Sunday, October 21, 2012


These words from the song ‘Maybe this time’, sang by Liza Minnelli in ‘Cabaret’, made me think of the recent Paralympic Games in London and the many heroes of this glorious event.  All of them competed despite great physical challenges.  Some of them, like Oscar Pistorius, won medals and became world famous, and loved by millions.   

If you’ve been an internet user for a while, you would no doubt have seen video clips of the brave Nic Vujicic, who happily and joyously lives his life without limbs, and inspires others with his talks and books.  He has most certainly earned his place in many hearts all over the world.  

Here in South Africa we also have a much admired Afrikaans speaking radio presenter on radio RSG, Martelize Brink, who, after a viral disease in her teens, lost the use of her legs.  She also acts as inspirational speaker and travels the world despite her physical challenges.  This special lady daily takes her place in our households and our hearts.

I too admire all these challenged athletes and people and spent hours and days watching these winners perform at the Paralympics.  

It would however be unfair to compare Multiple System Atrophy (MSA) patients with these people and have similar expectations of them.  To compete in the different classes at the Paralympic Games, these athletes all had to be assessed, and therefore their conditions had to be stable.  They have had time to adapt to their disabilities, some of them a lifetime, and although it’s challenging, they can progress from there.  MSA is a degenerative disease that continually causes changes in one’s condition as it progresses.  

Another big difference is that these people are all, besides their disabilities, clinically healthy.  MSA is a complicated disease which not only disables the patients, but also leaves them ill.  Patients often need to be hospitalized with bladder and kidney infections, constipation, breathing problems and respiratory infections etc.  For this reason there is no class for athletes with degenerative diseases, like Parkinson’s or MSA, to compete in the Paralympics.

MSA patients daily have to face the devastation caused by the disease.  We continually have to adjust to the loss of ever more of our abilities, like bladder and bowel control, severe problems with swallowing and complete loss of speech, backache, neuralgic pain caused by peripheral neuropathy, and fainting episodes caused by severe drops in blood pressure.

Dear friends I hope you understand that the nature of the beast we are fighting doesn’t always allow us to live up to your expectations, however much we’d like to.

We are facing a fight we cannot win.  There are no medals. 

The MSA community all over the world are filled with supportive people who strive towards a common goal. We stand united in this fight; to create awareness and understanding for the disease and to raise funds for research. 

“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain”. C.S. Lewis

The only real failure is the failure not to try and the measure of success is how we cope with disappointment.  We get up in the morning, we do our best, nothing else matters. From ‘Best Exotic Marigold Hotel’

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