Walter and the Mucous Monster

Katherine's children's book has arrived! Walter and the Mucous Monster looks fantastic. We are very happy with the result. The shipping took a little long as it came from the USA. We are still awaiting the postcards that we had ordered to go with them. The postcards are coming from VistaPrint, and we had hoped they would've been here by now.

We have been soo pleasantly surprised with past orders coming in well within the expected time-frames that we are now scared when they don't arrive just as quick the next time! Walter and the Mucous Monsters for instance arrived within the expected time frame, but we were sure they had been lost in transit! Maybe we are just a little nervous. August 14 is looming around the corner!

First book arrives

Wow, here it is. We got two boxes of books in the mail! Enthusiastically I drove to Katherine's work to officially open them. We only found my book, and not the Mucous Monsters. The Mucous Monsters were submitted for printing 11 days earlier, so we have no idea why they are not here yet. Just waiting for them and the documentary on DVD and I can go mail them out to those who preordered! The DVD is likely to not be available till 14 August, and there is no sense sending pre-orders out in seperate packages.

The cover colour looks a little purple and artificial, but hey, I am happy! I was proud to drop off my copy to the Tasmanian Library who had written to me months ago to advise me of my obligation to make a legal deposit: Legal deposit is a statutory provision which obliges publishers to deposit copies of their publications in major libraries in the country or state of publication.

Coming to a theatre near you!

Lucas has almost finished the documentary, and has it down to under 90 minutes! He hopes to have copies of the DVD available at the launch in Hobart at the www.anzcfnurses2008.com conference on 14 August.

There is no public show for Hobart yet, but we are looking for a venue to play the documentary on Friday evening, 15 August, if someone can come up with a place!

Also, STOP PRESS READ ALL ABOUT IT, we have a Canberra launch organised for the week after:

Wednesday 20 August at 3pm at the ANU John Curtin School of Medical
Research.
Gold Coin Donation for entry into the Finkel Lecture Theatre,
Building #131 Garran Rd, Acton
(http://transport.anu.edu.au/index.php)

Thursday
21 August at 6:30pm: The Canberra Southern Cross Club in Woden will show the
movie to up to 400 people.
Gold Coin Donation for entry in their Top of the Cross theatre. Remember they have Happy Hour
downstairs from 530pm.

I flew to Canberra last week to help finalise the documentary with Lucas. These are the planes we fly in and out of Devonport with - this picture taken at Melbourne Tullamarine Airport.


All those who ordered a pre-purchase will get them soon now! As soon as we get the books/DVD they will be mailed out!

Walter----

Counting down to Launch!

Yesterday late at night I finished my final draft of the book! This will have to do for the 2008 CF Nurses conference Edition!
I am very happy with it. Kathryn Whitfield has helped me greatly improve the text by making some key recommendations wrt to tense used in the book, and helped rewrite the first half of the book in which she culled all the extraneous unimportant bits to make it all more readable. So I need to bring this draft to the printers for printing and hope the book arrives in time for the conference on 14 August!


Also, at the printers right now is Katherine's children's book; Walter and the Mucous Monsters. We still owe the illustrator a final payment and we hope to sent that to him with a copy of the book! We got postcards made for the Mucous Monster as well as a general promotion tool. The postcard is the book cover itself.

Watch iReport on CNN

Here is the link! If you watch the 30 second commercial it follows straight on, please have patience.

iReport for CNN: July 5 part 2

Walter----

CNN

From: Frank Van Praag [mailto:fvanpraa@xxxx.com]
Sent: Wednesday, 9 July 2008 4:14 AM
To: walter@xxxx.com; jackie@xxxxx.com; connie@xxxx.com

Subject: Happy Birthday to Bruddah

Surreal... Here I am in my hotel room, 12.30 in the morning flicking through the 30+ channels on my TV before I retire for the night. Then I'm struck by a little text caption on the bottom left of the screen: "Walter van Praag"... Confusing, I thought. I'm sure I checked in as Frank van Praag - then I listen and look. It's CNN! Showing about 5 mins of footage of the great COFE with music and commentary. Mentioned the site, the music, and at the end the reporter wishes you a happy birthday! iReporter. Surreal! Now I'm going to sleep. Well done, bruddah.

10 Minute Teaser on line!

Coughing the Distance - Teaser from Jason Sewell on Vimeo.

CNN telephone interview

Got a call from CNN International! They wanted to do a radio interview with me! Apparently I am getting on CNN on 4 or 5 July, and again on a repeat on 8 July - my 43rd birthday!
The reason they got me was because 3 months ago I put the 3 minute teaser on CNN:'s i-report <here> .

Time to celebrate, and I have the perfect place.... See picture of The upstairs pub at the Blackthorne Inn.

65 Roses Day in Devonport

Was a nice sunny 15 degrees C. day in Devonport! Katherine my ambulance officer wife helped man the table of CF goodies at the Rooke Street Mall.

Katherine had worked all night last night and is getting ready to work all night again tonight... That is dedication for you. What a wife!


Tom from Devonport Patient Transport lending a hand in his lunchtime...


Sarah Webb from The Advocate was there to cover the story!

We sold most of our merchandise and we are only left with CF bumper stickers and over $250 in funds to Realise the Dream!

CF TAS in Hobart

Sunday we had the 7km and 11km City to Casino Funrun in Hobart. K and I did the 11kms of course. Also running was Dukey (aka Wayne) from 5H Hobart Hash. T-shirts were made up for the event and was sponsored by Blundstone!


On Tuesday we had the official CF TAS Cheque Presentation where Aaron (president) presented me with a $3000 cheque to contribute towards our project, and specifically the children's book. Their logo will proudly feature on the back of the cover of The Mucous Monster. The Southern Cross TV reported on the event.

Cystic Fibrosis FAQ

Most of you know about Coughing the Distance the upcoming documentary, but what do you know about Cystic Fibrosis (CF)? I have CF and I rode from Paris to Istanbul for CF Research and Awareness. So what exactly is Cystic Fibrosis? Read on!


Q: What is Cystic Fibrosis?
A: Cystic Fibrosis (CF) is the most common life threatening, recessive genetic condition affecting Australian children.

Q: How does it affect people?
A: CF affects primarily the lungs and digestive system, however with improved medication and treatment life expectancy has been extended considerably.

Q: Who gets CF?
A: CF is an inherited condition. For a child to be born with CF both parents must be genetic carriers for CF. They do not have to have CF themselves.

Q: How common is CF?
A: Approximately one in every 2500 babies will be born with CF. One born every four days.

Q: How many young people have CF?
A: Approximately 3000 and there are 1 million carriers in Australia.

Q: How is CF diagnosed?
A: In Australia, all babies are screened at birth for CF. A blood spot test is applied and if this test proves to be positive a sweat test will be done to measure the amount of salt in the sweat and it is with this test that a final diagnosis is made.

Q: What is their life expectancy?
A: The average age expectancy is around the mid 30s, but not so long ago that was teenage years or younger. The great improvement has been brought about by research.

Q: What are the symptoms of CF?
A: People with CF may have the following symptoms:

• Persistent cough, particularly with physical effort.
• Some difficulty in
breathing or wheezing with effort.
• Tiredness, lethargy or an impaired
exercise ability.
• Frequent visits to the toilet.
• Salt loss in hot
weather which may produce weakness.
• Poor appetite.

Q: Is there a cure for CF?
A: Cystic Fibrosis is not curable at this time. However, with today’s improved treatment most people with Cystic Fibrosis are able to lead reasonably normal and productive lives. A great amount of time, energy and money is being directed towards finding new and improved ways of treating CF and finally finding a cure.

Q: Is CF contagious?
A: CF is not contagious. Coughing is a frequent symptom of CF. Some people are afraid they may catch it, but CF is an inherited condition which is present at birth. You cannot “catch” CF and you cannot give it to anyone else.

Q: How is it treated?
A: Intense daily chest physiotherapy to move mucus in the lungs. 40 enzyme replacement tablets each day to aid digestion.

Q: Why have things improved?
A: Mainly due to research and better knowledge and management of the condition.

Q: Does the CF National Organisation receive Government funding?
A: No – The States receive funding to support the CF Community but no money for research.

Q: Is there a cure?
A: No – but it can be found.

Q: Why “65 Roses” Day?
A: “65 Roses” is a small child’s effort to pronounce his sister’s condition. As he couldn’t pronounce Cystic Fibrosis, he called the condition “65 Roses”.

Susie on WIN

The inside story

Was very special to be inside the studio at WIN TV and seeing Susie life! One of the highlights was tasting the **braised** Moroccan mini roast that Victoria Hansen prepared in the studio!

Ross Symonds my favourite newsreader from my past was there as well. Of course I did not recognise him :( My memory is like a seive!

Wake Up My Little Susie

Yes, it will happen tomorrow! Tune in between 10am and 11am for Susie!

Canberra trip

Lucas is filming me here. I am talking to the wooden cat! We have hours and hours of narrating and interviewing to do. We interviewed David one day, I met one of our sponsors today, we visited the hospital for a full lung function test - took hours and hours! I visited government departments to get tax concessions for our funding - to no avail. Life in the fast lane! Not getting around to my friends :( or families. Work to be done!

I should be on TV on WIN next Friday between 10am and 11am! I will try and tape it somehow and put it on the blog!

Walter----

Susie

WIN TV, will speak to me next week! I will see Susie at the Wollongogn studio next wednesday when they record for the week ahead. Yeah, watch out Susie, here I come. Keep an eye on this website for more info in the next week: www.wintv.com.au/susie/

All the other TV shows that we have approached have not responded. Sunrise is coming to Hobart in the very near future, but despite the dozens of approaches we made we have not heard from them. Their loss!

Thank you CF Tasmania!

CF Tasmania has just advised me that a $3000 grant has been approved and a cheque was mailed to me promptly! This is great news as I am incurring lots of costs lately. I am due to appear on WIN TV which requires travel at my own cost to Wollongong, I need to go to Canberra to film and discuss the documentary with Lucas. We have thousands of dollars to pay for professional services incurred with our project...

We hope to soon find an Australian TV network for the documentary and with a bit of luck obtain a pre-sale fee. It will get us out of deep water!

Thank you CF Tasmania! It could not have come at a better time!

CF Lifestyle

If you have Cystic Fibrosis like I do then you are bound to take a lot of medicine. Here is a list of medicine and other things that I take daily:

• Pulmozyne - every evening before bed with a nebuliser pump
• Cephalexin - antibiotic that reduces lung infections - I am usually on antibiotics of sorts
  
• Augmentin Duoforte - another antibiotic that I alternate with others
  
• Creon Forte - pancreatic enzyme I take with meals
• Cotazym-S Forte - pancreatic enzyme I take with small snacks
• Ventolin Inhaler - twice a day a couple of puffs
• Seretide - a long term broncho dilator (steroidal)
  
• Fluimicil - a mucolytic I have to get from overseas which I take prior to doing exercise (no subsidies for this at all!)
• Kefir - a yogurt kind bacteria I culture myself and drink which effectively stops my stomach from aching.
• Hypertonic Saline - every morning with a nebuliser pump to do my lung clearance techniques with
  
• Lantus injections - every night to keep my sugar levels low
  
• ABDeck Vitamins - specialised prescribed vitamin supplement or CF
  
• Injecting pen - for the insulin
  
• Pen Needles - every night a new needle of course
  
• Colloidal Silver - an alternative medicine that helps me - prior to 1938, colloidal silver was widely used by physicians as a mainstream antibiotic.
• Vitamin Supplements - a draw full of various supplements to help with metabolism, breathing, immune function, bone health (people with CF typically have osteoporosis as well). - none are subsidised
• Ensure hospital strength - a protein meal supplement I mix in with my kefir (not subsidised either)
  
• FOOD - I have to eat lots of healthy food. People with CF have double the appetite and double the need for good nutrition. This is not a cheap diet.
• SPORT - Anything to do with sport is expensive. I must do sport regularly and fot this I need gear. Without the right gear you get injuries and do not enjoy it (making it harder to convince myself to go out and do it!).

Living my life does revolve around staying healthy and taking the right medicine at the right time. None of this is easy as you understand, but certainly very doable. Everything comes naturally, I know what I need when I need it. Something you get with experience!

Here is a list of sports items I own and regularly use to get me to go out and exercise my lungs. I can do one or two days at most per week without decent exercise or else my lungs congest. Most of my equipment is of minimum amateur standard, nothing is extravagant. I use a basic heart rate monitor when I run to encourage me to stay above 120 beats per minute, I run on good running shoes, I have a great bicycle so I can ride and change gears smoothly and easily, stop when I need to and be safe on the road with. I have a bike computer to encourage me to ride at a minimum of 20 km/hr (if I am fit and well). I have a kayak and paddles, a car with a roof rack... I have all the toys. All comes at a cost, and all are slowly accumulated. I have a mobile phone in case of emergency. I own a good back back, hiking tent, sleeping bag and related gear. I have a great collection of sports wear to hike, run and cycle in.

When Katherine comes home from work she will ask me what I did for work today, meaning which sport I did for an hour or more. My job is to stay healthy, which means I must eat lots and exercise lots! This is an expensive lifestyle that many would consider a luxury. I must say I do enjoy it and feel privileged to HAVE TO DO IT. But this costs money... Participating in fun-runs or other events costs money, running in the Hash House Harriers costs money... everything costs money. Volunteering for things in the community, Lions Club, Lillico Penguins, Bushcare,... it all requires transport to and from and often other related costs - like needing a second car to begin with (and which we have!).

Andrew Denton?

Several people have volunteered me as a guest for Andrew Denton! If you like to make a comment (which will improve my chances of getting on air with Denton!) go here: http://www2b.abc.net.au/guestbookcentral/list.asp?guestbookID=29 and look for me. Leave a comment. Turns out I have been suggested by others too, just do a 'search suggestions' and look for name WALTER.

SUPPORT IS NEEDED

We did not manage to get the LJ Hooker support we hoped for as LJ Hooker has a strict contract with CF Australia dictating where all their donations go to. That is OK, it still goes to Cystic Fibrosis! We are continuing with our fund raising.

But WE NOW NEED YOU! We need you to pre-purchase the books and the DVD to help us fund the printing and production! Go to www.coughingthedistance.com now and help us out!!

Remember that profits of the movie will go to CF research and profits of the books to go to CF Associations! And the more we can print the more we can send to CF clinics to give inspiration where it is needed!

Walter----