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SMA Australia

SMA AUSTRALIA

Phone: (03) 9796 5744

exp fillerMy Life With SMA

A short explanation of SMA for those of you whom don’t understand what the condition is.

Spinal Muscular Atrophy or SMA for short is a genetic disorder that affects the degradation of motor neurons in the peripheral nervous system. In other words, SMA makes it harder and harder to use your muscles as time goes on, causing muscles in the body to atrophy and grow weaker in progression with the disorder (as the motor neurons degrade). There are four types of SMA, which help indicate the severity of the condition type one being the most severe and four being the least.

I hope that summary helps, it would be difficult to explain my life with SMA to you if you don’t already have a little prior knowledge on how SMA works.

My name is Jacob Armstrong and I have SMA, and right now I’m sure your thinking. Really a person who has SMA writing about their life with SMA, I didn’t see that one coming, not. Now to be exact I have SMA type three which is rare even for SMA sufferers and less severe than types one and two but far more than type four. Now my general description is that I am twenty-four years old, I’m six-foot-tall (184cm), I have greenish blue eyes, loose-curly sandy brown hair and am mostly Caucasian in complexion. But this short memoir isn’t about how I look it’s about how I have lived and have somehow continued living with SMA, so let me start at the beginning.

I was born on the 29th of January 1994 in the beef capital of Australia, Rockhampton and from the beginning my life hasn’t been what most would call easy. As I was two months premature when my mother gave birth to me and was fortunate to survive, or unfortunate depending on how you look at it. I have always wondered if being born premature played a part in my having SMA or if having SMA was the reason I was born premature to begin with, though these are questions I doubt I’ll ever really find answers too.

The first few years of my life were good ones, I lived life the same as everyone else in a small town on the coast of Queensland called Bowen. Where I visited the beach regularly with family and friends, those days are some of the happiest of my life, the sun, the sand, the clear blue waters and my 3 brothers and I all getting up to mischief. It was a time in my life I miss often, a time when life wasn’t so cruel. But it was short lived, at 8 years old I was diagnosed with SMA type 3 in the city of Townsville and though I didn’t realize it at the time, this disorder would forever affect my life in the worst way possible.

It wasn’t until I was 11 years old that the disorder started having a noticeable effect on my body. The simple things started to become more difficult such as walking upstairs as well as my legs giving way during strenuous activity, like a circuit had just shorted out. The thing is though when your young you just wat to fit in, so for a long time I tried not to notice how my body was being affected and went about just trying to fit in. which for a brief while wasn’t too bad, the first few years of high school I had some good times with a fair number of good friends and a few jobs here and there. But then in the last few years of high school my condition worsened and I could no longer deny that there wasn’t anything really wrong with me, when in actuality there was. My muscles were getting harder to use and I began getting pain around my joints more often.

After high school I started attending university and slowly began to understand SMA and its effect on my body, which helped me to except it even though I was still deeply upset about having SMA. During this time, even though it’s something I don’t often like to admit, I suffered a very deep depression. This was the first year of my degree, I was living away from home and my body was getting harder to use as well as constantly confronting me with various pains. This all took its toll on me and I lost myself for a while and I won’t lie, I was angry about how cruel fate can be. Eventually though I regained myself and took a few years off from university and went home to my parents to better prepare myself for SMAs harsh reality. First, I acknowledged my condition for what it was, a heart-breaking disability that I would have to live with and second, I got my license and a car modified for easy use.

This more or less brings you to today, and today I’m 24 years old and to put it simply my condition is getting worse. It takes me almost a minute to get out of bed now and I’m worried one day I won’t be able to get out of bed at all, and then what? Will I die some miserable death stuck in a hospital bed with around the clock carers? Waiting for my heart or my lungs to give out? I’m a grown man but I’m still very much afraid of my future living with SMA.

By Jacob Armstrong