by Andros Constantinou

I’m a retired high school maths teacher of 35 years. I’ve been married to my wife, Mei, for almost 38 years, and we have two adult children, Alexander and Mayling (Alexander and his partner are expecting their first child – our first grandchild, in October).

In November 2019, I alerted my GP to a problem I was having with my left leg. After various tests I was diagnosed with Primary Progressive Multiple Sclerosis – MS.

The diagnosis was actually a relief for me, because I now knew what was affecting my walking and tingling in my fingers. Even though I was officially diagnosed in 2019, I reckon I had the first stages of MS for a few years prior. It just hadn’t particularly bothered me, and I had the idea it would eventually go away.

It didn’t.

Multiple Sclerosis is a condition that affects the central nervous system. It can affect your walking. You get tingling in your fingers and toes, some people become disabled from it. It’s unpredictable. It can affect your eyesight and your speech. It can make you very tired. It affects people in different ways.

For me, the main effect is my challenging walking style. I can still walk with the aid of a walker (or furniture) but for longer distances I need to use my “special legs” – the ones with wheels. My manual wheelchair is good for exercising, and my foldable electric scooter, the ATTO, is good for when I go shopping. I also have an electric wheelchair which I use when travelling, but my foldable manual wheelchair is a lot lighter, and once I become more confident using it, I will definitely take this on my travels instead. At the moment it’s much easier using the ATTO and my electric wheelchair, especially on those days when I’m tired.

There is no cure for Multiple Sclerosis, even though they are working really hard on finding one. You can treat it using disease modifying drugs, physical therapy and diet. I do physical therapy at Neuro Rehab every Monday, and regularly do the physio exercises at home when I can. Physio really does help with keeping my symptoms in check.

With proper treatment, people with MS can still live long, meaningful and productive lives. 

I loved teaching, but unfortunately I had to retire before my 60^th birthday due to MS. Teaching was one of the few things I did well, but it wasn’t fair on the kids if I could only sit in front of the classroom and teach. In my prime, I enjoyed walking around the classroom and interacting with students.

Primary Progressive MS is the hard one to treat, it’s the one that hits people of an older age. I’ve started my treatment of Ocrevus Infusions every 6 months in the hope it will slow my MS down. At the moment it seems to be working, but it’s a life long treatment.

When I was first diagnosed, I didn’t care too much about myself. Maybe I was in shock. How can someone who kept active with no history of this condition in his family, be brought to his knees with this mongrel condition? I don’t know. Neither do the experts. These were the cards I was dealt, I figured. It could have been much worse.

I was concerned how it would affect the people I was closest to. Thankfully, I have a very understanding partner, a very caring partner. It’s so important to have good people to support you if you have a disability.

I now say to myself, and to everyone I know and meet, that yes, I do have MS, but MS does not define me. No disability you have should define you. You can still do all the things you like doing, but in a different way. Before my MS diagnosis, I was very physically active, enjoying playing soccer, squash and regularly jogging. MS killed all of that, but I adapted to enjoying other activities.

Some of the things I now enjoy doing are:

Travelling

I was born in Cyprus in 1961 and migrated to Australia in 1964. In 2022, after 58 years, my wife and I decided to travel to Cyprus. I brought my electric wheelchair during this time. Cyprus was reasonably accessible and we had a wonderful time. We also spent one week in Dubai.

In 2023, my wife and I went to Malaysia (my wife is from Malaysia and has five sisters there). This was the first time I travelled to Malaysia in almost 15 years. We were married in Malaysia and we used to regularly visit. But due to my MS, I need to be careful when visiting countries with extreme heat. I decided to purchase a cooling vest and a personal cooling neck fan in order to adapt to the heat and humidity. We had a great time. Malaysia will always be close to my heart.

We also visited Taiwan during this time on an accessible tour. Accessible tours are the best for people who have a disability and still want to enjoy their time when travelling.

In December of 2023, my wife and I enjoyed a cruise to New Zealand on board the Grand Princess. If you use a wheelchair, not to worry, cruising is one of the best all inclusive things you can do. We are now in the process of planning our next trip. Probably to Alaska.

Don’t let having a disability ever stop you from enjoying your travel!

“Walking” with the Westfield Walkers

Most Thursday mornings, I go for a push with a group of socially active over 55’s who call themselves The Westfield Walkers. We meet up in the shopping mall because it’s a safe, weather proof environment to exercise. People can walk in groups, or on their own at their own pace. After a couple of laps, we usually sit together and have a yarn over coffee. Able or disabled, anyone is welcome to join.

Volunteering at the Golf at the Growling Frog

Most Tuesday mornings, I often help my brother who runs the golf program for over 55’s at the Growling Frog golf course in Donnybrook. To be honest, it’s really an excuse for me to get out and socialise and get a free lunch!

Tutoring Maths

I often tutor young people in maths. I believe as we grow older it’s important to do something which exercises your brain, and tutoring maths for me not only benefits young lives, it also helps me in the cognitive sense.

Breakfast club and restaurant outings

Most Saturday mornings my wife and I join my brother and his partner with some close friends for our “breakfast club”. Apart from obviously having a scrumptious breakfast, we socialise and discuss the events of the week.

My wife and I regularly go to restaurants, and I’m now much more confident in going out to restaurants with my wheelchair. Some restaurants can be quite small with limited space for a wheelchair user, but I found that most establishments will try to accommodate you as best as they can. Also contrary to what I thought before becoming a wheelchair user, most people will assist you just to make your life a little easier.

Building my wheelchair skills

Since I’m only new to using a manual wheelchair, I thought I better get some training on how to use it properly. I’ve now participated in two wheelchair sessions at AQA.

During my first session I learnt how to properly push a wheelchair forward, backward, turn 180 and 360 degrees, and how to carry a drink while moving in a wheelchair. My second session involved how to perform a wheelie. I found this very difficult to accomplish, and will require further training. I also want to learn the best technique for pushing up a slope. The staff who train you at AQA know their stuff quite well and some are wheelchair users themselves. They are very patient and encouraging. I cannot fault them at all.

Invisible to visible

For most people with MS, this is an “invisible” condition. If you have MS, especially in the early stages, it isn’t apparent to others you are disabled. I remember when my walking began to deteriorate, most people who saw me walk thought I was drunk or under the influence of some sort of substance. Short of wearing a t-shirt with the words I’m not drunk, I just have MS, I decided to start using a cane, then a walker and now a wheelchair to maintain my independence and to become visible to others that I do have a condition that prevents me from walking properly.

I have also joined MS Australia to keep up to date with developments in MS research. I personally think that a cure for MS is close, but it may not happen in my lifetime.

But I strongly believe that they will make MS “boring”, meaning they can slow it down and manage it to the point where it does become invisible.