyes are watching us. 

This sometimes makes my time off the bike a little stressful. 

I live for the moment I can just get on my bike and ride, rain or shine!

You once said in your blog that you are “on the wrong side of the life expectancy bell-curve”. How does your partner feel about you running off to foreign lands and pushing yourself as hard as you do?

Princess Ree is not so happy I do all these scary adventures. She’d much rather go on a holiday to Fiji with me. Ree worries about me and she is left at home for weeks and months at a time while I do my adventures. She is extremely proud of me and helps me organize the trips and help do fund raisers. However, I think if she had her way we’d just do a Club Med holiday together instead. Ree understands disabilities as she has her own problems, namely a few bits of titanium in her spine, chronic pain and nerve damage which stops her from being gainfully employed…and worse still unable to join me. We do manage nice romantic breaks together sometimes! 

grey Coughing for CF   Cystic fibrosis inspiration  How have the locals responded when they find out what you guys are doing?

The Tasmanian North West has completely accepted me as a local hero. Preceding my adventures I have a fundraiser or two and some media exposure. Everyone knows what I do and why. Workman in the street recognize me sometimes…many ask me why I don’t do a local adventure. Doesn’t ring my bell as much!

Finally I wanted to say good luck with raising your $5000 fundraising goal and that I’ll be following your journey with great interest.

Thanks Ben. 

 

So there you have it. I thought you may be inspired by my friend’s story. I sure am. You can follow Wals ongoing adventures here:  http://www.coughing4cf.com

4 Responses to Coughing for CF – Cystic fibrosis inspiration

  • Trudy says:

    Really great story. Thanks for sharing!

  • Vera says:

    This is amazing – I wish Walter all the best! The Camino de Santiago is probably not going to be his biggest adventure, but I have heard so many (and only) positive things about walking it, that it’s not only on my list, but that I’m somehow convinced it does something with you – and good vibes can’t hurt, can they? Very good, inspiring and informative interview! Thanks!

    • Ben says:

      He sure is Vera! Wal has really done some cool stuff and I really look forward to following his future expeditions, just hope I can arrange to join him one day :-)

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