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Another open letter to the NDIS

I am writing an open letter to the NDIS once more in the hopes that my current situation is alleviated. 

Another possible submission to the Royal Commission

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)

The independence of Friedreich’s Ataxia and its relationship with deteriorating muscle spasms.

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.”

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.”

The relationship between Dysarthria and individual communication aspects of Friedreich’s Ataxia

Dysarthria is a motor speech disorder resulting from neurological injury of the motor component of the motor-speech system and is characterized by poor articulation of phonemes. In other words, it is a condition in which problems effectively occur with the muscles that help produce speech, often making it very difficult to pronounce words. It is unrelated to problems with understanding language (that is aphasia), although a person can have both. Any of the speech subsystems (respiration, phonation, resonance, prosody, and articulation) can be affected, leading to impairments in intelligibility, audibility, naturalness, and efficiency of vocal communication.

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”.

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.