G’day, my name is Ben Oakley and this is my story…
I am 22 years of age and I suffer from a One in a Million Neurological Disease called Stiff Persons Syndrome (SPS).
As you can see, this disease has truly tested me and my family, and in the process, it has in a way taken my identity. I am no longer the extremely fit and outdoorsy person that use to just jump on his bike and go for a ride, climb a mountain, jump in the surf and just enjoy the wonders of the outdoors. I was one of those ones who loved a challenge and a good adrenaline rush! I can honestly say that SPS has certainly given me both, but not in a way I could have ever imagined!
This disease has come extremely close to taking my life on countless occasions. To have endured over six hundred life-threatening spasms and to be still alive, without being effectively brain dead is truly remarkable. SPS may have turned my future goals on their head, if not taken them away… but the most important thing this disease has not been able to take away is my life, and whilst there is life, there is always hope!
Regardless of the situation, I am grateful for the fact that I have been able to keep my positive and outgoing nature, the determination to push on, and not to mention, my ability to make light of a situation with a good old laugh. Medicinal Cannabis (MC) has not only saved my life but it is giving me a life again.
I’m not saying that MC is a miracle cure, far from it. It is not the only consideration involved in my improvement, it has taken strenuous amounts of rehab as well as the right treatment to get where I am today. It may not be a miracle but it has the ability to give hope. Who knows how this disease will affect me in the future, I still have a long and difficult battle ahead of me but I am determined to do what I can to live my life, as we only get one and I am not going to waste it! I’m going to get back on my bike! Once an adrenaline junkie, always an adrenaline junkie. In the meantime, I will continue my studies at Wollongong University and my rehab, no matter how hard it might be some days, the only way I am going to get better is to push myself.
Regardless of the continuous battle I go through with my body each and every day, we have found something that works, which is why we have taken the stance that we have. Not because we wanted to but because we had to. Too many people are desperate and are suffering endlessly, if by taking a stand, means that we are going to make a difference then we will continue to do so.
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