Obviously, I have a battle with MS, but I'm determined to stay on my feet. I'm determined to remain at home. I've lived here for 30 years and with the scooter, I can get in anywhere.
4 minutes [away] there's a major shopping centre. I get to the doctors, everybody that I need to go and see. When I was younger, I played softball, then also coached up until I was about 42.
Around the time I was diagnosed in 2002. I was coaching my old club. They were going to compete at the Melbourne Masters and I had difficultly catching the ball and hitting it to them. And that was the beginning of something's not right. And like anyone, it's like disbelief by me also trying to get as much information and get your head around it. Having to tell family and and people around you.
I went to my neurologist. She thought I'd be an ideal candidate for this new trial for this drug and I commenced that in 2014. I saw it as an opportunity. If it could keep me upright a little longer, that's good. But if it could help other people, well, that's even better. I'm going through the Wesley Research Centre and the staff there have been absolutely wonderful, very cheerful.
We do have quite a few laughs.
So a lot of people who are volunteers. So from my arrival to the hospital, there's always a couple of 'volies' that will wheel me up there to the eighth floor. It's also the admin and the nurses and the RNs and the doctors that are in the research who are all very, very positive. Every week, I would go and have cannulisation. The drug would be administered on a very controlled process.
Every month, they would take a lot of blood from me. Every 3 months, I would have a full test. They do ECGs every week. They check on my heart, blood pressure, all my vitals etc. So that gave me a good idea that I would everything else was working okay. Yeah, it was nice to know that I was still on my perch.
With the clinical trial, I have been their number one priority and they have basically made sure that I've been comfortable and looked after me very, very well. For anybody, you will feel a little bit apprehensive about ‘Will it help me or won't it?’ But I've gone into this with a positive attitude. You know, rest assured that you know, if I wasn't happy or didn't feel like this is working, I could stop and go back to what I had.
The advancements in the drugs over my time, my journey has accelerated and if I can be that tiny piece that might help find a cure and find a reason for MS, I'm quite excited about that. I enjoy being part of life. I have remained very connected with my friends and I find connecting with other people is very important. Everybody is here for a short time and I am making sure I'm having a good time.
On 15 March, 2002, I was diagnosed with MS and my world changed immediately.
From being an active physical person all my life, I was on a journey to being physically challenged in the use of my right leg and right hand. My neurologist has treated me with the latest of drugs to delay my progression and in November 2014 told me about a trial for a new drug. She explained the drug was developed in New Zealand and targets a different set of immune cells, called myeloid cells, than other drugs currently in clinical trials. I may be a suitable candidate.
After reading everything about the trial and talking to my family, I decided to participate. This was an opportunity for me to help slow down my progression of MS and improve my lifestyle. Most importantly, if it helped me, it will help many others in the future, in the world’s journey to find a reason and a cure for MS.
After undergoing many clinical trial specific assessments to ascertain if I was eligible, including MRIs, blood sampling and physical and cognitive testing, I commenced the trial in early February 2015. I also was the first candidate for the WSARI team and they have a very strict protocol to follow. This journey was going to take over 12 months, with weekly infusions of the drug and vitals checked, monthly blood collections and ECGs, and 3-monthly full testing again to measure any changes in my status.
I have noticed small changes so far, being able to move my foot a little more is a giant leap in my journey to stay upright, walk without aids, reduce falls, be more independent and live at home.
I am grateful for all the help I have had on my MS journey over the last 13 years, from family, friends, doctors, nurses, physiotherapists, OTs, podiatrists, pharmacists and assistance from all levels of government.
If your specialist recommends for you to be part of a clinical trial, grab the opportunity, as firstly it may help you, it will not cost you anything, except time, and you will be participating in research for a cure and prevention of your disease, right now or in the future.