10 things I know about…living with multiple sclerosis

Living with multiple sclerosis doesn't have to mean the end of the world. Paralympian gold medal cyclist Carol Cooke shares what she's learned.

Today I’m excited to introduce our very special guest, Carol Cooke. Carol is a Paralympian gold medallist, a world cycling champion, 2013 Victorial Cyclist of the Year, and an Order of Australia recipient. Oh, and she also has multiple sclerosis (MS). Here, Carol shares what she knows about living with MS.

Living with multiple sclerosis definitely doesn't have to mean the end of the world. Paralympian gold medal cyclist Carol Cooke shares what she's learned.


1. The initial diagnosis is very, very scary.

When I was diagnosed with MS at the age of 36, the neurologist told me to ‘Your life as you know it is over so go home and put your affairs in order before you become incapacitated.’  I didn’t know what to say and just sat there stunned.  He then told me I would never do sport again, I would have to stop work, go on a whole bunch of drugs and then told me he didn’t have time for me as a patient.  He had enough people with MS on the books already.  He told me to go back to my GP so he could look after me and never gave me any information about what MS was.  I had only been in Australia for 3 years, my husband is 10 years older than me and we had just bought a house.  I was so scared that I would lose all of that and have to go home to my family in Canada so that they could look after me.

2. It is important to know the facts, knowledge is power.

The most important thing to me was to learn about what MS is.  To know what might possibly occur but also what might not!  I was like a sponge those first couple of years, learning everything I could about MS.  What drugs were out there to slow the progression and to also find support from not only other people with MS but what MS Australia could offer me.

3. You can’t let MS define your life.

If I had actually listened to that first neurologist I’m not sure where I would have been today.  He was right in that my life as I knew it is over but he was talking in a bad way and I look at it in a good way.  MS has made me who I am and given me opportunities I never would have had.  Yes it is a part of my life and always will be, but MS is not who I am.  I am someone ‘Living’ with MS not ‘Suffering’ with MS.  I am a woman with a lot of different parts to her life and MS just happens to be one of them.

Living with multiple sclerosis doesn't have to mean the end of the world. Paralympian gold medal cyclist Carol Cooke shares what she's learned.

4. It is important to live your life in tandem with MS.

There are always a couple ways to accomplish things in your life, no matter who you are.  Over the years if I wanted to continue living my life, my way I have had to incorporate other means of doing things so that I live my life in tandem with my MS.  I always said that I would never use a wheelchair or walking aid but I quickly found out that in order to stay independent I had to work with MS.  So I did use a wheelchair and I now do use a walking stick.  I have also had hand controls put in my car, own an “old ladies” scooter and I ride 3 wheels instead of 2.   All these changes I have made allow me to live in tandem with MS.  I’ll never miss out on any part of life.

5. Having MS is not the end of the world or your life.

At first I thought it was the end of the world.  You tend to go through a grieving process, just like losing a loved one you tend to lose the person you were.  But I have learned that I love the person I am now more than person I was.  I was climbing the corporate ladder, earning more and more money but I realise that I had no substance to who I was.   MS has made me who I am today.  I have learned that MS will not kill me, that most likely I will live as long as anyone else.  But I believe that MS has made me a more compassionate and understanding person.

6. We each have the power to make the decision how to live our life with MS.

After coming to terms with my diagnosis I made the decision that no one was going to tell me how to live my life.  That first neurologist told me I would have to quit work and would never do sport again.  Well I defied those comments, continued to work, getting promoted a number of times in the process and continued doing sport, even taking up two new ones in the process.  It was all about baby steps, to not push myself to breaking point and let my body get used to new ways of doing things.  I do have the power to decide what is right for me.

7. No one knows your body like you do, it’s important to know what is best for yourself.

I realised quite early after my diagnosis that no doctor how compassionate can understand what my body goes through on a daily basis.  I even told my new neurologist that he may have all these letters after his name and a heap of education but at night he went home and got to forget about MS.  I told him that I knew more than him about MS because I lived with it every day.  After discussing this with him he actually realised that I did know what was best for me and we were able to work together over the years to get me to where I am now.

Living with multiple sclerosis doesn't have to mean the end of the world. Paralympian gold medallist Carol Cooke shares what she's learned.

8. Having a chronic illness shouldn’t stop you from doing things, you just have to do them differently.

Whether you have MS, arthritis, diabetes or any other chronic illness you should never stop it from letting you do what you want to do.  Just do it smartly and differently if you have to.  If I wanted to cycle I just had to find how to do it on something other than a bicycle, so I found a tricycle.  If I wanted to row in a single scull I had to learn how to find points on the river that I could line up my boat with in order that I not have to look around so often so that I didn’t lose my balance and fall in.  I have learned that there are always ways around things you just have to look outside the square.

9. Life is about the journey and not the destination, so enjoy each day of that journey as if it’s your last.

I like to think of life as a terminal illness because if you do you will live each day with the passion that it ought to be lived.  If you have made a mistake yesterday don’t dwell on it, you can’t change the past.  We have no idea what will happen tomorrow so don’t worry about that either.  The only day we have is right now so make sure you live it to the fullest.  When my crew didn’t make the Beijing Paralympics I wrote in my blog to my family and friends, that I was sorry we hadn’t accomplished our goal that we had set and they had supported.  My sister gave me a kick up the butt through cyber space and told me that I had taken her on an amazing journey through my stories on my blog and that she wasn’t worried about the destination.  That made me realise that the journey was the most import thing in life, after all when we are gone our journey is complete and that destination I can wait for!

10. Dare to face your fears and believe in yourself and you can accomplish anything.

There are many times throughout my life that I have been put down.  As a 9 year old being told I was too fat to be an elite gymnast or as an adult rowing, that I would never be fit enough or good enough to make a national team.  But I believed in my ability and my tenacity to accomplish my goals even if no one else would.  I always say to audiences I am speaking to whether they be children or adults “What would you attempt to do if you knew that you couldn’t fail?”  Ask yourself that question and then go out and try something new.  You will never know if you like doing something without first trying.  If you are good at it, great, if you aren’t then who cares…if you enjoy it and believe in yourself, then keep doing it.  As I finish up just remember one thing “DREAM BIG”!



Carol is an ambassador for the MS Melbourne Cycle, which will take place on Sunday 19 April to raise funds for people living with multiple sclerosis (MS), the most common neurological condition in young adults. Her first book ‘Cycle of Life’ will be released on 23 April.

Written By

Carolyn is the editorial director of Champagne Cartel and a freelance writer. In her spare time she is a long-distance runner, peanut butter enthusiast, and single mum to three incredible humans.


  • Holy Wowsers. How very inspirational you are. As someone who has lived with the spectre of MS in my family since my mother’s diagnosis when I was 13 so much of this brought a lump to my throat.
    My mum also refuses to be defined by her illness, and although it may march along in her body, it does not march in her heart.
    Thanks for sharing your story.

  • An awe inspiring story – thank you Carol for sharing your challenges and achievements.

    PS-I bet you would make an excellent Dragon boat paddler. They have teams of 20 paddlers with a drummer and sweep (steerer at the rear). They celebrate diversity and ability. I saw a large lady with a below knee amputation paddling recently. It’s not an Olympic sport yet but Masters games are good for bling.
    One of our paddlers is blind, another has mild intellectual challenges and I have hearing impairment (can’t wear my aid while paddling) so they keep me in the count.

Leave a Reply