In 2014 I suffered a stroke leaving me 100% paralysed on my left side of my body at the age of 42.
From there I spent 5 months in a wheelchair in hospital undergoing rehabilitation to try to break through the paralysis and learn to walk again. I can sort of walk with a stick but they did little to try to get my arm working again so its still useless. Not dead or beyond hope but after following everything I was asked to do to try to get everything working (my goal was to return to fully normal, their goal only was to teach me to cope with life from a wheelchair but I knew this was unacceptable). I'm still on medications and require equipment, but here in Australia there is no possible hope of treatments or recovery with our conservative antiquated system. My last room mate in hospital had the mirror opposite stroke to me (he was right side paralysed) and decided on amputating his arm (again it was ignored like mine was) as life with a living but useless limb is itself huge difficulty.
However there is a treatment available overseas in Miami which may give me the use of my arm and leg back, along with all the muscles you aren't aware of because the subconscious part of the brain handles them. This treatment is not even being considered for study support in Australia even though its been petitions for for years. So for now and the foreseeable future my only possible hope for improvement is to try to get treatment in Miami called Perispinal Etanercept.
While people look at me now and assume I'm mentally disabled I'm not, just physically disabled. And as such I have both the point of view as a normal person but also as a disabled person. It's painfully clear how disabled people do NOT get the practical support we think they get. I lost all my savings just trying to live and I get no support of any kind. There's no such thing as free handouts. For someone as young as me, retirement is out of the question and care facilities are aimed at people 30yrs older than me so I'm in a gap that isn't cattered for. I have to work full time just to try to keep a roof over my head and pay bills. I live alone and while you may think living with one arm/leg is easy and try it yourself. The problem is even if you try standing on one leg you are still using muscles on both side of the body without being aware of it. But mine still don't work and to even walk I have to consciously control the large muscles so the absence of subconcious muscle control is painfully obviously, literally. As the right side of my body is constantly 24/7 trying to compensate just to keep balance. Sitting upright is constant pain and discomfort, so is lying down. Digestion is a problem with the weakened muscle control. Basically everything you ever do, whether you are aware of it or not, is now a painful and fatiguing undertaking.
My understanding of the treatment is it reduces the swelling of the scar tissue of the damaged region of the brain, allowing signals to get through . My muscles are not damaged its the signals from the brain not getting to them anymore that prevents me from living and working a normal life. I will require interviews and possible new tests and CT / MRI Scans with the clinic in Miami to at least confirm I'm considered a suitable candidate. This all costs up front money I dont have. Talking with my GPs and my own research I seem to be a perfect match for treatment, which has had successes with people a decade after their stroke.
I've done everything I can within Australia for treatment and it didn't work. PE treatment is the only treatment or emerging treatment on the planet that might help me. The only one and all I am after is a chance at it. Even if its to find out I'm not actually suitable its something to try and well worth finding out, the not knowing for sure is torture. Finding out will take a few thousand US$. The treatment itself may be between USD10-20k. The rest is to travel there. I would need to travel business class to have any hope of getting into/outof plane seats and I would have to travel with someone as a carer or else risk airlines denying me boarding. The clinic is in Miami which I doubt has cheap accommodation either. Bookings for interviews are made months in advance and likewise the treatments so it could take maybe a year anyway. But this is all way beyond my ability to save, I still have my old job but at about $15k less per annum and with huge expenses just to cope to live day to day. So saving myself is out, the government won't allow me to access my superannuation savings as I'm not suffering a fatal medical condition (suffering along is not enough, and suicidal doesnt count it seems). Basically being trapped into living a degraded life isn't worth bothering with when there is a possibility to improve things and maybe restore to a fully normal life again. I just want a shot at that or maybe a donated handgun so I can end this suffering finally. Its been 4yrs and the health care system has failed me with no possibility of future hope. Yet hope exists in Miami and I want to take it.
My story isn't exciting and many would say I'm lucky but I'm not one of them. Just because many die from stroke is not good enough to be happy with staying disabled. Especially the way others look at and treat me day to day. I wish it had just killed me, I have no family for it to effect, the world wouldn't notice.
So if you'd like to help contribute that'd be awesome. Even if its just to help my day to day expenses. But if I can reach a few thousand I can book/pay for the consultation interview and maybe some tests to help them decide if I'm suitable. Or not. After that I'll have to see, if the answer is no at least I'll have an answer and can stop there, maybe use the funds to help medication/equipment/transport costs. But if its Yes which i'm confident it will be , I'll need the larger goal of covering travel/accommodations costs for two plus the treatment costs. I have a friend who's willing to travel with me and knows my disability reasonably well and can help if i have difficulties. I don't have a time constraint on this yetand not sure there is one other than the sooner the better. Step one : confirm suitability, step two: treatment. Everything related to stroke recovery is time critical, so if you or someone you know suffers one don't delay getting medical attention and no matter the struggle, dont rest, get into recovery as fast as possible and participate. You need will power.
- Marilyn Smith
- Ian Measday
- Jessica Sun
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more