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My name is Stacey Samuel-O’Brien and I have multiple sclerosis (MS).
I grew up in Trincity and at 19, I moved to Atlanta, Georgia, where I’ve lived ever since. Living in the US has its benefits, and I’m extremely grateful for everything that I’ve accomplished here, but I am “Trini to the bone” and my navel string will always be tied to Trinidad.
This series is about how I navigate life between Trinidad and the US with MS.
In 2005, I was diagnosed with what I call “my wretched disease.” It started simply enough. I woke up one morning in January and my eyebrow was twitching.
That did not concern me but, two weeks later, it had travelled down and I could feel the entire left side of my face twitching/writhing/vibrating. The sensation persisted 24/7 and I felt as if I was constantly sneering, because the twitching felt it was pulling up the left side of my lip. Interestingly, it was all happening under the surface of my skin, because I looked normal to anyone who saw me.
Finally, I gave in and went to my primary care physician in Atlanta, who referred me to a neurologist. The neurologist prescribed muscle relaxants to relieve the twitching and ordered an MRI.
After viewing my MRI, he told me that I’d either had multiple strokes or had multiple sclerosis; he’d need to run more tests to be completely sure.
“Funny” story about this is that there were times before when I’d feel a tingling in my arm and joke with my sister that I was having a stroke, and now here was this doctor saying that actually was quite possible.
The additional tests were a lumbar puncture (spinal tap) and a visual evoked potential test (a measurement of a person’s response to visual stimulation). I endured the tests and waited for the results.
In the meantime, life went back to normal, because the muscle relaxants actually worked.
On May 19, I returned to the doctor to discuss the test results. He told me his official diagnosis was multiple sclerosis.
This was a disease about which I knew nothing, except that Richard Pryor had it, was in a wheelchair, and appeared to be dying. I was extremely bewildered.
Back in those days, I had relapsing-remitting MS (RRMS). In other words, symptoms appeared, stuck around for a few months, then completely disappeared and I’d go back to normal.
In fact, after the twitching eyebrow in 2005, the next MS “incident” didn’t occur until 2007. Between April and November that year, every day for about ten seconds at a time, multiple times a day, I’d experience double vision that was accompanied by stilted walking. It was all very odd and after finding nothing wrong with me, my neurologist concluded that it was the MS “doing its thing.”
Then, one day, it stopped just as suddenly as it started!
My RRMS has since morphed into secondary progressive MS, which basically means that, instead of symptoms appearing and disappearing, I now experience consistent changes and decline in my nerves and motor skills.
I went from walking normally to using a cane (in 2008) to using a walker (in 2014). These days, it is in my best interest to use a mobility scooter when I’m out and about, because my legs get easily and quickly fatigued, so walking far and/or for any length of time is difficult. I am also at a high risk of falling because of a tendency to easily lose my balance – I am disabled.
Over the next few months, you will read about how I navigate an “able-bodied” world; how my challenges and experiences differ between TT and the US; and how I have been able to participate in and enjoy Carnival over the years, despite my diagnosis and disability.
While my wretched disease has slowed me down, I refuse to let it stop me from living!
I want to share my journey and help others understand the unique challenges – and triumphs – of a physically disabled person visiting home.
Remember, these are my stories, my experiences, and my observations. My story should not be used as a substitute for professional medical advice, diagnosis or treatment. Always consult a medical professional for your particular needs and to discuss your individual circumstances.

Multiple sclerosis (MS) is a debilitating autoimmune disease that affects the central nervous system.

In MS, the body's white blood cells attack the protective covering of nerve fibres. When nerve fibres become exposed, electrical messages between different parts of the body and the brain are no longer transmitted effectively. MS can lead to sensory, cognitive, digestive and muscular issues.

It is a degenerative disease for which there is no cure.
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