Doing your own research

When I was first diagnosed with MS, even before it was definite, I started looking into it. I wanted to learn more, about how the disease works, what treatments were out there, how people handled it, what the future may look like for me. I think most people do the same thing when they are told something so life-changing. Perhaps it is to remove fear, that fear of the unknown. Perhaps it is to feel some control over an uncontrollable future, to learn what can be controlled to ensure the best possible outcome. Perhaps it is to know what is possible, what can be achieved. Whatever the reason, the first step is usually Google, and when we start looking for answers online we need to ensure what we’re looking at is reliable.

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new ms LIFESTYLE guide

MS Research Australia has just released a lifestyle guide for people with MS that honestly would benefit more than just those of us with the disease. By improving our overall health we decrease the chances of developing various illnesses and diseases that can be avoided or controlled, such as heart disease, type 2 diabetes, and to some extent a range of mental health conditions such as depression and anxiety. The guide is free, and I’ve summarised the key points in this post.

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the effectiveness of MASKS in a pandemic

Whether or not to wear a mask has been a confusing message from health organisations and governments, as well as a politicised issue in some countries. The World Health Organisation and the Centers for Disease Control and Prevention both recommend wearing face masks (disposable or reusable) along with the other recommended preventative measures and social distancing practices, despite earlier in the pandemic recommending the opposite. This isn’t a failure in science, nor a deliberate attempt to mislead us. It is instead a demonstration of the changing nature of the understanding and knowledge of the SARS-COV2 virus. As more is uncovered by researchers, they update their recommendations and practices, and so should we.

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RETURNING to the office during covid19

This week I’ve had to commute into the city a couple of days to prepare our office and laboratory space for the return of staff and students. As I waited for the train at 9:45am, deliberately avoiding the usual pre-covid peak hours, I couldn’t help but feel a little nervous. As the train pulled up and the whoosh of cold air crossed my face I was glad it was winter as the face mask I was wearing was keeping my face warm. I took note of the number of people recommended for my carriage, checked for the area with the least people, found the recommended green stickered spot to sit and began the trip…

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an INVISIBLE disease

When you look at me, you wouldn’t think I have a life-changing disease like multiple sclerosis. When you look at me I imagine you see a smart and capable woman. You see a mother who is also a successful scientist. You see a generous friend who is also an athlete. You see someone who is fulfilled by life and wanting to give back. That’s all me. What you don’t see is someone who has limited feeling in her right arm and tingling and numbness extending all the way down to the toes on her right leg. You don’t see the loss of hearing in her right ear and the constant ringing from the damage to her auditory nerve. You don’t see the fatigue as she continues to achieve as much as she can each day. That’s all me too.

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In the MRI



The sounds are deafening, but more than that, you feel them vibrate every inch of your body. Invisible signals are being sent through you by the coils of incredibly powerful magnets trying to make a picture of your brain and spinal cord, trying to see if your body is fighting against you. You lie motionless on the table, your head is “cushioned” in place with a cage over your face. A tiny mirror is meant to comfort you as it shows you the room beyond your feet.

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what CAUSES ms

In the lead up to World MS Day on the 30th of May, I thought I would go through one of the first and most common questions I am asked when I tell someone I have multiple sclerosis; “What causes MS?” or “How did you get MS?” I think this question comes from two places; first, people don’t know much about multiple sclerosis so want to learn more. Second, I think people want to know if it could happen to them. When I was first diagnosed those why my questions, what caused it, why did I get it? It’s a fair question, but it’s a hard question to answer.

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what a BAD day looks like

For those of you who have been following my story you may see that I focus on the positives. I try to approach my condition with what I call mindful acceptance. I have this condition, I can’t cure it, so I accept it for what it is, allow myself to experience my symptoms, acknowledge they are there, and work my hardest to improve myself as I always have. My MS is comparatively mild to what others experience, and no two people are the same. This is my experience, and like everyone I have my bad days and I wanted to share with you what that looks like.

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WORKING from home during covid-19

My research group was proactive in their approach to the evolving Covid-19 pandemic. As of the 16th of March, we decided to stop all fieldwork and move into working from home for all staff and students, which was quickly followed by our University following suit. We have coordinated with the students to adjust their projects as necessary, essentially shutting down our lab and moving online to protect everyone as the pandemic worsens in Australia. Whilst I am seeing that many people are unsure how to handle such a situation, I am really enjoying being able to work from home. This looks like it will be the norm for the next 6 to 12 months and whilst I am unsure that David and I will stay employed in this time, creating a new and what feels to be a more wholesome routine for our lives is a very welcome change. If you’ve moved to working from home, are practising social distancing, or are in isolation, there are a few things I think are really important to do.

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finding the POSITIVES in a pandemic

Over the past few weeks, even months, I have seen a lot of negative energy on the rise and understandably so. We are facing a life-changing pandemic. In Australia people are panicking and that is partly due to the effect of the virus, partly to the insecurity of jobs and the ability to provide for yourself and your loved ones, partly due to the overall uncertainty of what our future entails – though it is becoming abundantly clear a global recession is on the cards, and partly it is due to our government appearing slow to act and inconsistent in the messages they are sending, if they are sending any at all. These times are worrisome. For someone with MS the thought of getting Covid-19 and there not being a hospital bed available for me is a little terrifying. But, there are a lot of good things to take advantage of at this time and actions you can take to make your experience the best it can be during times of such uncertainty.

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