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My MS Journey

One thing about me that mannnyyy don't know.
Is.. Deep breath.. I'm in the early stages of MS. I've been so blessed to have faught for 10 years on and off against cancers that threatened my miriacle life.
Though I've kept very quiet about the findings of MS discovered about a year...

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I had my first attack when I was nine years old. The first thing I remember was finding it difficult to do up buttons. This was followed by weakness in my left arm and then problems with slurring words and my mouth dropping on the left side and problems closing my left eye. Then trouble walking...

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NDIS logo

My first National Disability Insurance Scheme (NDIS) “package” was approved recently. For those who like the punch line up front, so far the experience of becoming an NDIS participant has been a good one for me.  I’m right at the beginning of using this new system, but since I agonized for many...

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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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When I was initially diagnosed with MS, I read a lot of stories online that suggested my life would now virtually be over. My neurologist had told me “whatever you do, don’t go home and sift through Google results about MS”. Although I understood that this was certainly great advice...

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Lines in the sand

Some lines in the sand are like solid stone walls that will never shift.  Others are more like children’s sand-drawings that will wash gently away with the next incoming tide. Some of mine have started out immovable, only to erode and change over time.

I drew a line that I once thought...

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Firstly, I can hardly believe it’s been a year since my last blog. At the risk of making excuses for my lack of posts, it has been a busy year with full-time studies and work, along with selling and moving house, and the rest that life throws at us all! It’s been a good year...

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how

Have you ever met someone and thought, I don’t know how they do it? Their story of what they have achieved with their life, or what they manage to fit within their day astounds you. How do they manage to get all that done and still remain so positive and focused? Or possibly its been...

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We're back

It is around 18 months since I wrote a short blog post and was selected to be one of the “Uninterrupted” blogging team for MS Australia for the next year. Twenty five posts later (...

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Tennis

Most of us have read about “the note” – and a lot of us who live with MS are all too familiar with the...

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Imagine if people with MS communicated all their frustrations in haikus…

Fatigue
House needs a tidy.
Not gonna happen. Craving
downtime. Urgently.

Unpredictability
Yesterday all good
Today I am...

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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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Sky writing

"POSITIVITY DOESN’T CURE CANCER!"

I stumbled across this link on social media last week, accompanied by the short headline (above) that seemed at first glance to say “see – I told you so! Being positive doesn’t impact...

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acronyms

As responsible parents in the 21st century, we never swear in front of our kids. (Ok I just lied. We try as hard as possible to minimise their exposure.) Thankfully, while they do happily parrot back some sayings that make me cringe, we appear to have succeeded in keeping them sheltered from...

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The impact of MS on an individual’s financial future can be catastrophic. There’s a very strong association between MS and loss of employment – and life often includes additional expenses, particularly for those who may find it hardest to continue to work. Just imagine trying to modify your home...

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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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Bruegel's Icarus

There’s an often remarked truth that “life goes on”. Typically uttered by way of an inept attempt to cheer you up when things are not going well, it’s a truth that I think bears closer inspection.  It has been beautifully explored by WH Auden, in his poem “Musee des Beax Arts”.  I read this...

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Ignas Semmelweis

I remember seeing a primary school classmate cry when she got her first pair of much needed glasses.  I didn’t understand why she was so upset - I’d worn glasses for years and knew they weren’t that big a deal. She turned to me, tears streaming down her face, and sobbed “The trees have...

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Kindness card

I love Christmas.  For me it is a wonderful season of remembering a first century teenage girl who was unmarried and pregnant, and the young man who stuck by her as she gave birth in a stranger’s stable. We try to reduce the stress that can be associated with Christmas in my family by keeping...

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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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