Me and my soca scooter

Stacey Samuel-O'Brien

Multiple sclerosis can affect each person differently.

One person may have muscle and mobility challenges, another may suffer from cognitive decline (possible impaired memory or concentration), and yet someone else may have difficulty with speech and swallowing.

This is because MS causes nerve damage, which results in lesions on a patient’s brain and/or spine. The range of symptoms is vast and varied.

I have lesions on my brain and spine; however, my symptoms are mainly physical and my left side is more affected. My worst symptom is spasticity, a condition that causes my muscles to remain contracted and resist being stretched. As a result, my left arm/hand tend to remain bent/curled into a fist; my left leg gets stiff; and my left foot drags when I walk.

My walking ability has been on a steady decline since 2008. One day, in 2010, I was in my doctor’s office and a nurse behind me asked, “Miss Stacey, where’s your cane?”

I told her that I didn’t own one. Back then, the spasticity was not significant and the only impact on my walking was an extremely off-kilter gait. I probably looked like I would topple over at any moment, but I’d grown so used to it that I’d just slowed my walking in the hopes of preventing any falls. She urged me to buy one because it would help.

I was sceptical, but that night I took her advice and bought one online.

She was right. It helped my balance and, as a result, I walked more steadily and quickly.

That said, I had to get used to using it. Once, someone offered to help me carry my stuff – and the only item I handed over was the cane. Not to mention the number of times I walked away…leaving it behind.

Soon, my love affair with canes started and I began having fun. I don’t use them any more, but I still have my starter canes, a denim cane with my initials, and a uniquely crafted bamboo cane that remains my favourite. I even own one with a hidden compartment that holds a flask and two shot glasses. Each cane was different and an entertaining talking piece.

I didn’t feel self-conscious about using canes until a few months later, when I went to a Miami carnival fete. It occurred to me then that I’d never noticed any disabled patrons in a fete before.

As the night went on, though, I realised that nobody was giving me a second look, and I got over it.

My attitude now, is “It is what it is. Go brave! Make it happen.”

In those days, as long as I had my cane, I didn’t need anything else, so I didn’t buy my first mobility scooter until a few years later, in 2013.

A mobility scooter is an electrically-powered scooter designed for people who have trouble walking or getting around. The first time that I became aware of them was Christmas 2012, in Vegas. They are available for rent from most of the hotels, so I rented one, because walking was going to be an integral part of the trip.

After renting another in Atlanta for an MS Walk, I decided to buy one.

Besides, I also realised that walking, especially when I was out, was taking its toll. As the spasticity worsened, my leg would tire, start stiffening up, and the left foot would begin to drag. That put me at risk of falling, which would have been dangerous and embarrassing.

I embraced using a scooter because I refused to let this disease stop me. And once again, I began having fun.

My first scooter was coined “Soca Scooter” by one of my friends in an Atlanta carnival fete in 2014, and all subsequent scooters have had names and/or personalised licence plates.

Having fun with my walking aids helps me deal with everything this disease throws my way.

I also had to learn to handle the thing. At first, I always “drove” at the maximum speed (four or five mph) and I pulled down displays in stores, drove over people's feet (friends and strangers) and ran into humans, walls and doors. Luckily, those days are (mostly) behind me now.

I love my scooter. It’s one thing in my life that I cannot do without – just that thought makes me shudder. I’m more independent because of it and I don’t need anyone else to be with me when I go out, “just in case.”

It’s not to be driven on the road, so I still need to get where I’m going, but it conveniently breaks down into three parts and comfortably fits in most car trunks.

My scooter has made living, and liming, with my wretched disease much easier and more fun. Besides…Everybody loves it.

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.