Sweet FA - Living with Friedreich's Ataxia
For a long time Anne didn't know she had Friedreich's Ataxia. Her life was exciting, she was young and following her obsession to travel and see Australia. She remembers with good humour an early incident, when tired and unsteady on her feet she was picked up by the Adelaide police, who had come to the unfortunate conclusion she was on drugs. Without a medical explanation to offer they marched her down to the police station for an interview, after which she was allowed to go - but not without paying the price of wounded pride!
Friedreich's Ataxia is a rare hereditary condition caused by degenerative changes in the nerve tracts and nerve cells of the spinal cord and brain. It usually occurs in young people, generally before the age of 20. In the early stages the main symptom is unsteadiness of gait. As it progresses difficulties with speech, hand tremors, feet deformities and spinal curvature may be present. Book preface
Anne's parents had thought something may be wrong when she was around 16 years old, but never discussed it with her. She remained blissfully unaware during these early years ... Once she overheard some boys saying she must be drunk, but knowing she hadn't been drinking she assumed they must be drunk instead! When her father admonished her for not being able to carry a glass of water to the table, she practiced until she could. She was stubborn and she was a teenager, and these small problems were not going to stop her doing what she wanted to do. At this stage she still had no medical answers about what was causing the difficulties she was experiencing, her focus was on finding practical solutions so she could keep travelling. The doctor had simply told her she could be run down, advising her to slow down and learn to relax.
Over the next couple of years she continued to stumble and was tired most of the time - yet "life was pretty good fun". Her confidence and balance walking in large open spaces began to diminish. However, she was able to come up with plenty of excuses to hide the problem from friends. In Australia she lived out her dream, travelling the Nullabour and eventually working in the remote outback community at Wilpena Pound.
Towards the end of this period her health started to get worse and the coping strategies she had devised began to fail her. Subconsciously she knew something was wrong but didn't want to admit it - she "was just a young person who didn't want to think anything bad could happen to them".
Looking back, she wonders how she kept going and comments honestly that there were also times she would prefer to forget - times when she felt fear, desperation and frustration. "There are some things in life we hope never to recall. Our mind pushes them back hoping they'll reside there forever."
After returning to New Zealand, the progression of the Friedreich's Ataxia continued. Still noone told her about the condition and her fear and anger continued to escalate, until she thought it must all be in her mind. On an emotional rollercoaster, her trust in doctors diminished as she did the rounds of specialists and rehabilitation clinics hoping to find an answer.
"Oh, to be diagnosed early and told the truth as soon as possible."
These were the "worst, blackest and hardest days" but not the end of the story ... eventually there was a light at the end of the tunnel.
While acknowledging the emotional impact Friedreich's Ataxia has had on her life, Anne's nature is also to focus on the positive. She has found new interests and activities to fill her day, including painting, working, volunteering at the Paralympics and (of course) travelling around Oz. In telling her story she recounts amusing anecdotes along the way, explaining how she coped with the transition to using a wheelchair for mobility and "learning to be disabled". Dealing with the wheelchair was relatively easy - dealing with people's perceptions and attitudes was more challenging.
Sweet FA is a light hearted, personal account of living with Friedreich's Ataxia, as well as a motivational story about overcoming adversity. It is easy to read and relate to. Along the way Anne talks about her feelings, experiences and observations, providing a greater awareness of Friedreich's Ataxia that would be helpful to others in a similar situation, as well as carers and professionals. Contact information about FA clinics and support groups in Australia is provided together with an update on research to identify the FA gene.
"Very well written, could not put it down." Brendon Murvey
"You have greatly increased my understanding of Friedreich's Ataxia ... You have my respect and my admiration." Alan Jones, radio broadcaster
"Very well written, and easy to read. Love the story about the satin sheet. Must try it myself." Sharon Barclary
"Highly recommended." Pat Woolley
Sweet FA - Living with Friedreich's Ataxia is published in Australia by Wild & Woolley Pty Ltd NSW. It is available for purchase online from the Books and Writers Network or by mail order from:
PO Box 890
Maroubra NSW 2035
Cost: AU$30 including parcel & post in Australia
Overseas enquiries: firstname.lastname@example.org
End of Google links