LIVING WITH COPD

Living with COPDA Life Worth Living : a Book Worth Writing

NOTE: To replace a picture, just select and delete it. Then use the Insert Picture icon to replace it with one of your own!1My COPD Journey

Hi, Im Carol Cooper-Taylor and this is Sue Ward. Im going to start off by telling you about my COPD journey and then Sue is going to talk about a free ebook we have co-written with one of Sues colleagues, Carole Donnelly and my partner Phyl who is in the audience (Stand up Phyl).2Childhood

Born in Birmingham in the UK. Fairly uneventful childhood. Family lived with Grandparents until I was 1 YO. Grandfather smoked heavily. Died chronic bronchitis. Father smoked. Lived near a factory making batteries.At school I enjoyed sport but was no good a long distance running. However did come 2nd to Sonia Lanaman (in inter school trials) in 200 yards. Sonia won Bronze in 1980 Olympics. My one and only sporting claim to fame. Tenuous I know 3Young Adult

So this is me as a 1st year student nurse. Dont you just love the hair. As a young woman I had a chronic cough and was diagnosed as asthmatic by my GP. Respiratory care was not fantastic. Tell story of allergy test. Tell story of being taken off all meds. Tell story of Reg trying to put me on vallium.4Middle Age

Gradual decline. Insidious. Creeps up on you unnoticed. Fast forward to 2006. Now in NZ. Life had become work, eat sleep. W/e were used to recuperate enough to go back to work on Monday. Tell story of getting diagnosis in ChCh FEV1 37%. How shocked Phyl was. Effect on family and loved ones.Retiring early careful what you wish for Moving to Hawkes BayGetting worse ref to Greenlane missing appointment with Sue (Coffee shop chat)DEPRESSIONComing to terms with life in the slow laneHaving a life worth livingRehab. Lead into book

5How it all started

Can I have a quick word?So it struck me as a good idea that all the info I was being given at rehab should be in a book for all COPDers.

So after one rehab class I said to Sue Can I have a quick word

Turn to Sue and ask How do you feel about writing a book

And Sue said I will if Carole Will

Right one down one to go (rub hands together scheming)

So then I got hold of Carole D How do you feel about writing a book

Run round to the other side of Carole so Sue can be Carole D

And Carole D said I will if Sue Will

Got em (Thumbs up)

So now its ove to Sue to hear how things progressed.

6Purpose of the book

Aimed at patients and their carersEducation COPD from diagnosis to deathTo improve self managementIntroduce healthy lifestyle choicesTo offer practical self help tips and adviceAs a resource for staff / students / departments

See Forward by Rob page 9Lots of books on Asthma couldnt find anything on COPD as a whole ( bits on Drugs, bits on pulm rehab, bits on symptoms)This books brings it all togetherEduc about symptoms, treatment options and how to help themselves7Weekly meetings were started after rehab

We decided what each person was knowledgeable about and then gave the hard bits to other people

Kylie (from USA, working as a GP in Hawkes Bay)

Debs (respiratory scientist)

Michelle (ex respiratory nurse specialist now working in palliative care)

They were lucky just had to write in WORD and e mail to us.. More about a\that later!

It was mentioned to 2 respiratory consultants at this time as well..Sue was told later they thought it was one of her hair brained ideas!8Getting it on paper

Carole D and Sue were introduced to the cloud

Carol C-T was the brains behind the technology

Each of us worked on our own sections just getting it down

Carol C-T edited with a big stick

Phyl was the Jargon seeker!

Talk about google docs different colour text for each of usNew to Sue and Carole! Any technical issues .. Eg trying to copy and paste diagrams / text from previous presentations used in the rehab - Sent to Carol CT

Getting the info down: There was no rhyme or reason how this happened! Carole started with the role of the occupational therapist, Sue started with dietician!

The physio and the nurses roles were some of the last to be completed!9It was easy to start with.

Weekly meetings, easy feedback.Then Carol C-T and Phyl decided to move!

Suddenly it all became complicatedNo face to face meetings anymore.no more real paper!! Everything had to be done by us as individuals on the cloud now!!

Fortnightly Skype meetings were arranged, with much wine being consumed!

Carol CT continued encouraging us!We continued to encourage the contributors for their sections102 years later.

September 2013 1st Edition ReadySep 2013Anything extra we had planned to go in, or hadnt quite got round to finishing could now go in the 2nd edition eg travel, more about the carers, acupuncture, complimentary therapiesNow we had to go public!

Proof reading

Sharing the news with colleagues

Had kept it all very quietSympathetic people were chosen at random! To proof read. REACTION:: Shock when did you do that??!!

Several patients, a physio and a resp consultant were strong armed into doing this.Constructive feedback was provided.

And so the website was bornDontForgetToBreathe.org.nz

Carol C-T (as normal) was the brains behind this!

Domain (URL) was purchased. WordPress site createddontforgettobreathe.org.nz

Anyone can download the book (PDF)

Mailing list if people want to sign up News items added to the blog and emailed to the list

The 2 of us were unashamedlyyou can do this! We have no idea! We did a bitover to you13Hard copies

Hard copies have been put in many departments in Hawkes Bay Hospital, and are being used in GP practices throughout Hawkes Bay

We invite you to do the same in your own DHB / work area

14Statistics15CountriesAustraliaFinlandKoreaNZSpainAustriaFranceKuwaitPakistanSwazilandBrazilGermanyLatviaPhilippinesSwedenBulgariaHungaryLithuaniaPolandTaiwanCanadaIndiaMacedoniaPortugalThailandChinaIndonesiaMaltaRomaniaTurkeyColombiaIrelandMoldovaRussiaUKCroatiaIsraelMyanmarRwandaUkraine EstoniaItalyNetherlandsSingaporeUSAEUJapanNorwaySlovakiaViet NamWe had to improve our geography with knowing where these places are!16Questions?

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