Transverse Myelitis

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.

Living on Wheels

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. 

Weekend at Mon Komo

View from my room

I enjoyed a weekend by myself at Mon Komo Hotel in Redcliffe.  I had lovely sea views and was lucky to have only one day when it was overcast.  The room was well set up for me as a wheelie, just needed some of the furniture to be moved so I could get through.  I read, used the internet, had a nap.  I ate at the hotel's restaurant downstairs on Friday night.  Saturday night had a salad that Mum got for me at Woolies.  The hotel is around the corner from Mum's place so she popped in to say hello on Saturday and helped me when checking out on Sunday.  We then went for a walk along the esplanade which was crowded with people. 

Mon Komo

Redcliffe Markets

The street is closed off for the markets.  It was a beautiful sunny day so the place was jam packed.  We walked out on the Redcliffe Jetty.  It's old wooden boards have been replaced with a concrete walkway and it was very pleasant to be out there looking back at Redcliffe.  Mon Komo is very prominent seen from the jetty.  We had lunch at a cafe opposite the jetty.  We then walked to Mum's place.  Along the way she told me about some of the houses and who lived in them when she lived here during World War II.  We saw the house Mum lived in at that time.  I was picked up later and then went home. (For more on the disabled aspects of the room see my Disabled Toilets blog.)

Transverse Myelitis Meeting

A couple of weeks ago I had a very interesting time at the Transverse Myelitis Awareness Day at Spinal Injuries Australia at Woolloongabba.  It was very good to meet other people there who also have TM and find out about their history.  One lady about my age has had it since she was 12 years old.  She lived in Sydney at the time and the doctors at the hospitals were unable to give her a diagnosis.  Instead her parents took her to the Mayo Clinic in the USA to be diagnosed.  Another man got it in the 1970s and again it was difficult to diagnose.  I was interested to see how the condition manifests itself differently in different patients.  It seems there is no “typical” case.  The chances of getting it are between 1 and 8 in a million.

We had a live video link with Sandy Siegel from the Transverse Myelitis Association in the USA, which has been going for 20 years.  That is how long Sandy’s wife, Pauline, has had TM and the reason Sandy set up the TMA, because it was difficult to find information or help about the condition.  Twenty years later TM patients benefit greatly from all the voluntary work Sandy has put in to the TMA.

Some of the members who attended.

We also watched Dr Benjamin Greenberg, Director of the TM and NMO Center at the University of Texas Southwestern in Dallas.  He brought us up-to-date on what is happening with research.  He said early diagnosis is critical to ensure the correct treatment is administered.  Guillian-Barré Syndrome was the most common misdiagnosis.

It was interesting to see all the speakers and also to meet other people with TM to learn about their lives.  I met Louise Remilton, the Transverse Myelitis Group Convenor who is also in Queensland.  I look forward to learning more about TM through the TMA and from members of the Transverse Myelitis Group. 

Visit to North Stradbroke Island

Last Friday we went across to North Stradbroke Island for the weekend.  Unfortunately, Friday was very hazy and windy so not a good day weather-wise.  We went across on the Big Red Cat ferry with our car.  The crossing took about 50 minutes and I didn't see much as I was unable to get out of the car.  Fortunately we were under cover.  Terry was able to get out and have a look around.

When we disembarked at Dunwich, we had a drive around there to see where the water taxi comes in and also to see where the cemetery and the museum was.  I had an oral history committee meeting on the Saturday morning and I wanted to be sure we knew where to come in the morning.  We then drove to Point 

Lookout, stopping along the way to have a look at Brown Lake which is a popular tourist and barbecue stop.  We also drove in to Amity Point which is also right on the water and looked very nice.  We stopped at Main Beach at Point Lookout for a short time then drove to the Stradbroke Island Hotel.  This is a lovely modern hotel which looks out over the water with fabulous views from the bistro and bar.  Our room did not have a sea view but it was very well appointed for a disabled person.  See more about this on my Disabled Toilets blog.  We had lunch in the bistro and then had a nap and read.  We had dinner in the restaurant and returned to our room for the night.

On Saturday morning we had breakfast in the bistro.  The food here was delicious with generous servings and the staff were all very friendly and helpful.  We then drove to Dunwich to meet the water taxi and the oral history members who had come for the meeting.  Elisabeth, the curator of the Museum gave us a very interesting guided walk around the historic cemetery.  She pointed out the headstones of some of the people who had died from typhus after immigrating to Queensland in the mid-19th century.  Even the Brisbane doctor who treated them died in this terrible epidemic.  There is an American Civil War veteran buried here.  Many of the graves are unmarked.  World War I veterans who had "shell-shock" and people who were on the "fringes" of society ended up in a Benevolent Asylum here and when they died, they were buried in anonymous graves.  There is a rich aboriginal culture on this island.  They had an abundance of food from the sea and on the island.  They also had freshwater creeks.  As elsewhere in Australia, their lives changed when the European settlers arrived. The aboriginal culture is kept alive by their many descendants here.

We had our meeting in the Museum which is real credit to the curators and volunteers who work here.  Their work is ongoing and has really reached capacity.  We enjoyed exchanging ideas at our meeting which was very successful.  We then went to the Little Ship's Club for lunch, looking out over the water.  Terry came to pick me up and we returned to our hotel room for a rest.  We had dinner at the hotel, meeting with a couple who now live on the island.  It was good to see them and we had an enjoyable evening catching up on our lives for the past few years.

On Sunday we checked out of the hotel.  On the drive to Dunwich we could see the damage from the recent bushfires.  Fortunately no buildings were lost, but the wildlife would have suffered. We stopped at Myora Springs and watched children enjoying themselves in the water there.  It was a beautiful spot.  We then caught the Big Red Cat back across to the mainland, arriving home mid-afternoon.  I was very tired but very happy with the weekend.

Cultural Day Out

Yesterday 11 January I was pleased to go out with my grandson, Jordan.  Our first stop was the Gallery of Modern Art which is a great contribution to the cultural landscape of Brisbane.  We saw the exhibition "Falling Back to Earth", a very large exhibition by Cai Guo-Qiang (pronounced tsai gwo-chang).  This is his first solo exhibition in Australia so Brisbane is very privileged and fortunate to have his work displayed here.  We first looked at one room of the exhibition which had a very large eucalyptus tree on its side, partly suspended.  It was removed from a development site and now as a dead tree, stripped of most of its leaves, the viewer can see close up the beauty of the destroyed tree, its many colours and textures.  We can also think about the environment and the many similar trees that are destroyed and used to make the homes we live in.  Children were encouraged to draw the tree and results were pinned to the wall.

In an adjacent gallery is a magnificent work showing 99 replica animals of many different species shown drinking from one large pond. Our guide told us the animals had been created from goat skins and plastic.  They look very realistic.  There are tigers, lions, hyenas, zebra, giraffes and many others.  There are predators and prey, yet in this display they are together sharing water, symbolising a hope that the world may live in peace despite our differences.  A drop of water falls from the ceiling periodically to break the surface of the pool.  Our guide told us the room was supposed to be a place of quiet contemplation, however, this was not possible as there were very small children making a lot of noise.  I thought they should have been banned so there might be the possibility for quiet contemplation.  The other aspect that would be difficult for small children is that there is no real barrier between the animals and the public.  There is a walkway around the animals but only sand separating them - such a temptation for small children.

We followed our guide to the gallery which housed the installation that gave this exhibition its title "Falling Back to Earth". Here were displayed 99 replica wolves, 1/3 the size of normal wolves, every one different, in a different pose.  Our guide explained the wolves are racing to reach a glass wall and crashing into the wall, falling, with various degree of injury then getting up and doing it all over again.  You can interpret this in whatever way you like e.g. hitting an obstacle on the way in life, but picking yourself up and trying again.  Our guide said the gallery thought the wolves would frighten the children because of the savage expressions on their faces but quite the contrary.  The children were very intrigued with them. It was a thought provoking exhibit.  One of the best things about this whole exhibition was that we were permitted to take photographs.

Our guide told us that Cai Guo-Qiang was a renowned fireworks artist.  Near the GoMA entrance a video was playing on a large screen showing several of the fireworks displays that he had made.  They were dazzling, works of art, not just different coloured lights in the sky.  He also had a work displayed in the Queensland Art Gallery and we went to see that before we had lunch at the Art Gallery cafe.

We then moved on to the Lyric Theatre, though a little early, to be there for the matinee performance of "The Rocky Horror Show".  This was a fabulous musical which I had seen before so many years ago that I had forgotten most of it.  The main role of Frank N Furter was played by Craig McLachlan and he gave a great performance.  It is a timeless classic, Brad and Janet's car breaks down near a strange castle inhabited by even stranger "people".  The audience thoroughly enjoyed the rendition of "The Time Warp", which was repeated in a fantastic finale.  Jordan said it was "brilliant.  That word pretty much sums up the whole day.

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Heat wave - 4 January 2014

Last Saturday, 4 January, we experienced the hottest summer, for many many years.  The whole state sweltered in 40degC+ for more than a week and then it was Brisbane's turn.  We had 44degC here.  I didn't go outside at all but had the luxury of airconditioning to keep me cooler, though the A/C did struggle and kept temperature down inside to 30degC.  We had planned to have a barbecue but postponed it till the next day when the temperature had dropped to a tolerable 30degC.  It was our first barbecue for 2014 and as usual it was delicious.  Terry is great at doing barbecues.

1 January 2014

Today is the first day of the first month of the year 2014 and I've realised it is a long time since I've added a post to this Blog.  I had used it as a sort of diary for a long time but then got lazy and used Facebook instead.  So my absence from this Blog is not because I haven't done anything interesting in my life since June 2012, it's just that I've failed to keep up this Blog.  Last year was a mixture of good times and bad as are all years really.  The two happy highlights for me were celebrating my 60th birthday with my family and friends and then my trip to Italy with my husband, Terry, and my sister, Sharney.  I am still writing about that trip in more detail which will be a new Blog when finished.  I plan to focus on the enjoyment of the trip and also the challenges that arose travelling as a disabled person. We had a good Christmas with all my family, with lunch with Terry's family and then dinner with my family.  We look forward to 2014 and hope that we will have more happy times than sad times.

Centenary Suburbs Historical Society website

I'm a member of the Centenary Suburbs Historical Society and we were very pleased to launch our web site last week which can be found at http://cshsoc.org.au/.  We had our local Councillor Matthew Bourke in attendance as our President, Caroline Hamilton, officially launched our site at the Mount Ommaney Library. It was an exciting moment for members as it has taken a while to organise and will now give the public access to their local history and perhaps boost membership of the society.  Charlotte Young was formally thanked for designing the website and showing me how to manage it, which involved many hours  uploading historical facts and photographs.  Our historian, Meg Gordon, shared her historical research on the website.

My Mum turns 80

A few weeks ago, my mother, Val, celebrated her 80th birthday. The family had arranged a surprise lunch at a new "posh nosh" at Redcliffe with several members of her extended family including spouses/partners. There were three grandchildren who were not able to attend, being interstate or overseas. We had a delicious lunch and then surprised Mum by taking her upstairs to a lovely room overlooking the water, where she would spend the night. There we were able to chat more easily and enjoy the view. My sister Sharney had arranged for the room to be decorated with "80" balloons and streamers and had a beautiful dark chocolate cake ready with candles. Granddaughter, Nicole, from London had sent a bottle of Moet champagne to mark the occasion. My brother Kevin and wife Mary had flown up from down south. So Mum had her three children there, five of her eight grandchildren and her great-grandson there. This was a very happy day for all of us and especially for Mum to have most of her family gathered around her. Photos include Mum with her children, the grandchildren who were there and a "four generations" photo.

Disabled Travel

In October 2011 I travelled without my husband, for the first time, to attend a conference in Melbourne. I had a friend accompany me as my “carer” and fellow conference attendee. This would be my first “adventure” as a disabled person. We flew with QANTAS who assured me they would “look after me” and they did. They have a “sky chair” that they leave on board should I have needed to use the toilet (fortunately, I didn’t). We arrived in Melbourne and got a maxi-taxi with two other friends who were travelling to the same hotel. Unfortunately, the driver had never taken a disabled passenger before in his brand-new taxi. He managed to get me on board then broke open new plastic bags containing the parts used to secure me in the taxi. With some help from me and my friend, we somehow managed to get me strapped down, though I did not feel really confident – should have left and asked for another maxi taxi. Anyway, we arrived at our hotel without incident. I had booked a room at this hotel for two reasons – it was close to the conference venue and they had a “disabled” room available. A porter accompanied us to our rooms with our luggage on a trolley. Before he left the room, I asked to look around. I wheeled in to the bedroom where I would sleep. (They had a sofa bed made up in the lounge room for my friend). The bathroom was off the bedroom and I asked the porter to open the door. It would only open part way before it hit the bed – impossible for a wheelchair to enter. In fact only a thin person could enter. I protested that this was “ridiculous” for a disabled room. His solution was to move the bed further over so I was able to enter. You couldn’t swing a cat in that bedroom, it was so small. My friend had to put my clothes in the wardrobe for me as I couldn’t get to it. I had ordered a shower chair, which wasn’t there, but when I asked, they brought it up later. The bathroom towels were on a high shelf. The kitchen crockery was in a high cupboard. The refrigerator could only be opened part-way. I couldn’t reach the tap or the kettle switch. Overall, this “disabled” room did not pass the test. I was fortunate to have a friend/carer with me. I know disabled people do travel on their own but I can’t see how they would manage in a room like this. We asked the manager to come to our room and politely pointed out the shortcomings and he seemed sincere and appreciative of our feedback. I will follow up with the hotel to see if they made changes. This situation is partly my fault as I should have checked the Spinal Cord Injuries Australia web site http://scia.org.au for what they say is “disabled” accommodation. A disabled traveller needs to do a lot more research, ask more questions to ensure they will have a successful holiday. However, there are varying levels of disability and most able-bodied people have no understanding of the issues we face, so travelling for us will always be a challenge. Anyway, we managed and enjoyed the conference, looking around Melbourne, and eating at some great restaurants.

National Oral History Conference, Melbourne

Last weekend I attended the National Oral History Conference in Melbourne. The theme was “Communities of Memory”. I went there with my friend, Lena, who was also attending the Conference and we both enjoyed it very much. It was good to catch up with interstate colleagues/friends and meet new ones.

On the first morning we attended a Recording Techniques workshop at the ABC which was run by Michelle Rayner. There was a large group and we all talked about our projects and the audio recorders we used. We then went in to a recording studio to see how the radio people edit their work. In the afternoon we went to the Australian Centre for the Moving Image in Federation Square where we had some practical advice on video recording from Catherine Gough-Brady inside a lecture theatre then we were went outside to practise. Later in the afternoon Al Thomson, Kevin Bradley and Michelle Rayner presented an update on the Australian Generations Project and the expected outcomes.

Day One of the Conference itself began with Keynote Speaker Steven High from Canada whose paper was entitled “Communities of Memory in Practice: A Reflection on the Montreal Life Stories Project”. He spoke about communities experiencing the aftermath of catastrophic change citing the example of a mill which was the lifeblood of a town being closed down. He also spoke about the Montreal Tutsi refugees and the way they are remembering the 1994 genocide. It was a very powerful presentation. The rest of the day we had a number of excellent presentations on a variety of topics including digital storytelling, culture and lifestyle, and artistic approaches to documenting oral history. At the end of the day we had a Welcome Reception to enjoy catching up with old friends and meeting new ones over a glass of wine.

On Day Two we had our second Keynote Speaker Nathalie Nguyen with her paper “Memory and Diaspora: The Vietnamese Refugee Experience”. She said South Vietnamese soldiers were not acknowledged in the now united Vietnam – their cemeteries have been razed. She interviewed three former female South Vietnamese soldiers now living in Australia. Their role has not been acknowledged though they made a large contribution to the Vietnam War but they could only reveal their army life once they had arrived in Australia. Each had a different reason for joining the Army, mainly for adventure and to break free from the “normal” female role in their society. Once again this was the first of a number of great papers presented during the day including one from our own OHAA Qld branch members, Helen Klaebe and Ariella Van Luyn about the workshops we held earlier in the year.

On Day Three more terrific papers culminated in the final paper and third Keynote Speaker Peter Read with his “The Limits of Oral History”. He spoke about the horrors of the Pinochet coup in Chile in 1973 and the following years. He told us about the “disappeared”, the fate of many of whom is still uncertain today. One particular “house of horror” was in the centre of Santiago and is now a memorial place where relatives of the “disappeared” gather in silence, pasting photos of their lost loved ones on the walls. The government seems uncertain about what to do about this building as it tries to hide the past. Oral histories of the survivors are vital in ensuring those terrible times are not forgotten, but then how far do we go with our remembering. Read also talked about Aboriginal Reconciliation and drew similarities with the Chilean experience – horrific past and how we should remember it. Read said he was “turned on by place” and we must hear the voice of the subject – value the voice! Every generation will tell the story in a different way. He finished with a quote (translated) written by a young woman on a cigarette paper to her friend (also imprisoned), that was secreted out of her Santiago prison, knowing she would soon be killed. “I remember when I met you in the house of terror. In those moments in which a light was a dream. Or a miracle, however, you were light in the mist. We were one in one reverse. Today thousands of reverses. Later I see you as you were before, as I know you are today, in some other place, always looking to windward. We will meet across the fog that we will dissolve. Do not forget me.” When Read stopped speaking the audience sat silently stunned. It was the most powerful oral history presentation I had yet experienced.

That night Lena and I had dinner in Greek restaurant, Tsindos, which we very much enjoyed. The food and atmosphere was delightful. There were two Greek guitar players entertaining us during our meal. It was a wonderful way to finish off our days at the Conference.