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HomemistoryBlind Courage

Blind Courage

By the time you read this, brothers Lorin and Dean Nicholson will be well on their way to riding two tandem bikes across the brutal Nullarbor Plains.The 4,000 kilometre journey is a very tough assignment for any mere mortal, but it’s an even more brutal task if you’re vision impaired, as the brothers are.mivision was privileged to speak to Lorin and Dean about their mission improbable and discovered that their entire lives have been filled with overcoming obstacles.

The idea did not originate with Lorin or Dean, but with their sister Louise, who is also blind.

“Why don’t you do something really inspirational and ride across Australia,” was Louise’s suggestion to her older brother Lorin just over a year ago.

And it took him just a matter of seconds to decide “what a good idea”.

And when we finish this ride, we are going to climb the Sydney Harbour Bridge as the grand finale

But as soon as Dean heard about the plan, he was adamant that he would join his brother on the ride across this vast continent.

“Wouldn’t it be great for two blind brothers to do it – ride 4,000 kilometres across the country… not just to raise money for Vision Australia, but more importantly to inspire other blind people and in fact anybody with a disability,” says Dean.

Dean and Lorin Nicholson were born with retinitis pigmentosa leaving them with less than 10 per cent sight and legally blind their entire lives. Now with Lorin at the age of 41 and Dean, 40, their vision has deteriorated to less than five per cent.

And so too has the vision of their sister Louise who came up with the idea of the mammoth bike ride. She too suffers from the degenerative disease of retinitis pigmentosa that fortunately the remaining three sisters have evaded.

Lorin and Dean set off at day break from Perth on their amazing 4,000 kilometre journey on Monday 29 March and plan to ride their tandems into the Sydney Opera House on Monday 26 April.

“Our aim is to raise AUD$300,000 for Vision Australia – that’s one dollar for every blind or vision impaired person in Australia,” says Lorin.

“We want to inspire other blind people because there are some significant issues in this country such as 63 per cent of blind people unemployed. Obviously there are significant challenges to someone who’s blind, but with technology (computers, mobiles, etc) it makes it possible to overcome the barriers we once had. There’s the money of course, but more importantly it’s the raising of awareness.”

CITY/TOWN ARRIVAL DATE/TIME
Perth (WA) Depart Mon 29th, March,7am
Northam (WA) Mon 29th Mar, 1pm
Coolgardie (WA) Thurs 1st Apr, 11am, Depart 2pm
Kalgoorlie (WA) Thurs 1st Apr, 4pm
Norseman (WA) Fri 2nd Apr, 6pm
Ceduna (SA) Sat 10th Apr, 5pm. Depart Mon 12th Apr, 7am
Port Augusta (SA) Wed 14th Apr, 5pm
Mildura (VIC) Sat 16th, 5pm. Depart Mon 18th Apr, 7am
Hay (NSW) Tues 20th Apr, 12 noon. Depart 2pm
Narrandera (NSW) Wed 21st Apr, 5pm
Wagga Wagga (NSW) Thurs 22nd Apr, 12 noon. Depart 2pm
Canberra (ACT) Fri 23rd Apr, 5pm
Goulburn (NSW) Sat 24th Apr, 12 noon. Depart 2pm
Sydney (NSW) Mon 26th Apr, 12 noon. Final event/celebration

Growing Up

But riding bikes and trying to overcome ‘the impossible’ is nothing new to Lorin and Dean. They’ve been doing it all their lives… and doing it successfully.

They were born in the southern New South Wales city of Wollongong, but soon after, moved north to Tamworth where they grew up and went to school.

It’s Lorin who recounts the brothers’ times growing up with almost no vision whatsoever.

“We never read a blackboard in our lives. In our early years we had to rely on a very strong magnifying glass. It was the only technology we had to help us at school.

“In primary school we had enough sight to get by. The teachers used a lot of large print and we learned by what the teachers were saying and we did learn to read and write.

“We also had a special low vision itinerant teacher who came to help us once a week or once a fortnight, to give us some one-on-one lessons. In high school the teacher would photocopy things in large print and we could read it with a strong magnifying glass”.

The brothers say there were some issues at school with bullying to varying degrees, whether it be physical or even more upsetting, just being alienated and left out.

“In the playground Dean and I attempted to mix with the other kids as best we could. We could somewhat engage in sports using large balls such as soccer and basketball, but there was never a chance of tennis or cricket or anything like that”.

They say it wasn’t all bad and although Lorin and Dean hung around together a fair bit, they say there were a fair few friendly kids in their country town.

“We found a group of kids who were very accepting and helpful and fun to be with and we did make friends and that certainly helped… and you know what, we both finished high school and went on to become very successful in life,” says Dean proudly.

A Passion for Bikes

Despite the fact they were almost totally blind at school, the brothers had a passion for riding bicycles as youngsters and this was encouraged by their parents, particularly their father John.

“We used to ride around town delivering pamphlets as a part-time job,” Lorin recalls.

“We could both just see enough to avoid the cars and ditches. Sometimes we’d run through pot holes and what-not, but we got on our pushbikes and rode every day. In fact, I’ll tell you an amazing story,” Lorin recalls, explaining how at the age of 16 he rode 275 kilometres from Tamworth to Port Macquarie.

“I had 10 per cent sight and could just see the white line on the side of the road. I could hear the cars coming and I just got out of the way. My dad drove the car ahead of me and waited on the side of the road for me and we camped on the way. It took two and a half days”.

Not to be outdone, Dean chimes in: “I used to ride a lot more than Lorin when we were kids. In fact I had 20 different bikes through my teenage years. It wasn’t uncommon for me to do a 50km or 100km ride on the weekend just by myself. When we were younger we had just enough sight to get by and country roads were pretty quiet too. I used to ride out the back of the Tamworth area to spots where there were a number of dams and ride all the way back”.

“We had a number of falls,” says Lorin. “I actually ran into another kid on a bike once at a pretty high speed and went flying over the handlebars and broke my collar bone. That’s the worst injury I’ve received”.

“I’ve taken a few spills getting into some loose gravel, but really only lost some bark,” Dean recalls. “I ran into a boulder once and came off, but those accidents never really deterred us.

“Dad was very much a positive thinker and thank goodness he never wrapped us up in cotton wool. He knew we had to take a few risks in life. He would encourage us and we’d be out there mowing the lawn just like every other kid”.

Lorin reckons their mum on the other hand probably worried a bit, but she never really let on. “She would simply clean up our cuts and scratches,” he explains. “They are very proud of us and dad is one of our support crew on this adventure.”

When he completed high school, Lorin went to college in Sydney where he gained a diploma in remedial therapy, returning to Tamworth where he began working in sports medicine, doing deep tissue massage for 12 years.

“I passed with distinction and ended up treating some of the Olympic athletes. I have treated 30,000 people in my massage career. At first I worked with an osteopath and then started my own practice and although I gave it up seven years ago, I still do it part-time now”.

These days, Lorin works as a professional guitarist and motivational speaker, travelling Australia, New Zealand and America and also conducts a special anti-bullying program in schools.

“I started playing guitar at 13. I mostly play solo, but I have played with other people and have appeared at Vision Australia’s Carols by Candlelight broadcast on Christmas Eve by the Nine Network. I have played in bands, but I really didn’t want to be in a touring band and be away from home.

“I’ve been married for 17 years and have four children – two boys and two girls – and they can all see perfectly, as can my wife”.

As for Dean, after high school he attended Southern Cross University where he studied environmental science gaining a bachelor degree.

“Believe it or not, I then worked in a chemistry laboratory,” he says. “I would just try to get a contrast behind so I could see the mark on the bottle or test tube. I was testing water and waste water in the north west of New South Wales.

“For three years I worked in the Tamworth environmental lab then I became a waste water treatment manager for Tamworth City Council for three years. Then I went back to Uni and did a second degree in business and accounting and now I work for Bowdens Group Australia, a civil engineering company.

“I got married five months before Lorin and have four girls, all fully sighted. I had them checked and no issues there”.

What is Retinitis Pigmentosa?

Retinitis Pigmentosa (RP) is the name of a group of retinal dystrophies that cause degeneration of the retina of the eye. Retinitis pigmentosa is a disease of the eye that the affected individual is born with. The word ‘retinitis’ derives from ‘retina’ (a part of the eye) and ‘it is’ (a disease). It is a disease of the retina, though not a contagious one. The word ‘pigmentosa’ refers to an associated discoloration of the retina, which becomes visible to an eye physician on examination.1

Symptons

Typical symptoms of RP are what are commonly referred to as ‘night blindness’ and ‘tunnel vision’. Night blindness refers to a reduced ability to see at night time, but more than that it entails a diminishing ability to see in dimly lit conditions generally, as well as in judging changes in level such as steps and gutters. Adjustments to changes in light intensity are typically slower and sensitivity to glare greater than is the case with the normal, healthy eye. All this results from the eye having fewer and fewer photoreceptor cells with which to transmit visual images to the brain. 2

The common pattern with RP is for photoreceptor cells to be lost progressively from the outer edges of the retina. This causes a progressive loss of peripheral vision, meaning side, upper and lower vision. It is as if the affected individual is viewing the world through a narrowing tunnel. Unlike a person with a normal field of vision, the person with tunnel vision cannot simultaneously look ahead and downwards or sideways without using a scanning technique by moving the eyes. However, the central vision of the person with RP may remain largely unaffected for a considerable number of years, enabling the individual to continue to read, watch television and perform other visually detailed tasks. 2

There is no set or uniform age of onset of RP symptoms and no uniform rate and extent of vision loss. These can vary markedly from individual to individual and are not usually able to be predicted.2

Diagnosis

The diagnosis of RP relies upon documentation of progressive loss in photoreceptor function by electroretinography (ERG) and visual field testing. The mode of inheritance of RP is determined by family history. At least 35 different genes or loci are known to cause ‘nonsyndromic RP’ (RP that is not the result of another disease or part of a wider syndrome). 3

RP can be inherited in an autosomal dominant, autosomal recessive, or X-linked manner. X-linked RP can be either recessive, affecting primarily only males, or dominant, affecting both males and females, although males are usually more mildly affected. Some digenic (controlled by two genes) and mitochondrial forms have also been described.3

In Australia approximately one child in 3,000 births is born with RP. It is no one’s fault and RP can strike in a family with no known history of it. RP results from an imperfection in a tiny gene that causes an incorrect protein to be supplied to the retina. Over time this causes photoreceptor cells to die and progressive loss of vision results.1

Treatment

The progression of the disease can be reduced by the daily intake of 15000 IU (equivalent to 4.5 mg) of vitamin A palmitate.4 Recent studies have shown that proper vitamin A supplementation can postpone blindness by up to 10 years.5

Scientists continue to investigate possible treatments. Future treatments may involve retinal transplants, artificial retinal implants, 6 gene therapy, stem cells, nutritional supplements, and/or drug therapies.

Re-enactment

The origin for the current across Australia ride began three years ago when Lorin did a re-enactment of is ride from Tamworth to Port Macquarie on a tandem bike to raise money for Vision Australia.

“I did it with a pilot rider in front. We raised AUD$7,000 and we thought: ‘Wouldn’t it be great to do something national to inspire the whole country?’

“That’s where the whole idea came from. My sister Louise suggested riding across the country and I spoke to family and approached major corporate sponsors.”

So now the idea has come to fruition with four riders, four crew members and a full-time publicist already on the arduous journey. The riders are on two tandems – Dean and Lorin are on the back of each with two sighted pilots, friends John Eder and Grant Williams, up front.

The journey will take four weeks and a great deal of perseverance and courage… and it’s appropriate that the awareness and fund-raising venture be called ‘Blind Courage'”.

Lorin explains: “We are going to raise money through the media interest and the profile will be quite huge. We have big sponsors offering prizes. Cort Guitars is giving a signed celebrity autographed guitar which will be auctioned. Other companies are offering goods to be auctioned or raffled.

“The public can follow our journey through the website www.blindcourage.com, which will have a page where people can leave comments. They can sign up to Facebook and Twitter. They’ll be able to watch video clips through Optus Country and see what’s happening and there’ll be a donation link and a 1300 number to allow people to call.

“Our aim is to raise AUD$300,000 which symbolises a dollar for every blind or low vision person in Australia. Also the awareness is the greatest purpose of all of this”.

The amazing ride will take Lorin and Dean through Western Australia, South Australia, Victoria, New South Wales and the ACT, with the entire trip documented on the internet.

And when the Nicholson brothers do finally ride into the Sydney Opera House as conquering heroes, their whole entire family will be there – together for the first time in 18 years, including their blind sister Louise, an English teacher who is married to a student doctor in the United States, and who has just had her first child.

“Not many families can say they have three blind kids, but having said that, we are all successful.

“And when we finish this ride, we are going to climb the Sydney Harbour Bridge as the grand finale,” Lorin declares.

The Blind Courage Ride is sponsored by Virgin Blue Airlines, Optus Country, Cannondale Cycles, Bowdens Group, Water & Carbon, Kea Campers and ISP Media.

For more information and to sponsor Lorin and Dean on their Blind Courage ride, go to www.blindcourage.com
References
1. Retina Australia. Fighting Blindness. http://www.retinaaustralia.com.au/eye_anatomy.htm
2. Retina Australia. Fighting Blindness. http://www.retinaaustralia.com.au/rp_symptoms.htm
3. Wikipedia. http://en.wikipedia.org/wiki/Retinitis_pigmentosa
4. Berson EL, Rosner B, Sandberg MA, et al. (1993). “A randomized trial of vitamin A and vitamin E supplementation for retinitis pigmentosa”. Arch. Ophthalmol. 111 (6): 761-72. PMID 8512476.
5. Berson EL (2007). “Long-term visual prognoses in patients with retinitis pigmentosa: the Ludwig von Sallmann lecture”. Exp. Eye Res. 85 (1): 7-14. doi:10.1016/j.exer.2007.03.001. PMID 17531222.
6. Rush University Medical Center (2005-01-31). Ophthalmologists Implant Five Patients with Artificial Silicon Retina Microchip To Treat Vision Loss from Retinitis Pigmentosa. Press release. http://www.rush.edu/webapps/MEDREL/servlet/NewsRelease?ID=608.