Did I Deserve 7 Years of This Imprisonment?

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?”

Advertisements

Monash Human Library and New Book

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”

Furthering Mutual Respect: Some Thoughts on Giving Sexuality its Due and Friedreich’s Ataxia

 Introduction:

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”