WHILE the diagnosis of motor neurone disease is shattering for Flinders resident Adam Regal and his young family, he has vowed to keep fighting and increase awareness of the disease.
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After losing his uncle Garry and father Steve to the disease during the past 10 years, 30-year-old Mr Regal was diagnosed with MND last year.
His thoughts immediately turned to wife Kylie and their two young children.
Mr Regal's diagnosis came not long after his father died and was like a "bolt from the blue".
"Not long after dad passed away, I visited the doctor to check on pain in my back and told him about numbness in one of my toes and he said that, although it probably wasn't anything to worry about, we'd check it out," Mr Regal said.
"He rang me a few weeks later with the news, which, of course, stunned the whole family."
"At first we only told our family; I wasn't sure how the kids would take it.
"I have since told them and my son - seven-year-old Aijay - in particular is asking lots of questions, and that is good for us and helps us all cope."
There is no cure for MND but instead of waiting for the inevitable, Mr Regal and his family have established a group called The Regal Regiment Fighting Fund, which they hope will help raise the profile of MND as well as raise funds for research.
"My sister Amy is already arranging a team to represent the Regiment at [the] Sydney Running Festival later this year, while other fund-raising events will also be undertaken.
"The Regiment [aims] not only to raise funds for Professor Dominic Rowe from Macquarie University with his research but, most importantly, to raise awareness of this terrible disease.
"So many people who hear you have MND ask about it and really have no idea, so we are hoping that by publicising our plight, we might be able to raise awareness."
WHAT IS MND?
Motor neurones are nerve cells that control the movement of voluntary muscles, that is, muscles that are under conscious control. These include all the muscles of the arms, legs, back and neck and of speech, swallowing and breathing.
With no nerves to activate them, muscles gradually weaken and waste and paralysis ensues. Weakness is often seen first in the hands or feet, or the first sign may be swallowing difficulty or slurred speech. Muscle twitching and/or cramps may also occur.
In most cases the senses are not affected.
MND affects each person differently in respect of initial symptoms, rate and pattern of progression and survival time.
