Fiona and Peter Bell have a quote on display inside their Tenambit home.
“We may not have it altogether, but together we have it all.”
Mrs Bell lives with aphasia, a condition caused by damage to the brain, since she had a seizure in 2005.
She spent 12 weeks in two hospitals and lapsed into central nervous system vasculitis, which caused swelling in the brain.
It is thought her condition came about after a mosquito or tick bite.
She endured five years of chemotherapy, which she has completed, seven years of steroid treatment, which caused significant weight gain, and all the while she has had devoted husband Peter by her side.
They have celebrated their 30th wedding anniversary and have two adult children.
“Peter is my rock,” she said.
“I feel fine now. I have started walking and speech pathology and I have lost 32 kilograms. I hated being fat. I put on 23 kilograms in two months because of steroids.
“Physically, I have trouble finding words, I am slow at reading and spelling. I have no skills for maths or numbers.”
Mrs Bell’s peripheral vision is also affected, so using stairs can be difficult.
“But the thing I miss most is my work,” she said.
“I loved to work in my gift shops. I was manager of two shops, one in Newcastle and one in Maitland.”
Her passion now is as a founding member of the Aphasia Communication Group in Maitland, which supports people with the same condition.
“It is about holding one another’s hands, encouragement and being positive,” Mrs Bell said.
“People do not improve if they are negative.
“There is nothing to be embarrassed about at our group.
“We are there to feel safe and supported.”
For some people living with aphasia can mean staying at home, feeling sad and losing lots of friends.
“That’s why our group is so important,” Mrs Bell said.
“It provides a social outlet and practice with speech, writing and using numbers.”
The new group started in February 2011 with four members who make up a theme each week to discuss and start a conversation.
By 2012 the group had grown to eight members and eventually outgrew its small meeting room.
Now they meet in the neighbourhood centre auditorium and the group has continued to grow with 23 members.
What is aphasia?
- Aphasia is an acquired language disability caused by a brain injury such as stroke, head injury, tumours, infections or inflammation in the brain.
- It affects talking, listening, reading, writing, using numbers and gestures.
- Only 7 per cent of the public know about aphasia.
- More than 80,000 Australians are affected.
- It is more common than Parkinson’s disease.
People with aphasia:
- Finding the right words can be difficult.
- Most people with aphasia can improve.
- It can take a long time to process information.
- Aphasia can make you feel anxious in everyday situations.
- Silence gives the person time to think and answer.
- Give the person time to talk.
- The person is competent and intelligent with thoughts, opinions and emotions, problem solving skills and making decisions.
- Social interaction is important.
Aphasia Community Group
The group meets every Friday from 10am until noon at Maitland Neighbourhood Centre, Arthur Street, Rutherford.
It offers support to anyone with aphasia, from mild to severe.
Members work on improving their speech and writing, such as a crossword, word or number exercises, and everyone is encouraged to take part.
The group is the only one of its kind in the region.
It will host Australian Aphasia Awareness Day, called Friday With Friends on Friday, September 11 at 11am, at the neighbourhood centre.
Entry is free and gold coin donations will be welcomed.
Guests will include speech pathologists Amanda Schumacher and Belinda Beaumont and neighbourhood centre manager Naomi Rees.
RSVP is September 5 by calling 4932 0950.