My wife’s journey with MS by Ken Levien

My wife Sue and I were married in 1977 and in 1979 she gave birth to a healthy daughter, Debbie, and in 1984 a healthy boy, Darren. In 2003, when my wife Sue was 49 and I was 54, she got out of bed one morning and fell to the floor.

We thought that was odd, but it wasn’t until she started experiencing regular issues with her balance that we became concerned and decided to visit our GP, who referred us to a neurologist. After many tests, including an MRI, Sue was diagnosed with MS in 2004.

It was a shock because we knew nothing about MS at the time.

In 2005, Sue flew Melbourne to consult with a renowned physician who specialised in MS. She continued to have bouts of poor balance, poor speech, weak arms and hands.

We had to make a lot of changes managing Sue in the car and to the house. At one point she went to rehab for nine months trying to get her to walk again finally they helped her to walk with a walking stick. Suddenly Sue experienced another decline and needed to use a walker. She used that for five years and then eventually progressed to a wheelchair, which she has used for the past two years.

Sue still struggles with her balance, she can’t move her right arm and hand and also struggles to move her right leg. She needs two carers now 24 /7. We have also had to adapt the whole house in the last past years this including swapping to a hospital-style bed and electronic hoist installed above the bed, we also had to change the whole entrance to the house, including a ramp from the front door to the street.

Sue currently sees a physio four days a week for an hour, which helps to keep her symptoms steady and keep her moving.

Despite the challenges Sue has face with MS, she has always maintained a positive outlook and found lots of ways to continue enjoying her life and our life together.

Sue has now turned 70 and to celebrate this amazing milestone I wanted to make a special overseas trip for her to her favourite places in the world, Austria and Germany. It took me six months of planning. We needed to take her two carers and to accommodate her additional needs, including wheelchair access and dietary needs. I needed to do a bit of extra searching to find the right kind of accommodation but in the end the trip was a success and we both had a wonderful time. We returned in May this year and Sue absolutely loved it.

My advice for anyone navigating a new diagnosis, including family and friends, is that you can still live the life you want, even if adjustments need to be made and it may look a little different than you imagined.

It is a big adjustment initially, but in mine and Sue’s experience it’s about finding ways to stay strong and support your mental health, engaging in activities you enjoy, and accessing the right help.

Someone can have MS, but they can still have a good life if they are getting the right help from people around them. If it wasn’t for the NDIS we wouldn’t have been able to have Sue living at home, with the support of her funded carers. Sue’s attitude has made a big difference through it all, and she has maintained a really positive attitude, which I feel that has made a huge difference.

As a carer of someone with MS, I also know how important it is to look after yourself and maintain your own passions and hobbies. I still play tennis and bridge three times a week and have managed to take a few holidays alone to recharge.

Remember. don’t let it get you down or give up, there is help out there if you need it.