The Independence of Friedreich’s Ataxia and its Relationship to Scoliosis and Cardiomyopathy

August 7th 2017: Friedreich Ataxia’s News included the following definitions for Scoliosis and Heart disease—

Scoliosis

Weakened core and leg muscles can lead to aggressive scoliosis or curvature of the spine in many patients.

Heart disease

Around three-quarters of people with Friedreich’s ataxia will develop some form of heart disease, usually hypertrophic cardiomyopathy which is when the heart muscle becomes thickened.”

Continue reading “The Independence of Friedreich’s Ataxia and its Relationship to Scoliosis and Cardiomyopathy”

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The relationship between Nystagmus and my individualistic style of Friedreich’s Ataxia

Below is a definition of Nystagmus as derived from Wikipedia:

Nystagmus is a condition of involuntary (or voluntary, in rare cases) eye movement, acquired in infancy or later in life, that may result in reduced or limited vision. Due to the involuntary movement of the eye, it has been called “dancing eyes”.
Continue reading “The relationship between Nystagmus and my individualistic style of Friedreich’s Ataxia”

Job on a Dunghill

My time in shared supported accommodation has had a significant impact on the deterioration of my disability. This attains to using the phrase ‘on a dunghill’ as a description of my life in a shared supported facility. This term of expression gives readers an idea of the ugly reality; of the helplessness, immobility, failure to speak and see. The loss of my control and dignity manifests as motivation to change the delivery of care in the disability sector. Continue reading “Job on a Dunghill”

Poster: 6 and a 1/2 Years on a Dunghill

Here is the poster my team and I have created for 6 and a 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation. I believe the book contributes immensely to the current debate surrounding the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability. Continue reading “Poster: 6 and a 1/2 Years on a Dunghill”

#RoyalCommissionNOW

In my book 6 & 1/2 Years on a Dunghill: Life in Specialist Disability Accommodation, I have so eloquently expressed the need for 4 key elements in the disability sector: passion, empathy, altruism, and pragmatism. This is very clearly on display by Senator Jordon Steele-John in his speech linked below. I highly encourage everyone to take some time to watch this emotional, awe-inspiring speech.

Senator Jordon Steele-John also adds the following to his video:

I gave this speech last year in dedication to those members of my community who lost their lives due to violence, abuse and neglect.

Their voices remind us why we are fighting for justice. In their names we go forward.

#RoyalCommissionNOW

 

My ‘Design for All’ Guest Editorship

It is such a joy for me to be asked to be the guest editor for Design for All, and I have invited a handful of incredible people to share their perspectives. First, my good friend Steffan Irugalbandara brings to the fore his beliefs concerning failure and the positive steps that may become issues from it.
Currently, I have many close friends who have migrated from Sri Lanka. This brings me to an article that I coauthored where we talk about my friendships, Sri Lanka’s devastating effects upon that country from the civil war and the tsunami which still has a profound effect upon the friends who have encouraged me in this article. That being said by way of introduction, we then look more broadly at Sri Lanka and people with severe disabilities.
Next is a book review from a dear and close friend of mine, Bruce Wearne. Bruce was there throughout every stage of this book and whenever I was in a situation where I was in need of help he was always there, a great friend. Bruce also follows with a brief writing on the social aspects of Friedreich’s Ataxia.
Next my good friends from the Friedreich Ataxia Clinic share their expertise in their respective fields pertaining to the care of Friedreich’s Ataxia. Professor Adam Vogel writes on the complexities of Friedreich’s Ataxia and speech therapy. Associate Professor Louise Corben highlights the strains on mobility that Friedreich’s Ataxia patients endure, and how they can be overcome with suitable, individualised disability equipment. Finally Professor Martin Delatycki gives background on Friedreich’s Ataxia for anyone who wishes to learn about the disability.

And finally, is my book’s abstract which basically runs along the lines of the dangers of organized care becoming careless.

Read it here: Design for All

NEW BOOK: Six And A Half Years On A Dunghill

Preface

 

This 6 ½ years (July 2011 – February 2018) in shared supported accommodation, has had a significant impact on the deterioration of my disability. This attains to using the phrase ‘on a dunghill’ as a description of my life in a shared supported facility. This term of expression gives readers an idea of the ugly reality; of the helplessness, immobility, failure to speak and see; and of course the power of irritation towards the delivery of life circumstances pertaining to the disability sector. This bureaucratic mess is subsequent to a lack of true empathy, which may conflict with any budget bottom line, thus enforcing the creation of social dilemmas which then draws attention away from the original problem. This is something that can also be performed by non-government authorities, as is seen in my own circumstance.

Continue reading “NEW BOOK: Six And A Half Years On A Dunghill”