My main interest is oral history which is a means of making an historical record using the voices of people speaking from their own experiences. I have lots of other interests as well - book club, local history, playing violin, photography.
I have a very rare disease, Transverse Myelitis, which affects 1-8 in a million people. I contracted it in July 2008 immediately following my return from a holiday in Europe. I don't know how it happened though I endured numerous tests to rule out many other illnesses including HIV, syphilis and Lyme Disease. Therefore I have Idiopathic Transverse Myelitis which basically means no one knows why this happened. TM is an autoimmune disease so something, perhaps a virus or bacteria entered my body and my immune system thought my spinal cord was being attacked leaving the myelin sheath (the outer coating which covers my spinal cord) exposed. The commands from my brain to my lower extremities were partially blocked at T7, just above my waist. Therefore, I am a T7 incomplete paraplegic. All this was not immediately apparent. It took about three months to get that far. In the mean time, my legs gradually became weaker. I could no longer run or even walk properly. I was holding on to bannisters, leaning against poles, using shopping trolleys like a wheelie-walker before I was hospitalised after I could no longer feel the pedals to drive the car. After tests, I was treated with intravenous steroids. Further hospital stays involved more intravenous drugs, but little or no exercise so returned home weaker. This disease, likely due to its rarity, is difficult to diagnose, particularly when no lesion is shown on an MRI. Each TM patient has a different presentation of the disease. Some have one attack and recover in a short time. Some, like me, are left with permanent damage.
I joined the Transverse Myelitis Association, based in USA which has the most information about this disease. They also have a YouTube channel here. One of the things they emphasise repeatedly is the importance of exercise. I was very fortunate to discover the Sporting Wheelies & Disabled Association gym. I began an exercise program there while being on the waiting list to commence the Walk On program (now called NeuroMoves). I began that in 2011. Walk On in Australia is run by Spinal Cord Injuries Australia (SCIA) and is based on the Project Walk program in the USA. It involves two hour sessions of intensive repetitive exercises. Initially I attended two or three times a week until I had reached the limit of my potential. Now I have a one hour Personal Training session (weights and aerobic) and one Walk On session each week with an Exercise Physiologist. I practise standing, work on core strength and practise walking on a treadmill while in a harness. The cumulative effect of this exercise has been greater strength and, most importantly confidence to take care of myself.
TM Day in Brisbane, May 2015
Another organisation which has been very helpful to me is Spinal Injuries Australia (now called Spinal Life Australia), which is based in Brisbane. They organise annual TM meetings with live video links to watch doctors in the USA tell us about the latest research on TM. Spinal Life has a TM Support Group which attends these meetings. When you have a rare disease, it is good to speak with others who also have it so you can compare notes. Spinal Life is tremendously supportive of people sustaining spinal cord damage throughout the State.
What do all these organisations have in common, apart from their desire to help people who have a spinal cord injury, including TM? They are all not-for-profit so rely on fundraising and grants to maintain their services. They all do a great job.
I haven't been prompted to put a post on here for a while. I have been making more use of Facebook and not giving much attention to my personal Blog. There haven't been many changes in my life since I last wrote. It is now February and I'm getting back in to the swing of things after the Christmas break. Today, I've learned a new skill - wheel stand. My instructor, George Kambouris, Living on Wheels, makes it look very easy as this is a skill he has been practising since he was a child. We met at a park in Chermside this morning and I watched with envy when he demonstrated how "easy" it was to do a wheelstand. Of course, we both know it is not really that easy but as with any skill worth having, it takes lots of practice. George inspires confidence and is very encouraging. He showed that once this skill is mastered, it will make it easier to negotiate a number of surfaces that are not flat, such as grass. I need to relax while I'm doing the wheel stand and eventually I will be able to travel over uneven surfaces. George's training is one of the courses supported by the Brisbane City Council who are to be commended for making this instruction available.
