As many of you know, (Raymond) who goes by the name of Troy has been suddenly and unexpectedly diagnosed with Focal Segmental Dystonia. Once happy and healthy, Hervey Bay guy (Raymond) Troy Taylor was struck down in a matter of months and had his life changed forever. Troy can no longer go to work, or drive a car, ride his motorbike, skate at the skatepark with his children (which he loved to do as he grew up inline skating and still continued to do so with his children). Troy has a passion for sailing our boats, skating, riding motorbikes with the kids all of which he can no longer do. His whole world has been turned upside down. Our whole family has been turned upside down. The children have been in and out of school, they have had to go to stay with family on and off while treatment happens. Tracey his wife may have to leave her job to be a stay at home carer, ultimately limiting our source of income to provide food for the family as well as the brain surgery which is a massive cost. $80,000 will be difficult to come by. We don't usually ask for help, however unfortunately desperate times call for desperate measures. In September, (Raymond) Troy was diagnosed with Focal Segmental dystonia, a neurological movement disorder that affects more than one part of his body. Troy woke up in June 2017 with a stiff shoulder and sore neck. As the days went by this soreness proceeded into spasms and a tic in his neck which proceeded to his arms and back. Twisting his spine out of alignment. We went from Dr to Dr who told us to see physios and a chiropractor. We tried this with no success or easing of the pain and spasms. Troy ended up in hospital a few times where they could only give him drugs to ease the pain then sent him on his way. Tracey his wife got on the internet and did some reading and asked the GP to send a referral to a Movement Disorder Specialist who could help diagnose his condition. Troy had a brain MRI and neck MRI done which revealed nothing really out of the ordinary. Weeks went by with no relief and Troy couldn't take it anymore, he was ready to give up on life. Tracey was out one morning and Troy called her to say he was going to shoot himself in the head with his nail gun as he could not live like this anymore. Tracey immediately said call the Ambulance now. The ambulance came and took Troy to hospital where they gave him some pain relief and kept him in for a few nights. Once Troy was allowed home they just gave him some pain meds to keep taking at home. Troy's condition continued for another 9 weeks until we could see the Movement Disorder Specialist in Brisbane. We finally had a date for him to see the specialist but getting him to Brisbane from Hervey Bay was a challenge since he could not sit up at all, let alone sit in the car. (We laid him down in the car to get him down to Brisbane which was a 4hr drive). The specialist was shocked at how fast this had come on and progressed, she diagnosed him with focal segmental Dystonia. The specialist started Botox right away but said it would not be enough at this point and she would order more. Once Troy had this injection he walked out and started vomiting and was not in a good way. Tracey got him back to the hotel where they had to stay for his treatment but Troy was in so much pain and his neck was so locked up his head was lifting his body of the bed. The pain was excruciating. Tracey called an ambulance which came 2 hrs later where they gave him some pain relief and checked him in to the nearest hospital where he spent another 2 nights on pain relief. The next Botox day came around and this time they used more botox to try relax the muscles, Troy came away in even more pain where he screamed and yelled and cried. His body just would not relax and spasmed so much more. Once back at the hotel he just rolled around in pain there is nothing more we could do except give more pain relief. More days went by where we had to rely on pain relief to get him by. In this time Troy has lost 12 kgs in 10 weeks as he cannot move or eat properly. Troy has been eating from baby resealable pouches where he can only have pureed to slurp as he cannot sit up to eat normal food. A week after the last Botox session we had to travel back to the specialist to see what she thought. The specialist was a little saddened the amount of Botox used did not help him as much as she had hoped. The specialist said he will have to under go Deep Brain Stimulation. The disorder causes Troy's muscles to contract and spasm involuntarily, causing pain, tremors and twisting, among other uncontrollable movement. The symptoms continue 24hrs a day. For Troy, he cannot 100% control his muscles from spasming and twisting. It's debilitating and has turned his life upside down in a very short period of time. He has gone from living a happy, healthy life, working in a great job which he loved, to being unable to work, and even struggling with the most basic of daily activities like eating. At this point in time we have already spent a small fortune in just 3 months. Each case is profoundly different from the next and therefore requires specialized and often experimental treatment, which is not covered by the Australian Health Care System. The only effective way to find relief is to trial different therapies - available in limited places within Australia and overseas. Ok A trip to Canada to see a specialist in Neuroplasticity is another option, based in Toronto, he helps try retrain your brain.
For all troys treatments our children stay with family so that's time away from them, and sometimes the children have to be pulled out of school and there home and go stay 5hrs away as unfortunately we cannot take them with us.
How you can help:
Donate any spare dollars, whatever you're able to help with, raise awarenesses to help others understand Dystonia.
Can you -Help us find travel/accommodation support.
- A travel agent who can offer cheaper flights??
Help us raise awareness - spread it in clever places to gain attention, to reach far and broad.
Where the money is being spent:
-Monthly medications to reduce spasms $50-$100
- 3 monthly visits to neurologist for Botox injections and consults $400 -$500
- visits to neuro psychologst $300- $500 visit
- neuro physio- $300-400 session
- travel to Sydney in Jan for trial of magnetic stimulation $3000 to cover flights, accommodation travel to the trial
-possible travel to Canada in May for neuroplasticity training for a week. $7000-$10,000 flights, accommodation, and the training sessions and a passport.
- dental visits to check jaw alignment
- special remote beds to be able to sit up and eat $200
- deep brain stimulation last resort at $30,000.
- Lucy Nicholls
- Sue Ross
- Rod Ross
- Peter Chamberlain
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