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Why I volunteer for research trials (and you should too)

I have Multiple Sclerosis. My life would be a great deal better if I didn’t have a progressive chronic disease. But, dare I say, there is one upside.

Before I go any further, let me be clear: by using ‘upside’ I am not trying to be ‘inspirational’, and I am certainly not glamourising life with a chronic disease. But I am trying to make a point.

I have had some unusual – even remarkable – experiences as a result of engaging with my disease and volunteering for medical research trials. I can’t get rid of MS, but I can work with it. These experiences don’t make up for the downsides (and the downsides are many), but they are great experiences. And I wonder why more people in my situation don’t seem to have them.

In the current trial I volunteer for, I‘ve been turned into an avatar. There is now a stick figure replica of me that moves exactly as I move, based on my height, weight, bone structure, gait and balance.

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In order to create this avatar, my measurements were taken and I was covered in stick on sensors by hard-working post-doc researchers. I then strutted around on a raised platform waving at my digital self (she always waved back) while motion sensors and cameras tracked my every movement. And yes, I admit, I pretended I was filming a CGI movie.

As I went through the exercises and tasks the researchers gave me, my strut turned into a stumble and my balance was, shall we say, less than perfect. Balance and coordination difficulties are two of the many varied symptoms of MS. In this case, my stumbling didn’t matter because the researchers were getting the data they need.

As part of this trial, I’ll be going back for two half days every six months for two years.

People ask me why I give up my time for medical research that may never benefit me.

I am doing this because the current treatments for Relapsing Remitting MS (the type of MS I have) are significantly better than the older generation of treatments. I benefit from these new treatments, and they are only available to me because people with MS gave their time and consent in the past.

When I was a child my neighbour had MS. She was in a wheelchair, and my memories of her are vague. She made me uncomfortable, and I used to ignore her or avoid her. Now, as a woman with the same disease in the 21st century, I am thankful I have access to treatments she did not in the 1980s.

She may have been one of the many people with MS who participated in trials and gave their consent over the last decades in Australia.

Remembering my old neighbour and watching the post-doc researchers collect data that may lead to new treatments or better management options made me feel good.

It also made me think: Why was the post-doc researcher so thankful I signed up? She was so apologetic about the time it would take me. She gave me the impression people say no more than they say yes. Don’t other people volunteer?

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Let me clear, I am refereeing to recognised trials in Australia’s leading universities and hospitals. I am not referring to any form of medical research or experimental treatment available at private clinics abroad.

In this case, participating costs me time. But depending on the trial, involvement can mean many things.

I was part of a double-blind placebo-controlled trial for a year, and my neurologist and I will only find out what drug and dose I took when the trial closes in a few years.

In other trials, I’ve given my consent for my medical data (everything from blood tests to MRIs) to be analysed. I’ve signed up to long-term studies, where my answers to questionnaires will be tracked over decades.

My final contribution to medical research will take place when I die: I’m donating my brain to the Victorian Brain Bank.

I am lucky. I live in Melbourne, a city with a vibrant medical research community. I try to participate in every trial a researcher or specialist asks me to. I think you should too.

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Inside an MRI machine

Every time I have an MRI, I fill out the same safety form again.

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The form never changes, no matter how many times I fill it in.

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Warning signs. There are always warning signs. Even if I am feeling fine, the warning signs are always a reminder that I am not, in fact, fine. So my advice? Ignore them.

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Normally at this point I am wearing only a hospital gown (or if I get lucky, scrubs). This time, I got to remain clothed, take my time and really look at what else is in the room with the MRI machine.

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My scans are always of my brain, and this is the head holder they use to keep my head still (although normally I’m lying down).

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Each time you go into an MRI, they make you hold an emergency button (it is attached to the cord in my left hand). I’ve never used it yet… But I have thought about it.

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It gets cold in there… Particularly when you are only wearing a hospital gown. Say yes to the blanket. Always.

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There is a mirror above your eyes to help you see out of the machine.

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Peaking out of the MRI machine.

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The view the radiographers see when I am in the MRI machine

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And my partner Jay checking me out in the MRI machine.

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There is a pressure release hatch (I like to think of it as the escape hatch) in every room with an MRI.

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And finally, a close up of the pressure release hatch in the room with the MRI machine.

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I climbed a mountain (yes, really)

I didn’t blog about MS in 2016 because, well, MS bores me. I’d like to forget about it. Still, as 2017 is now well and truly underway, I have a few updates to add to this online record of mine.

My MS was stable in 2016

Symptoms remain and yes, some days were a write off. But my third year with MS was better than the first two. Win.

But side effects from MS medications were a nightmare

There is a difference between MS symptoms and side effects. And for me, 2016 was the year of side effects. Actually the middle six months of 2016 were a clusterf*#k full of side effects.

One year into treatment, Gilenya (my first MS medication) turned on me. Four months later (after one skin cancer scare, one trip to the emergency with suspected liver damage, complete skin breakdown and an all over body drug rash all chalked up to the drug) my neurologist and I decided to switch.

Switching MS medications is… unpleasant. But in this case, necessary.

I switched to Tecfidera, another oral drug which comes with a host of new side effects. But almost three months in, I am over the worst (or perhaps I am just over the embarrassment of flushing bright red for hours each day).

And in late 2016 I climbed a mountain

I am not a hiker, but my partner Jay loves it. Camelback Mountain in Phoenix Arizona is his favourite hike. So, in December 2016 (Phoenix is a desert: no hiking for me with MS there in spring or summer) Jay helped me reach the top.

It took me more than twice the time he normally takes to do the entire hike just to reach the summit (it ascends 1,280 ft, from 1,424 ft above sea level to 2,704 ft), and then of course I had to get down. But it was worth it.

He also filmed me doing it. He’s the best.

And as for blogging in 2017…

I’m hoping to be well, with nothing to record. So hopefully there will be nothing.