It has been eight and a half years since I moved into the shared support accommodation facility where I now reside. For socially conservative reasons, pertaining to cost-benefit analysis, there has been a significant, tangible and intangible failure of choice and control. For the past eight and a half years, continuously undergoing the strains of living in this group home has had a detrimental effect on me — as I have written about in previous works.
Under the current disability support system that I am a part of, my support provider receives a sum of money from the NDIS, known as the ‘SIL’ (Supported Independent Living). They may have been allocated quite a large amount of money, but as I experience it they treat me in a very flippant manner.
In seeking to treat all people with the same level of care and compassion, is it right to expect an equal outcome from all? Continue reading “A ONE SIZE FITS ALL POLICY DOESN’T FIT ANYONE”
I am writing an open letter to the NDIS once more in the hopes that my current situation is alleviated. Continue reading “Another open letter to the NDIS”
NOTE: This is another one of my short articles that, among other things, gives expression to some or other aspect of my condition and the difficulties I face in getting these matters corrected. In previous articles about my physiology my concern is to describe the kind of progressive reduction that comes about under a degenerative muscular condition such as Friedreich’s Ataxia. Here I focus upon a problem with technology and how the problem interacts with my disability. I hope these articles can be helpful to others undergoing similar circumstances and assist carers and family members to devise creative strategies to overcome the persistent frustrations (P.G) Continue reading “Another possible submission to the Royal Commission”
The following is from a study was published in The Journal of Stereotactic and Functional Neurosurgery:
“About 11-15% of patients with Friedreich’s Ataxia experience painful muscle spasms or muscle contractions, but little is known about the underlying processes that cause this complication.” Continue reading “The independence of Friedreich’s Ataxia and its relationship with deteriorating muscle spasms.”
August 7th 2017: Friedreich Ataxia’s News included the following definitions for Scoliosis and Heart disease—
Weakened core and leg muscles can lead to aggressive scoliosis or curvature of the spine in many patients.
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.”