Youtube

I found this video. A typical family that would love to see a documentary on a 42 year old with CF!

Curing Cystic Fibrosis through The Great COFE

Here is the grand plan as it stands. Remember the big picture is really to cure Cystic Fibrosis, and this can only be done through continuing research. Research requires money. Money can only be generated by bringing it to peoples attention. To cure people from CF you need to keep the people with CF alive till there is a cure, and that requires education and inspiration. These factors are all addressed in my great plan:

The grand plan for the documentary Coughing the Distance is now taking shape!
Lucas is sweating on the editing and cutting it all together into an inspiring and entertaining documentary. I am busy writing the book to go along with it ('my pamphlet'), and when we have a product ready - April 1 is our aim - we get into gear:

I want to print 1000 documentary DVDs and 1000 books and sent them to 1000 CF clinics/associations around the world. I imagine the RRP of the book would be somwewhere around the $24.95 mark and say $25 for the DVD. Mailing would be approximately $10, so I figured if I included a VOLUNTARY invoice for $59.95 (Don't you just love the 95c bit!). The proceeds would go to printing more packs and mailing them off to the next 1000 addresses, till we have covered the CF world. You got to think big!

Given that the DVD might cost $5 to produce and the book $20, postage $10, that would mean the first mailing would cost us $35000. If half the recipients pay the invoice we could afford the next 1000 copies... You sow the seeds...

This self-sufficiency thing really is amazing. We sow the seed, right. Nature grows the seed, and then, we eat the seed. And then, after that, we sow the seed, nature grows the seed, and then, we eat the seed. And then, after that again, we sow the seed, nature grows the seed....
The Young Ones - BBC 1984

In the mean time we would have sold the documentary to a TV network in Australia and paid back the creditors and monies owing (I know, business is business) and the documentary Coughing the Distance can then be passed on to an international agent who can sell the rights to networks abroad, CNN Health, BBC,... All profits generated from these sales can then go to Cystic Fibrosis Research, and in 2011, when I come back coughing from Coughing in the Sails, I can be cured!

QED.

Elementary my dear Watson!

So much better now!

Feeling so much better now! Amazing how the antibiotics do their job.
Went for a nice ride (see below track) yesterday dropping Katherine at the Latrobe station. What luxury to live in such nice fresh clean area where I can ride and cough!

Katherine thinks I need to make the bicycle ride from Paris to Istanbul into a children's book as well, showing drawings of me under the Eiffel Tower, coughing, and on dusty roads coughing, in big cities and surrounded by horse drawn carts coughing and then arriving in Istanbul with a little cough. I really like the idea! Good for young children with CF to see big people have big adventures and cough with CF, and that is OK!

Medicine woes

My lungs have been a little worse then normal lately, might be related to all the bugs going around at this time of the year. I am on inhaled antibiotics, but decided this morning I really should go back on 20 days of Augmentin Duo Forte, an antibiotic that brings my lung infection under control. Doc reckons I should probably be on and off this antibiotic regularly on a preventative basis.

So anyways, off I go to my local GP to get my 20 days worth of pills. They were able to squeeze me in immediately as it was only for a regular prescription issue. The standard prescription for this drug is 5 days. The GP gives me the first two prescriptions and tells me to come back before it runs out (next week) and he'll give me the next prescription if I still need it... I go to the pharmacy with my repeat prescription and ask if they can issue both. Sometimes they do, but this time when i came to pick it up they had only issued one. Come back in 4 days for the other repeat. This means I need to go in 4 times to get my regular 20 days, and two visits to the GP.

What does this mean to society? Here I am with pretty much anti-biotic resistant bacteria in my lungs which are having a flare up requiring treatment. To get the standard treatment I need two visits to the GP and sit in a room full of sick and susceptible people and visit the pharmacy on four occasions where more sick people congregate. And do you think I feel particularly well when I have trouble breathing and wake up coughing every hour of the night? No. Does the pharmacy care? ‘Oh, regulation blah blah blah,…’. They do not care, they hear it all the time, and they must be tired of hearing about it as they certainly were not very friendly when I brought the subject up at Terry White’s at Fourways Devonport. This pharmacy recently changed hands. I think I will change pharmacy after today's really rude reception!

Publicity continues

Today in The Advocate!

Also today I spoke to an elderly crowd at their monthly morning coffee at a respite centre in Devonport, Orana.

Lucas and Alex

Today I met with Lucas in Canberra to see how the documentary was progressing. We are running out of disk space and need to invest in some serious storage solutions. If anyone has any good contacts, and would like a credit on our documentary, helping the worldwide CF community please contact me!Here is Lucas and his girlfriend Alex:



Here is a COFE plaque I got from Lucas and Heather, they got it made for me in Istanbul! It will find a nice spot in my home!