Hi all , as some of you already know that I have the terminal disease called MSA. ( Multiple System Atrophy) it is a rare disease and no one has really heard of it. I was at my doctor the other week and he told me I was the only one in the area with it.


At the medical centre where he he works there are about a dozen doctors and during a doctors meeting he discussed me and none of the doctors had ever heard of MSA.
I find this the same with every health official I talk to and members of the public are unaware of it.


In the USA and UK March is MSA month, we have nothing here in Australia.


Australian celebrity Rhonda Burchmore , the dancer recently appeared on Celebrity Get me out of here Tv series. Rhonda Chose a charity to represent MSA research. Rhondas sister was taken by this hideous disease.


Basically, MSA is like having Parkinsons disease, MS and motor neuron disease all rolled into one, the prognosis is not very good, as it advances death is usually attributed to pneumonia, which is caused by swallowing food or drink into the lungs. Talking and swallowing become difficult or ceases.
Whilst I still have the chance to write and communicate ( I already have typing and computer mouse moving issues, fine precise movements are very difficult) I am trying to make more public awareness to this horrid disease and what better place to start than here, I hope to get donations happening to MSA research.

Rhonda Burchmore's Clip.
Rhonda On Her Chosen Charity - Network Ten


NeuRa is the reseach facility working on MSA in Australia if you have a few $ spare please consider this research facilty

.NeuRA - Neuroscience Research Australia - Home | Facebook
What is multiple system atrophy?

Multiple system atrophy (MSA) is a progressive neurodegenerative disorder characterized by a combination of symptoms that affect both the autonomic nervous system (the part of the nervous system that controls involuntary action such as blood pressure or digestion) and movement. The symptoms reflect the progressive loss of function and death of different types of nerve cells in the brain and spinal cord.
Symptoms of autonomic failure that may be seen in MSA include fainting spells and problems with heart rate, erectile dysfunction, and bladder control. Motor impairments (loss of or limited muscle control or movement, or limited mobility) may include tremor, rigidity, and/or loss of muscle coordination as well as difficulties with speech and gait (the way a person walks). Some of these features are similar to those seen in Parkinson’s disease, and early in the disease course it often may be difficult to distinguish these disorders.
MSA is a rare disease, affecting potentially 15,000 to 50,000 Americans, including men and women and all racial groups. Symptoms tend to appear in a person’s 50s and advance rapidly over the course of 5 to 10 years, with progressive loss of motor function and eventual confinement to bed. People with MSA often develop pneumonia in the later stages of the disease and may suddenly die from cardiac or respiratory issues.
While some of the symptoms of MSA can be treated with medications, currently there are no drugs that are able to slow disease progression and there is no cure.
MSA includes disorders that historically had been referred to as Shy-Drager syndrome, olivopontocerebellar atrophy, and striatonigral degeneration.


What causes MSA?

The cause of MSA is unknown. The vast majority of cases are sporadic, meaning they occur at random. A distinguishing feature of MSA is the accumulation of the protein alpha-synuclein in glia, the cells that support nerve cells in the brain. These deposits of alpha-synuclein particularly occur in oligodendroglia, a type of cell that makes myelin (a coating on nerve cells that lets them conduct electrical signals rapidly). This protein also accumulates in Parkinson’s disease, but in nerve cells. Because they both have a buildup of alpha-synuclein in cells, MSA and Parkinson’s disease are sometimes referred to as synucleinopathies. A possible risk factor for the disease is variations in the synuclein gene SCNA, which provides instructions for the production of alpha-synuclein.

Is MSA worse than Parkinsons?

Both multiple system atrophy (MSA) and Parkinson's disease are degenerative diseases of the nervous system that affect movement and worsen over time. ... People tend to develop MSA in their 50s to 60s, and the disease often progresses faster than it does with Parkinson's


 So Hopefully the word does spread and more awareness comes out of it and one day we find a cure.
thanks, Mario