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MS awareness

I recently participated in a study exploring the experiences of people in the Lesbian, Gay, Bi-sexual, Transgender (GLBT) community living with MS. It was really great to be interviewed for this research, because it was the first time I had been asked about my experiences as a gay man living...

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Girl Alone
I am the elephant in the room.
 
Not because you don't love me. Because you love me so much, you don't want it to be real. And maybe if we ignore it, if we don't mention it, if we sweep it under the rug, it doesn't exist....
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Beach

My son was four months old when my first obvious MS symptoms presented themselves to me for the first time. By the time I reached my diagnosis he was eighteen months old. The decision to have more children was not an easy decision though it was a decision that came quickly. Not wanting to play...

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The plaintiff, Sarah, on behalf of herself and those similarly situated, alleges and complains as follows:

  1. Defendant MS has failed to provide a clear definition of itself as a valid entity.  It fails to make available clear biomarkers for diagnostic purposes and persists as a medical...
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Jaqueline du Pres

I never knew anyone with MS growing up. I took part in Readathon in primary school, but I don’t remember ever having a person with MS come and speak with us about what it was we were trying to raise money for.  Perhaps they didn’t have people do this in the ‘70s?  In any case, for me it was just...

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Star wars

It’s occurred to me, on more than one occasion that the majority the general population don’t really know much about MS or the theories about what causes it. And why would they – I certainly didn’t know myelin from your-lin in my pre-MS days. So, in order to remedy this situation, I have put...

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To Chose

They say that, illness, being a parent, and living in a rural/regional setting can all isolate you from the world. I just happen to tick all three of those boxes. There have been times especially in the past five years since my twins arrived, that I have felt the immense pressure of isolation....

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NYE

For our family, we are ending this year in a much more settled state than how we started it. That being said, in the aftermath of Christmas, it feels like we are not so much coasting as stumbling towards the finishline of 2015. Rather than attempting to craft something overly intellectual, I...

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Christmas

Christmas can be a crazy time of year, even for those who don't live with a illness like Multiple Sclerosis. After many attempts to write this blog post, I leave you with this.

MS Christmas Carol

This the season to be joyful,

Fa la la la la, la...

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Thank you

It’s that time of year that many of us send out Christmas epistles, updating friends and family on the events and adventures of the prior 12 months (plus allowing every parent an opportunity to showcase cute photos of our adorable offspring). In this post, I include my own personal twist on this...

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Road to the other side

Today I want to tell you about a recent experience of being totally open about my MS diagnosis in a very public forum.  Perhaps an odd story to relate when I’ve just posted (twice) on my views about...

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Sign post

I’m pretty sure there is a hard drive at a small medical centre in the western suburbs of Brisbane that is nearly full to capacity with my medical history from 2014. You might think this is because I was quite ill, but in actual fact, it was more due to the fact I was Clearly Not Fine...

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Sleep

For someone who goes to sleep each night and wakes up feeling refreshed I can understand how it could seem inconceivable when they hear about someone who is always tired, no not just tired fatigued. Fatigue is one of the most common symptoms in Multiple Sclerosis, and it is also one of the most...

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hiding under the covers

This post has been a work in progress for a number of weeks now, as I wanted to give this topic the respect and honesty that it deserved. It has been challenging, and with that I hope you can leave any preconceived ideas and judgements on the shelf and take this post for what it is intended....

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Occupational Hazards

As a wife, a mother and an employee, I wear many hats. For the most part, I love the multi-faceted nature of my life and very much enjoy my job(s). I work nearly full-time now at the local university, I have a wonderful husband and three charming and challenging children and I’m totally digging...

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Expectations

In my last post, I outlined five take-home messages to doctors that draw to your attention how to (and how not to) treat a patient when there is considerable uncertainty surrounding the diagnosis. In this second instalment of my...

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Dealing with Uncertainty

What I’d like to discuss in this post are a few things I wish all doctors out there were aware of. Not so much along the lines of scientific facts, but more in terms of how it feels to face a nebulous diagnosis like MS, or pre-MS (by this I mean the state generally referred to as being...

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My MS Victory

It's been a loooooooooong week, so I'm cheating and posting the entry I submitted to the #MyMSVictory competition.

My MS Victory is recognising:

  1. HOW to make it through the day...
  2. WHEN to call it a day...
  3. WHAT doesn't matter...
  4. and WHO does!
  5. ...
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Screaming monster face

What’s the thing you’re most scared MS will do to you?

Children ask the most amazing questions!  That one came from a boy of about six who was sitting up the back when I went to the local primary school to tell the children about the MS Readathon.  I had just finished explaining...

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