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A Life Worth Living - Abilities, interests and travels of a young disabled man A Life Worth Living
Abilities, interests and travels of a young disabled man

Jonathan Colchester

ISBN: 978-1-902019-06-2

(Old ISBN: 1 902019 06 7)

200 pages, paperback, 146mm x 208mm.
16 Colour photos, 8 black and white photos, 7 drawings

Published by Greenridges Press, January 2003.
Reprinted January 2004, January 2008, March 2016.

Price: £9.99 + Postage and Packing:

Profits will go to the Muscular Dystrophy Campaign.
About the Book

We are sad to report that Jonathan ('Joni') Colchester died on 11 October 2010, at the age of 43. For more information, see "Our Latest News"

Joni was a happy and contented baby who started to walk at 15 months. But when he was two he started to fall frequently and at the age of five he was diagnosed as suffering from the cruel genetic disease of Duchenne Muscular Dystrophy. As a boy of 10 he became permanently wheelchair-bound, and from the age of 22 he found himself increasingly reliant on a ventilator in order to breathe. A fan of prime rib steaks in his youth, at 35 years old – when his book was published – he had a diet of liquid food and supplements.

A Kingfisher Yet in spite of all his physical problems, thanks to his dedicated parents and his strong Christian faith, Jonathan never stopped getting the most out of life and living it to the full. He enjoyed extensive travelling in the US and Canada and flewn on Concorde twice. He was an accomplished artist and spent much time painting on paper, stone and slate and drawing landscapes and animals until he became too weak to hold a brush or pen. His favourite hobby was bird-watching, which he could do at numerous nature reserves with the aid of a portable ventilator.

At home in his flat in Chester, he used a computer, telephone and Possum system by means of a micro-switch, and he got a lot of pleasure from watching videos and reading. The Internet opened up new horizons for pursuing his birding hobby and keeping in touch with friends. Becoming an uncle brought him great joy.

This moving autobiography was written to give doctors, carers, therapists and other patients’ families an insight into Muscular Dystrophy and how sufferers can cope with it. He said: “I also want to demonstrate that it is possible to overcome severe disability and lead a fulfilling life while at the same time adapting to the changing patterns the disability imposes.”

Profits from the sale of the book go to the Muscular Dystrophy Campaign.

   

   

   

The Author

The Author

A brief summary of some key events in his life:-

Age 5:     Diagnosis of Duchenne Muscular Dystrophy.
Age 5:     Used a bicycle with stabilizers.
Age 5:     Attained 10 metre swimming badge.
Age 9:     Used the wheelchair occasionally at school.
Age 10:   Wheelchair bound.
Age 15:   Back operation.
Age 16:   Painting on stones, slates and on paper.
Age 20:   No longer physically able to paint.
Age 22:   Ventilator used for the first time on average 9hrs in 24hrs.
Age 23:   Resumed an earlier, less physically demanding, interest for pen and ink drawings.
Age 27:   No longer able, physically, to manipulate and coordinate the pen for ink drawing     .
Age 27:   A portable ventilator came on the market and was purchased. It was a great liberator in that I could leave home for day trips or weekends away.
Age 29:   A full liquid diet of ‘Ensure’, supplemented with small amounts of cheese, chocolate, and mousse-like ‘salmon poacher’.
Age 29:   Time off ventilator: maximum 5hrs in 24hrs. My time off the ventilator varies according to the atmospheric conditions such as temperature, humidity, wet weather and of course whether or not I have a cold.
Age 34:   Review of my diet/calorie intake, resulting in a substantial increase of calorie intake and, of course, energy.
Age 35:   Time off ventilator: maximum just over 3˝ hrs in 24hrs.

Reviews
Pat Wisniewski, Centre Manager of the Wildfowl and Wetlands Trust reserve at Martin Mere has reviewed the book is the Autumn 2003 issue of the Wildfowl and Wetlands Magazine. To see the review, click here.

__________
Target MD Magazine Winter 2007
Joni was interviewed for the Winter 2007 issue of the Target MD magazine. This is the magazine of the Muscular Dystrophy Campaign.
You can visit Muscular Dystrophy Campaign website at www.muscular-dystrophy.org and details of the magazine are to be found at www.muscular-dystrophy.org/information_resources/publications/target_md.html
__________

Contact Details

Following Joni's death on 11th October 2010 copies of the book can be obtained from Anne Loader Publications. Each book costs £9.99 plus postage and packing and the profits go to the Muscular Dystrophy Campaign.


STATUS - Available

The book was launched on at a party for 50 people on 25th January 2003 at Crabwall Manor Hotel near Chester. Joni made a short speech in which he thanked everyone who had helped him with the project and introduced Professor Richard Edwards, Emeritus Professor of Research and Development in Health and Social Care at the University of Wales. Professor Edwards has known Joni for more than 20 years and expressed the view that his book would be an inspiration for many people with disabilities as it showed what could be achieved by someone determined to achieve a goal. Many people with all their parts fully functional had achieved a great deal less than Jonathan has managed to do.

You can hear Joni's speech by clicking this link. It is a file of 1.2 Mb so if you have a dial-up link it will take some time to download.

October 15th, 2003. We were delighted to hear today that Joni has been able to send a donation of £2500 to the Muscular Dystrophy Campaign, the profits from the sale of his book to date. As a result of national publicity sales of the book are growing and the first print run is now nearly sold out; we expect to reprint shortly.

January 2004. The book has been reprinted.
January 2008. The book has been reprinted.


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