WEDNESDAY is World Multiple System Atrophy (MSA) Awareness Day and Redland residents are being asked to join with people around the globe in recognising the day by walking a mile in honour of people who are living with MSA or by lighting a candle for one hour from 8pm.
The condition is a rare and degenerative neurological disorder that affects nerve cells in specific areas of the brain, causing problems with autonomic body functions, including balance, memory, breathing, bladder control, muscle control, blood-pressure regulation and more.
There are about 340,000 people around the world living with MSA, one of whom is Thornlands resident Pamela Woolford.
Pamela, 56, said she first began experiencing disc degeneration in her neck in her early forties and was diagnosed with MSA in 2006.
Each day, the former professional singer and medical typist lives with stiffness and rigidity in her muscles, tremors that mimic seizures, slow speech, memory loss, feelings of numbness in many parts of her body, breathing and vision difficulties, and many more debilitating symptoms.
"I could sing sentences without taking a breath once and now I can't even speak a sentence without becoming breathless," she said.
"There is no cure for the disease and you just don't get a break from it at all.
"It's a huge disability in a big way.
Pamela, whose husband Richard is her carer, said the only treatment available to her was for symptoms of the disease, not for the disease itself.
"It's extremely painful to live with," she said.
"It's an existence, not a life any more."
Pamela said she encouraged anyone with symptoms of degeneration to report them to their doctor.
"Too many people have been misdiagnosed because they don't give all their symptoms to their doctor and don't report changes when they happen or get worse," she said.
"People should report any tremors or body changes early and also watch for symptoms in relatives and friends and encourage them to see a doctor if they notice anything."
Pamela, whose father turns 81 on World MSA Awareness Day, said she was grateful to her family for their help.
"It's an insidious disease that is very debilitating and you need people to help you with everything from getting out of bed to bathing and even eating," she said.
"Support and assistance from family is important to help you get through."
l To help raise awareness of MSA, Pamela is inviting locals to join her and Richard tomorrow on a one mile walk along Raby Bay Foreshore Park and Masthead Park Reserve, in Masthead Drive, Cleveland from 3pm tomorrow.
"Richard will push me in my wheelchair for one mile and I'll also light a candle for MSA Awareness Day at 8pm," she said.
"I hope people will come out and join us on the walk.
"The more, the merrier."
On the walk, Pamela will also sell copies of the three children's books she has written.
The books cost $10 each and the proceeds will go to the Australian and New Zealand MSA Awareness Association.
