Living with Multiple System Atrophy
Multiple System Atrophy is a neurological degenerative disorder. As cells degenerate in specific areas of the brain, it starts affecting a patient’s balance, movement, bladder movement, and control of other muscular functions. The causes of MSA is unknown, and there is no known cure as of today.
MSA is a pretty rare disease, with a prevalence of 4.6 cases per 100,000 people.
Unfortunately, my mother was one of the 4.6.
Diagnosing the disease is a challenge, because there are no tests that can definitively confirm it. In the early stages, all we knew was that my mother’s brain seemed to have started shrinking. She’d suffered a few falls, and we thought it was a stroke that started meddling with her sense of balance.
It was only around 2006 that we had a more conclusive diagnosis.
At first, it was more about taking precautions when walking, and trying to reduce the amount of potentially hazardous activity such as walking tight flights of steps, and placing non-slip mats in the bath. However, it got progressively worse.
By the end of 2008, she was on a wheelchair, with assisted movements to and from the bathroom / bedroom. Her throat muscles were also affected such that she had difficulty pronouncing words, and some difficulty swallowing food. Towards 2011, she’d lost her voice, and all communication had to be done via her pointing out individual alphabets to spell out words on an alphabet chart. Even that fell apart toward her last year of struggle with MSA, as her arm muscles lost all control and strength.
She could no longer feed herself, and could only take in a soft diet. On days she was tired, she couldn’t even summon the strength to open her eyelids.
All this time though, she was extremely lucid, and her mind was still very active, remembering her dear little sister’s birthday, and making sure we were well attended to each time we visited.
MSA took away her life little by little. But she was adamant in never giving up, and never stopped fighting. She never made it easy for MSA.
She succumbed to MSA 30th October 2012. Taken, but not forgotten.
I love you Mum. I know you’re at a better place now.