The below is written to give an acknowledgement to professor Martin Delatycki and doctor Louis Corben for their expertise in the medical conclusions of Friedreich Ataxia.
“Dr Peter Gibilisco was diagnosed with Friedreich ataxia at the age of 14 years. He is now 55 years old. Friedreich ataxia is a rare, progressive neurological condition. The main symptoms of the condition include initial unsteadiness in walking, fatigue, sleep disturbance, incoordination of the upper limbs, reduced balance, reduced hearing, difficulty speaking and significant heart involvement. The affected person eventually loses their capacity to walk and becomes dependent on a wheelchair for mobility. In addition they increasingly require assistance with most personal care tasks as the disease progresses. To date there is no known cure for this life-shortening, devastatingly progressive and debilitating condition. Continue reading “Did I Deserve 7 Years of This Imprisonment?”
I don’t have the capabilities to type on my own, without the assistance of my academic support worker; but, over my 56 years, I have developed a drive to achieve the improbable. Continue reading “3 Hours…”
As a person with a disability, I am often told I have special needs. This may be, but to my mind, it’s more useful to say I have special problems. Continue reading “Innovation and disability – Mark Brown”
Last week, on March 29, I was a keynote speaker at the Monash Human Library which was held in the Peninsular campus. This was conducted to an audience of about 100 OTs – both students and professionals. My keynote speech explored the individualistic pursuits of Friedreich’s Ataxia which can be summarised as follows: Continue reading “Monash Human Library and New Book”
I want to discuss a disorder that afflicts me. Friedreich’s Ataxia (FA) will eventually leave the person afflicted with severe socioeconomic and medical restrictions. And because of this many people with FA are constantly subjected to stereotypes, as losers. We are unfairly harassed, and our abnormal features and functions as a result of the disability doesn’t make our life any easier. Believe me. My experience is that many people – it doesn’t matter what walk of life – believe they know best for an FA suffered and will then apply the stereotype to tell them what they can and can’t do.
Does this sound fair to you? Continue reading “Furthering Mutual Respect: Some Thoughts on Giving Sexuality its Due and Friedreich’s Ataxia”
My ongoing request is a complaint, like the persistent complaining of a broken record. It is simply pointing out the fact I have no cognitive impairments, just purely Friedreich’s Ataxia.
Continue reading “Six and a Half Years of **it”