Please note that this is a personal fundraiser to cover the travel costs of getting me to the Trek. I am also raising funds for MS support services and if you prefer to donate directly to the cause, you can do that here.
About the Trek and MS:
I am participating in the MS Red Centre Adventure and trekking the Larapinta Trail to fight MS!
Just before my 36th birthday, I was diagnosed with Multiple Sclerosis. The news was shocking, but I'm determined to remain in full control of what my body is capable of accomplishing! If you want to read more about my story, scroll down to the bottom...
Multiple sclerosis is the most common disease of the central nervous system and it strikes young people in the prime of their lives.
There is no cure.
It's quite staggering that multiple sclerosis affects more young people than any other neurological condition - the average age of diagnosis is just 30 years old. It can strike anyone at any time and the symptoms vary so widely.
So I’m trekking the Larapinta Trail to help people living with MS to get them the support they need to achieve their goals and live life to the fullest. In the few short weeks since my diagnosis, I have already received peace of mind from my encounters with MS support services and I want these services to continue to be available for myself and others.
Please DONATE now to support my trek and change the lives of Australians living with multiple sclerosis.
Thank you for your support.
------------------------------------------------------------------------How your donations will be used:
Soulful Concepts Travel cost: $4000
Return flights to Alice Springs: $800
------------------------------------------------------------------------More about my personal MS story:
It all started in June 2017 with the arrival of what I could best describe as a portal to another universe in my left field of vision. It was a bright spot with sparkling squiggly blurry bits, shining blue and white that hung around for a couple months. If I'd been a character in a fantasy film, I'd have jumped right through to discover another bizarre version of the life I knew. But, having my feet firmly planted in reality, I visited an ophthalmologist who performed every eye test imaginable to determine that my eyes were fine, and the portal was all in my head, or rather in my brain, and he sent me off for an MRI. While this raised a slight concern for me, it still seemed like a mundane test to rule out anything serious. This kept my mind at ease until I returned to the ophthalmologist for the results. “I don’t mean to alarm you, but I think you have Multiple Sclerosis.” His words rang in my ears for a few seconds before I came back to my calm baseline and said, “Okay, what do I do next?”
The next step was to see a neurologist for further investigation into what the eye doctor suspected. The neuro sent me for a second MRI and, like a true weirdo, I was actually looking forward to spending another 90 minutes meditating on the dubsteppy sounds and sensations of the MRI machine. I insisted on no music during the test so I could thoroughly immerse myself in the journey my mind's eye took. When I came back to the neuro, he called it RIS (Radiologically Isolated Syndrome), meaning that although the MRI shows a lesion (scar) on my brain just like with MS, the criteria for diagnosis requires there to be a new lesion after a period of time has passed since the first episode. He told me not to be concerned, continue living as normal, and come back for an MRI in 6 months. It was quite possible that it was a fluke and nothing more would come of it. So, I did as I was instructed and continued my life as normal. But I couldn’t help the fear floating around my mental landscape that a different kind of future might await me.
Fast forward 6 months and I now knew a lot more about MS and RIS from engaging in many late-night google sessions. I also had considerable stress and noticed more and more niggling ailments that I had brushed off previously. Still, I enjoyed my 3rd MRI experience and then had a lovely visit with the neuro who said, “There have been no changes to your brain, but would you consider treatment just to be sure?” I found that concept ludicrous because why would I put drugs in my system for a condition I didn’t have? He asked me to return again in 6 months. Oh, the relief was palpable. I’d decided that that was the end of my trip down the neurological rabbit hole and I mostly forgot about MS. Besides, both my sister and my dad had been unwell at that time, and concern for my family took over.
August 17th 2018 was the next MRI and neuro date. I must have been scared on a fundamental level, but I had convinced myself that this MRI would again show no changes, all would be fine and the next MRI would be pushed out to 12 months later. Yet again, I looked forward to the transcendental meditation of the MRI experience, during which I had a couple of very profound visions. First, I saw a high-speed passenger train hurtling across a black expanse. Then, I saw a large yard of rich green grass bordered by a tall and freshly painted black brown fence. The golden light of the afternoon sun shined on the grass. It was clear that something ominous was fast approaching, but that the grass was still greener on THIS side. An hour later, sitting in my neuro’s office, my bubble was burst. I discovered that portals to alternate realities do exist, and I had indeed stepped through one 12 months earlier into the reality of MS. This recent MRI showed a new lesion which confirmed my neuro’s initial suspicions, and he diagnosed me with Multiple Sclerosis.
A couple of weeks later, having had my mandatory pre-treatment blood tests and eye checks, I arrived at Epworth hospital to be admitted for monitoring during my first dose of treatment. That’s when it finally hit me. The emotions I’d kept at bay for the past year at the risk of releasing without warrant all came flooding out and I found myself well and truly scared. It has now been a month since I was diagnosed, and two weeks on treatment. I can’t say it’s been easy. The drugs have caused unimaginable fatigue, and my emotional state has been pretty up and down as I navigate this new world and the steps to a healthy future.
One of the best supports I’ve accessed is MS. MS is a not-for-profit charity and it’s only possible thanks to donations. They hooked me up with a group of newly diagnosed people on a weekly conference call with a facilitator and guest speakers, and there are other peer support programs on offer. They have an MS nurse who is available to answer any medical questions and concerns. They have webinars all the time about different aspects of living with Multiple Sclerosis. There are many more incredible resources and supports available through MS and I’m grateful that this service exists. For this reason, I have taken on the challenge of trekking the Larapinta Trail in Northern Territory to raise funds for MS so they can continue providing amazing support services to people living with Multiple Sclerosis. This is a big deal for me because, despite my fears for the future, I’m determined to keep the grass green on my side of the fence. I’m taking control and I get to say what my body can do!
I have a goal of $4800 to get me there and I hope you’ll help me to reach it! You can donate via the link at the top of this page. And if it speaks to you, feel free to share it with your network.