Doctor diagnosed with Motor Neurone Disease knew she'd be 'locked in her own body'

Within six months of diagnosis Dr Reilly had stopped working and was using a wheelchair. Photo / Supplied

As a doctor the implications of being diagnosed with Motor Neurone Disease (MND) did not escape her - Dr Claire Reilly knew she'd eventually be "locked in her own body", unable to move, speak, swallow and even breathe on her own.

Her first signs of the disease were small - one day she just tripped, the next she had trouble with a button. Then one day while brushing her teeth she noticed a muscle in her hand had wasted away.

Being a doctor, Dr Reilly had her own list of what this could mean - MND was at the bottom of this.

"Going through medical school we all agreed this was the one disease none of us wanted to get - not least because there is no effective treatment and no cure."

Claire Reilly a doctor with Motor Neurone Disease organising a fundraising walk. Photo / Supplied

Within six months of diagnosis Dr Reilly had stopped working and was using a wheelchair. Today, eight years on she can no longer walk, run, hug and hold - she needs a carer 24/7. She spends a large proportion of her day reclined in a chair because her neck muscles won't support her head.

"I never have privacy, so that can be quite tiring, always having to have someone with you all the time," she said. "I can't swat a fly away, scratch my head or blow my nose."

Dr Reilly's ability to communicate is also dwindling; she relies a lot on email with the help of assistive technology and has also prerecorded her voice for the day when she can no longer talk.

While life was challenging and she could no longer practice as a doctor, she did not want pity and was keen to help others for as long as she could.

To do this Dr Reilly's organised a nationwide charity walk with the Motor Neurone Disease Association of New Zealand to raise awareness and funds to go towards researching it.

"If I can't be a doctor I want to help create awareness for those who can't speak for themselves," she said. "The problem with a disease like MND is that it is often so rapid, so debilitating, that those affected never get a chance to be heard."

The walk, the first to be held nationwide, will take place in Auckland, Hamilton, Tauranga, Wellington, Christchurch and Dunedin this Sunday.

A number of Kiwi sporting greats and other personalities, such as cricketing legend Sir Richard Hadlee, broadcaster John Campbell and the local mayors of each city will be at the event.

Participants will be able to go on a wheelchair- friendly, five to three kilometre walk, bid in an auction and partake in other fun activities for both kids and adults.

Funds raised from the event will go towards supporting MND research in New Zealand.
To find out more go to: http://walk2dfeetmnd.co.nz/

About MND

• It leads to the death of the nerve cells controlling the muscles that enable people to move, speak, breathe and swallow
• It affects more than 350,000 of the world's population
• There is no effective treatment
• 300 people with MND are living in New Zealand at any one time
• Each week in New Zealand six people die and six are diagnosed
• Most common age of diagnosis is between 50 and 70
• The average life expectancy is 27 months - just over two years

To find out more go to www.mnda.org.nz