I think it is just a year since Simon came home from the hospital. People say that time flies. This time it is the opposite. We have struggled through every day. Pleased to say that it has been worth it. All of the things that I was warned about: falls, injuries, bedsores, infections, depression, pain. These have happened. Simon has dealt with all of it, and he is coming through like a real trooper. Some of you knew he would and we thank you for your encouragement.
We finished with the BIRCH team last week, and have to wait to begin with Spingboard in the city in January. In the meantime I have hired a private physio for Simon and she has been fantastic. She has been working on Simon's arm where everyone else had ignored it. I asked him to put his arm out and move a cup yesterday - with massive effort, and mainly from the shoulder he managed to move the cup. This is priceless. Some of you may remember the post where I reported that Simon had asked for his arm to be amputated.
Simon has started to listen to some talking books that Dave sent a while ago. They are all set in Brighton so he has been reminiscing about all of his old haunts. I wonder if any of the old haunts are still going? We know things have been very bad in the UK and hope that the good pubs have survived. At least the Bugle.
We were so sad to hear about Mike Barber. I can only smile when I think of him. I hope he goes to heaven.
Then we heard about Gerry, and we just know that you guys are looking after Trish. We send our love and our prayers.
Marian xx
Tuesday, December 7, 2010
Monday, November 1, 2010
1st November: Simon's first lecture
Simon gave his first public lecture since his stroke today. He spoke in front of around 40 speech pathology students at Flinders University on the subject of 'Living with Dysphasia'. You can see him pictured here with his speech pathologist, Kate Elliott, who has helped him to get this far. It was a wonderful speech, and the students gave him a sustained round of applause. Simon aims to write this up for a good journal. I am so proud of him.
There are quite long spaces between blogs now because our lives are so busy. Simon is about to graduate from the BIRCH programme at the end of November. Next he will start with the Springboard programme in the City, and we are looking forward to this next stage.
The powered wheelchair has gone back for some adaptations and to be covered in 'racing vinyl'. Then it will be his for keeps. It has been great for Simon to get around by himself. He can manage trips up to the village by himself, and is getting ready to go further afield. Jeremy, from the Royal Society for the Blind, is going to come back a couple of times to try out new routes, and maybe try access to various forms of public transport into the City.
We have opened talks with UniSA about return to work plans. They have moved Simon's School to Mawson Lakes (four hour round trip from McLaren Vale) so we need to have serious discussions about that. Simon will be in the City at least once per week for his Springboard programme, so I am hoping that UniSA can arrange office space for him at a convenient place in Adelaide.
Meanwhile, I have been working my socks off. So much marking I must be a markswoman by now. Only a few more weeks and I will be able to take a break; need one. I long to sit under a tree and read a good book from start to finish. I still read a lot, but in snatches. Most recently, I read 'The Winter of Frankie Machine" by Don Winslow (this was good), also Damian McDonald "Luck in the Greater West" which might have been less confusing had I known anything about the suburbs of Sydney. My favourite recently was Willy Vlautin "The Motel Life" of which the last two lines are "I hoped. Because hope, it's better than having nothing at all." For all you Hammers fans.....
There are snakes about in the Vale just now - waking up looking for a bite to eat. Skippy is on full alert. Luckily, there is quite a large population of frogs nearby (amphibians, you understand) and the snakes should get a good feed on those. There was a brown snake spotted in the garden of the house opposite us. By the time news of this reached us it was reputed to be 4 inches thick and eight feet long. A bit like those giant spiders that chase English tourists through the botanic park every year.....
Love Marian x
Monday, October 4, 2010
4th October: Marathon Backgammon
We had a lovely long weekend. I can't remember the reason for this week's public holiday (Queen's birthday maybe? Gaud bless her) but am very grateful for the day's rest. We had Blake visiting Friday/Saturday, he is the wonderful guy that loaned us his Grandad's wheelchair. We were so inspired by Blake; he is four years on from a massive brain injury. Now at Uni, he is developing into a very special man.
Saturday was taken up by the Australian Rules footie final (replay after an unprecedented draw the previous Saturday). Simon and I were pulling for St Kilda. This is a bit like supporting West Ham, and you might guess the result. Thrashed by around 60 points. They were robbed!
In the beautiful spring weather, Simon and I are living in the back yard. We spent Sunday playing backgammon. The last time we played, I could beat him so easily that I would let him win occasionally. This time he walloped me 6-Nil ! Always a bad loser, I insisted on playing on until nearly dusk, eventually prevailing at 7-6. But in truth, you cannot imagine how delighted I was at being beaten hands down in that first session. Our man is back.
We have been testing Simon's new power chair for the last ten days. He is great at driving - really accurate. My efforts at driving it leave large dents in the wall. The chair does need some further adaptation and will need to go back for modification, but we are nearly there. I have had my spanners out and made some elementary improvements.
We completed another paper this week. This was the write-up from Simon's keynote in 2009. Simon is making progress with the powerpoint that he is going to present to the speech pathology studens at Flinders.
Many congratulations to Stephen Pantlin and his wife on the birth of their little one. We hope that you enjoy every precious moment.
Tonight, my thoughts are with Sucheta. I am sending you an electronic hug, my friend, and next time I see you I will smother you with a real one.
Much love, Marian xx
Saturday was taken up by the Australian Rules footie final (replay after an unprecedented draw the previous Saturday). Simon and I were pulling for St Kilda. This is a bit like supporting West Ham, and you might guess the result. Thrashed by around 60 points. They were robbed!
In the beautiful spring weather, Simon and I are living in the back yard. We spent Sunday playing backgammon. The last time we played, I could beat him so easily that I would let him win occasionally. This time he walloped me 6-Nil ! Always a bad loser, I insisted on playing on until nearly dusk, eventually prevailing at 7-6. But in truth, you cannot imagine how delighted I was at being beaten hands down in that first session. Our man is back.
We have been testing Simon's new power chair for the last ten days. He is great at driving - really accurate. My efforts at driving it leave large dents in the wall. The chair does need some further adaptation and will need to go back for modification, but we are nearly there. I have had my spanners out and made some elementary improvements.
We completed another paper this week. This was the write-up from Simon's keynote in 2009. Simon is making progress with the powerpoint that he is going to present to the speech pathology studens at Flinders.
Many congratulations to Stephen Pantlin and his wife on the birth of their little one. We hope that you enjoy every precious moment.
Tonight, my thoughts are with Sucheta. I am sending you an electronic hug, my friend, and next time I see you I will smother you with a real one.
Much love, Marian xx
Wednesday, September 22, 2010
22nd September 2010: Anniversary and other landmarks
We celebrated another wedding anniversary last Friday. Here you see us on that day pictured at our local Mexican restaurant (recently opened...the chef is not Mexican, and probably not a chef, enough said). However, nice ambience and we were happy.
This week we were invited to have a look at a new rehab programme called Springboard. It is located deep in the centre of Adelaide and we were daunted by the journey. It turns out to be brilliant and exactly what Simon and I had hoped for. A post-medical rehabilitation programme that runs for 1-2 days per week. It includes speech therapy, physiotherapy, and occupational therapies. The people that we met were so positive and committed. They told living stories of other clients who arrived in wheelchairs and left walking. They are prepared to take us on for up to three years. We are hoping to combine this with a return to work programme for Simon.
Here we hit a snag. While in the City, we decided to walk across to Simon's office to pick up some papers and things. He had not been there in over a year. Astonishingly, his office building has no disabled access. We did get into the building with the help of a colleague, Adam, who hauled Simon's wheelchair up a step through a side entrance. It was impossible to reach Simon's office which is down a flight of stairs and there was no ramp. Most disturbing, the toilets were inaccessible for disabled people. I did think poorly about UniSA at this point. I have reported it all to the HR department and hope that they will be able to improve matters.
Not to be discouraged, Simon and I took our first trip on the Adelaide to Glenelg tram. These are accessible, but you have to let the driver know you are there so he can put a ramp out. The tram drivers were brilliant I must say. We stopped off at the City shops (Rundle Mall) for some inevitable CD shopping, then went onto Glenelg (the bay) by tram and stayed there for an hour.
It was an exhausting day, we learned a great deal, and returned feeling challenged but inspired. My inspiration is that I can now see a day when Simon will be independent of me; he will be able to make his own choices about what he does, when, how and who with. I know that very often he would rather be out with the lads than listening to my endless stories of the wonders of Flinders Uni in between commentary on the progress of my new vegetable garden (a patch of ground behind the shed).
Caught up with some research students today, one recently returned from fieldwork in Malaysia. Heaps of data, but the government policy context keeps shifting. No worries, it can only add flavour to the thesis.
Love to all,
Marian xx
Monday, August 30, 2010
30th August: Rosy knees
Spring is upon us and Simon has decided it is time to change into shorts! Having spent most of his day in the garden he has a wonderful pair of rosy red knees. We got into gardening at the weekend - more veggies: tomatoes, zucchini, eggplant, and far too many chili plants. We are in a contest with our friend, Kerry, to see who can grow the first zucchini from the same seed packet - this could get more competitive than Tenantry Down Allotment Association. We are harvesting spuds and so much broccoli. I have discovered that Broccoli and Blue cheese soup is delicious, and has the added benefit of being a super-food.
Simon is working on a powerpoint that he will present to speech therapy students at Flinders University later this year. Also working on a paper with Matthew G-C on issues concerned with the preservation of archives in low-lying pacific nations. This has been a very interesting project for all of us, and Matthew is making great strides as an early career researcher.
Have just completed the first round of assessment with my Management students at Flinders. I am so pleased to see them engaging and performing well at this early stage. I love them to bits.
Will post some pictures on our Wedding Anniversary.
Love Marian xx
Simon is working on a powerpoint that he will present to speech therapy students at Flinders University later this year. Also working on a paper with Matthew G-C on issues concerned with the preservation of archives in low-lying pacific nations. This has been a very interesting project for all of us, and Matthew is making great strides as an early career researcher.
Have just completed the first round of assessment with my Management students at Flinders. I am so pleased to see them engaging and performing well at this early stage. I love them to bits.
Will post some pictures on our Wedding Anniversary.
Love Marian xx
Friday, July 30, 2010
30th July: Onwards and upwards
Simon has been making significant progress over the last few weeks. It seems like we turned a corner at the 12 month mark, and despite all the pessimism emanating from the research data, his progress has accelerated markedly. Simon now walks regularly holding onto a fixed rail and can manage as much as 50 metres in an hour. The effort that this takes is equivalent to me walking around 5 kilometres, and as a consequence he is losing weight again. In the last two weeks, Simon has learned to stand up from his chair without holding onto the rail. He can stand and balance for around 3 minutes at a time. Once this skill is fully honed he will be able to try walking with a quad stick.
Even more progress has been made in speech therapy. While it is true that my ability to interpret is now very advanced, Simon has been able to hold detailed and complex conversations with his consultant (the wonderful Professor K) and to make and receive telephone calls. He spoke with Stephen Pantlin last week, they were both close to tears I think. Simon now regularly sends email independently, and has stepped up his ebay activity to the extent that we may need to buy a new house to store all the new CDs!
Professor K has suggested that Simon should begin planning his return to work, and recommended that he start by attending some research seminars at the University. We are hoping to arrange this soon.
Meanwhile, we continue to wait for the powered wheelchair. It has at least been ordered, but outrageously we are told that we may have to wait until Christmas for delivery. I know that it is possible to telephone the manufacturers in the USA and have the chair custom-built and shipped within two weeks, but government departments don't work like that. Ho hummm.... It would be pleasingly ironic if Simon were to be walking independently by the time his chair arrived.
We did get given a new powered bed for Simon - we can raise it up and down, lift the head rest to a near sitting position etc. This is much more comfortable for him, although a bit odd with both of us in adjoining single beds. I feel the cold without him. I have tried to persuade Skippy to sleep on my feet to warm them up, but he prefers to sleep on Simon's tummy.
Heard some rumour about Beckham joining West Ham. Oh yeah....
Love Marian x
Even more progress has been made in speech therapy. While it is true that my ability to interpret is now very advanced, Simon has been able to hold detailed and complex conversations with his consultant (the wonderful Professor K) and to make and receive telephone calls. He spoke with Stephen Pantlin last week, they were both close to tears I think. Simon now regularly sends email independently, and has stepped up his ebay activity to the extent that we may need to buy a new house to store all the new CDs!
Professor K has suggested that Simon should begin planning his return to work, and recommended that he start by attending some research seminars at the University. We are hoping to arrange this soon.
Meanwhile, we continue to wait for the powered wheelchair. It has at least been ordered, but outrageously we are told that we may have to wait until Christmas for delivery. I know that it is possible to telephone the manufacturers in the USA and have the chair custom-built and shipped within two weeks, but government departments don't work like that. Ho hummm.... It would be pleasingly ironic if Simon were to be walking independently by the time his chair arrived.
We did get given a new powered bed for Simon - we can raise it up and down, lift the head rest to a near sitting position etc. This is much more comfortable for him, although a bit odd with both of us in adjoining single beds. I feel the cold without him. I have tried to persuade Skippy to sleep on my feet to warm them up, but he prefers to sleep on Simon's tummy.
Heard some rumour about Beckham joining West Ham. Oh yeah....
Love Marian x
Monday, July 5, 2010
July 5th: 365 days
We are exactly one year into Simon's journey. I take a deep breath and hold back some tears. I remember the terrible things that were happening that night a year ago, the confusion, darkness, pain, fear, hopelessness. What if I had lost him? When I saw him this time a year ago he was covered in tubes and wires and a priest was standing over him. We have come a long way.
Simon was at the rehab clinic today and I was at work so we did not get to mark the day, but tomorrow we will. Simon will have lunch with Jeremy from the Royal Society for the Blind - Jeremy helps Simon to find his way around the town in his wheelchair and they sneak into the pub quite often, I think. Tomorrow evening, my family are gathering at our house for a pizza extravaganza (take-away). We will celebrate Simon's survival and our future.
In the last year I have learned more than I was ever taught or self-taught, and come closer to Socratic truth than was comfortable. The one true thing that I know... I love Simon.
Love Marian xx
Simon was at the rehab clinic today and I was at work so we did not get to mark the day, but tomorrow we will. Simon will have lunch with Jeremy from the Royal Society for the Blind - Jeremy helps Simon to find his way around the town in his wheelchair and they sneak into the pub quite often, I think. Tomorrow evening, my family are gathering at our house for a pizza extravaganza (take-away). We will celebrate Simon's survival and our future.
In the last year I have learned more than I was ever taught or self-taught, and come closer to Socratic truth than was comfortable. The one true thing that I know... I love Simon.
Love Marian xx
Friday, June 18, 2010
19th June: Hello again
It has been a long time since I found my way to this blog, sorry guys. Have been very busy juggling work, home, and Simon's therapies. Today finds me up at an early hour having watched the England match at 4am.
Simon continues with rehab therapy. He travels twice a week to Fullarton for physio, and has speech therapy at home. We are still waiting for a powered wheelchair, although there is some hope that this might happen soon. I was unable to buy this independently. We have had many ups and downs: a couple of falls, pressure sores, and the inevitable depression. On the upside, Simon's speech is really improved, and he has recently made good progress in physio. This week he walked 6 lengths of the parallel bars in the gym (around 60 metres in total). He has also been cooking 2-3 times per week using a slow cooker and lots of chili!
Simon has rediscovered E-bay and has successfully bid on around a dozen CDs. He has also worked out how to download music again. Music has been a lifebelt for us. We managed to go to a concert two weeks ago. A local band, the Yearlings, were playing in McLaren Vale in an old converted church. It was a bring your own grub arrangement. Simon and I turned up with fish and chips in newspaper - everyone else had delicate platters and canapes!
We have had plenty of rain which is good for our veggies. My spuds are up, and the greens are nearly ready. We have grown some wicked, blow-your-socks-off radishes and some rather pathetic beans. I have a constant battle with pests and insects and can often be found hunting caterpillars by moonlight. I found a tip in an old gardening book which advised placing fake plastic butterflies amongst the brassicas to deter the cabbage white butterfly. I spent several hours manufacturing plastic butterflies from old margarine tubs only to discover that they attract the blighters!
Simon's speech therapist is helping him to learn to use his mobile phone. We are planning to go to Noarlunga next week to buy a phone with a full keyboard so that he can text more easily. If you receive odd messages, you might expect them to be from Simon. Apologies to Aidan who regularly gets phoned by accident being first in the address book. By the way, congrats to Aidan on qualifying for his bus pass.
Skippy is as canny as ever. He has our care assistants wrapped around his little paw persuading them that he hasn't been fed for a week and desperately needs an ear rub. It has been cold here and he is a master at finding the warmest places to sleep; we could patent him as an organic heat seeking device. To his credit, the mice have disappeared (there may have been some RatSak involved).
My sister, Margaret, has been having a battle with skin cancer on her face. She has been very stoic about it, but it is a rotten thing. Last night the two of us went out to dinner together for the first time in years. It was really nice. Inevitably we ended up reminiscing about our complicated upbringing . There are only two people in this world that I have truly hated. The other one was Margaret Thatcher.
Thanks to everyone who has kept in touch through the blog and on email. Again, my apologies for being such a slug with the blog. I know that my family in England have been through some difficult times with the passing of our dear Aunt Jean. We have been thinking of you all.
I pick Greece to win the World Cup - who will bet me a dollar? Am even prepared to double it up on West Ham winning an away fixture next season....
Love Marian x
Simon continues with rehab therapy. He travels twice a week to Fullarton for physio, and has speech therapy at home. We are still waiting for a powered wheelchair, although there is some hope that this might happen soon. I was unable to buy this independently. We have had many ups and downs: a couple of falls, pressure sores, and the inevitable depression. On the upside, Simon's speech is really improved, and he has recently made good progress in physio. This week he walked 6 lengths of the parallel bars in the gym (around 60 metres in total). He has also been cooking 2-3 times per week using a slow cooker and lots of chili!
Simon has rediscovered E-bay and has successfully bid on around a dozen CDs. He has also worked out how to download music again. Music has been a lifebelt for us. We managed to go to a concert two weeks ago. A local band, the Yearlings, were playing in McLaren Vale in an old converted church. It was a bring your own grub arrangement. Simon and I turned up with fish and chips in newspaper - everyone else had delicate platters and canapes!
We have had plenty of rain which is good for our veggies. My spuds are up, and the greens are nearly ready. We have grown some wicked, blow-your-socks-off radishes and some rather pathetic beans. I have a constant battle with pests and insects and can often be found hunting caterpillars by moonlight. I found a tip in an old gardening book which advised placing fake plastic butterflies amongst the brassicas to deter the cabbage white butterfly. I spent several hours manufacturing plastic butterflies from old margarine tubs only to discover that they attract the blighters!
Simon's speech therapist is helping him to learn to use his mobile phone. We are planning to go to Noarlunga next week to buy a phone with a full keyboard so that he can text more easily. If you receive odd messages, you might expect them to be from Simon. Apologies to Aidan who regularly gets phoned by accident being first in the address book. By the way, congrats to Aidan on qualifying for his bus pass.
Skippy is as canny as ever. He has our care assistants wrapped around his little paw persuading them that he hasn't been fed for a week and desperately needs an ear rub. It has been cold here and he is a master at finding the warmest places to sleep; we could patent him as an organic heat seeking device. To his credit, the mice have disappeared (there may have been some RatSak involved).
My sister, Margaret, has been having a battle with skin cancer on her face. She has been very stoic about it, but it is a rotten thing. Last night the two of us went out to dinner together for the first time in years. It was really nice. Inevitably we ended up reminiscing about our complicated upbringing . There are only two people in this world that I have truly hated. The other one was Margaret Thatcher.
Thanks to everyone who has kept in touch through the blog and on email. Again, my apologies for being such a slug with the blog. I know that my family in England have been through some difficult times with the passing of our dear Aunt Jean. We have been thinking of you all.
I pick Greece to win the World Cup - who will bet me a dollar? Am even prepared to double it up on West Ham winning an away fixture next season....
Love Marian x
Wednesday, April 28, 2010
28th April: An independent journey
Today we passed a great milestone. At 9am, Simon went out in the powered wheelchair and travelled a kilometre by himself reaching a cafe on the Main Street of McLaren Vale. It was nerve wracking, but he has done it. We are so grateful to Jeremy from the Royal Society of the Blind who has been training Simon to use the chair and is so inspiring. We are now trying to buy the right powered chair for Simon so that he will be more comfortable and safer. The occupational therapist came to our house today and has promised to help us to find the right equipment. We gave up on government funding for this. I know that some of you were thinking of getting up a fund to help with this, in which case, now is the time.
Have discovered the 'cheap Tuesday' deal at the local video store and scored some cracking movies: The Damned United is superb for anyone who remembers the legendary Brian Clough and understands English football. I was taken back decades and reminded of the comforts and deprivations of those times. We also saw Inglorious Basterds (that is how they spell it). A tad violent for me, but Simon thought it was brilliant. Now he wants to see Avatar (anyone seen that?).
I was interviewed today by a colleague conducting research into Work Integrated Learning. I found myself quickly embroiled in the Humboldt / Newman stuff about what a University is for. Sometimes I swear Tom Bourner is sitting on my shoulder. Hope so.
Love Marian x
Have discovered the 'cheap Tuesday' deal at the local video store and scored some cracking movies: The Damned United is superb for anyone who remembers the legendary Brian Clough and understands English football. I was taken back decades and reminded of the comforts and deprivations of those times. We also saw Inglorious Basterds (that is how they spell it). A tad violent for me, but Simon thought it was brilliant. Now he wants to see Avatar (anyone seen that?).
I was interviewed today by a colleague conducting research into Work Integrated Learning. I found myself quickly embroiled in the Humboldt / Newman stuff about what a University is for. Sometimes I swear Tom Bourner is sitting on my shoulder. Hope so.
Love Marian x
Saturday, April 17, 2010
17th April: Simon is home
Just a quick update today. Simon discharged himself from the hospital yesterday, he could take no more. He is home and happy. The next week is a bit challenging because we have no physio or carer support but I can do some work with him and hope it will be enough to keep him ticking over.
Love Marian x
Love Marian x
Wednesday, April 14, 2010
15th April: A mouse in the house
Simon is still in the rehab hospital and is deeply unhappy there. It is not quite the boot camp that we were promised, just three hours of therapy per week day and very little at weekends. It is terribly boring for him the rest of the time. The highlight of his week was when I sneaked in a cornish pastie. I will take him to Glenelg on Sunday afternoon for a spot of CD shopping, he has compiled a long list of must-haves. We have another public holiday (ANZAC day) on 26th April, and he has resolved to discharge himself from the hospital that weekend. We have stuck it out because the Professor has insisted and we need her support, but enough is enough. Meanwhile, back at the ranch I am besieged by mice. What is Professor Skippy Orlando doing about this? Sleeping. What a slouch. Ironically, the mouse living in the pantry has a real liking for cat biscuits.
Simon's veggie patch is in full bloom - here you can see the 'dwarf' beans after just 14 days. It will be about four weeks before we are eating the produce. I did calculate that this project was costing about $20 per kilo of veg produced, but there's nothing like the taste of home-grown produce. I once had an allotment in Brighton which, despite having only four inches of top soil over chalk, produced an enormous glut each year. I can still remember my colleagues running down the corridor at the sight of me trying to give away surplus marrows.
Have had a conference paper accepted and quite pleased about that. It is local, so no need for travel. Am still thinking about Beijing. I could probably arrange for a carer to be with Simon for a few days but I don't like the idea of being so far apart. Sometimes I wish we were in England, especially now that spring is there and winter will soon be here.
Had a close shave on the road last week. Driving back from the hospital in the dark a roo jumped out in front of me. I swerved and missed him but the girl in the car behind me hit him. He was a big chap. I stopped to assist her, she had a little boy in the back seat and was very upset. The police came, threw a rope around the roo and dragged it off to the side of the road. They just left it there and told us to get on our way. I've resolved not to drive in the dark anymore.
We heard about the UK elections. Simon and I are sending in a request for overseas postal votes. Not sure if we will be in time, but with luck we will send two votes. Wouldn't it be something if we tipped the balance? I voted for the first time in Australia recently. These were state parliament and some commonwealth seats. They use proportional representation and the ballot paper was about two foot long. I can remember as a student having to debate the pros and cons of PR, but I don't remember any academic mentioning the practical problems with very long ballot papers. When asked to rank 47 candidates, eventually you lose count, make mistakes, and your pencil runs out of lead. You can alternatively just tick a box for a 'ticket' - which means that you vote for all of the labor (correct spelling in Australia) or liberal candidates etc. Personally, I don't favour this. It can result in the Harvey Proctor scenario (Basildon under Thatcher). So, if any of you are teaching government and politics these days, you might like to add that observation to your lecture notes.
On an academic note, I want to know if anyone out there has experience of using blogs, wikis, on-line social network sites etc. as sources of research data, and how do you persuade research ethics committees that this is an acceptable form of data collection. Pucker academic references would be much appreciated.
Love Marian x
Thursday, April 1, 2010
1st April: Trapped in hospital
Simon was admitted to a private hospital yesterday for four weeks of intensive rehab. This is intended to give him a much needed boost of physio. It was a hard decision to accept to go back into the hospital environment, but we felt it was for the best. The shock came when we were told that he could not have weekend home leave because our private health insurance company would cut the funding if he was not in his bed by midnight every night! This is just bureaucratic nonsense, but there seems to be no way around it. Simon hates the place and I am very anxious about leaving him there. Ironically, the hospital is just around the corner from our old house in Brighton.
It is a long weekend, and I am told that I can take him out on Friday and Sunday, so I plan to bundle him into the car and drive down to the coast - even if I can just get him out in the fresh air for a few hours it will be a break from the hospital drudge. If any colleagues would like to visit Simon in the evenings he would greatly appreciate it. The hospital is in Hove, and if you email Simon's gmail address I can tell you exactly where to find him.
Skippy is upset because Daddy's away, and has decided to take it out on the female cat across the road again. What did we do to deserve a misogynistic cat?
We have decided against the Beijing trip for the time being. The cost of business class fares was monstrous, and I couldn't really justify that when we need so many other things. I have to prioritise Simon's wheelchair, and would like to get a bed that has a powered back rest so that he can sit up in bed whenever he wants to.
On a brighter note. Simon and I bought a huge raised planter for the back yard, it is just the right height for the wheelchair. I filled it with pea-straw and potting mix, and we sowed a load of veggies earlier in the week. In four weeks time it should be in full swing and ready for Simon's green fingers.
Am managing to survive at work - my boss and colleagues have been very forgiving.
Sorry for the lack of blogs. Time flies - so far this journey has taken nine months. I think we are still gaining ground. The same cannot be said for the Hammers - bring back Billy Bonds I say, I don't care if he's ninety....
Love Marian xx
It is a long weekend, and I am told that I can take him out on Friday and Sunday, so I plan to bundle him into the car and drive down to the coast - even if I can just get him out in the fresh air for a few hours it will be a break from the hospital drudge. If any colleagues would like to visit Simon in the evenings he would greatly appreciate it. The hospital is in Hove, and if you email Simon's gmail address I can tell you exactly where to find him.
Skippy is upset because Daddy's away, and has decided to take it out on the female cat across the road again. What did we do to deserve a misogynistic cat?
We have decided against the Beijing trip for the time being. The cost of business class fares was monstrous, and I couldn't really justify that when we need so many other things. I have to prioritise Simon's wheelchair, and would like to get a bed that has a powered back rest so that he can sit up in bed whenever he wants to.
On a brighter note. Simon and I bought a huge raised planter for the back yard, it is just the right height for the wheelchair. I filled it with pea-straw and potting mix, and we sowed a load of veggies earlier in the week. In four weeks time it should be in full swing and ready for Simon's green fingers.
Am managing to survive at work - my boss and colleagues have been very forgiving.
Sorry for the lack of blogs. Time flies - so far this journey has taken nine months. I think we are still gaining ground. The same cannot be said for the Hammers - bring back Billy Bonds I say, I don't care if he's ninety....
Love Marian xx
Wednesday, March 10, 2010
10th March: Exhausted
We are worn out, wrung out, exhausted. The BIRCH regime requires a lot of travelling (me driving) and doubled effort from Simon. Meanwhile I going to work and trying to close the sale on our house at Brighton. With luck the house will be sold and gone by Monday lunchtime. It will be a great weight off us - we have been carrying $700,000 in mortgage payments for the last four months with interest rates rising each month. I was trained in economics and taught never to be scared of large numbers, but when it is personal like this, it is not so simple. I hope that next week we will climb out of this. Phew!
I think that the Beijing trip is on for June. Anyone care to meet us there?
Marian x
I think that the Beijing trip is on for June. Anyone care to meet us there?
Marian x
Thursday, February 25, 2010
26th February: 'BIRCHed'
It has been some time since the Birch has been used in Australia (at least 50 years), but Simon has been well and truly 'birched' this week. By which I mean that he has been transferred to the Brain Injury Rehabilitation Care in the Home team. This, in itself, is a misnomer since he has to travel approximately 6 hours per week to the Birch gymnasium in Felixstowe. One day per week some therapists see him at our home. It is always a strain transferring between teams, but this one has really stretched us. Simon feels quite intimidated by them because they keep suggesting that he is lucky to have his place on their programme and that if he doesn't come up to scratch in anyway they will throw him off. I don't like that kind of approach, but must hold my temper because we need all the help we can get in this next challenging stage of rehabilitation.
Fortunately, Jeremy, our vision therapist is a wonder and has given Simon a real lift every time he visits us. Today, Simon got to the end of our street, back again and into the house unaided using the powered wheelchair. We are still using the chair that we borrowed from Blake and his family. We have been told again that Simon is on an endless waiting list for the chair that he really needs (he will have to sit in it all day so it must be the right size). I think that I will just have to stump up and buy it. However, in the meantime he is getting safer working with this chair and that is encouraging.
Good news is that Simon has sent a paper for publication and has another under review for an A rated journal (with Matthew GC). I felt so shamed that my own publication record was so meagre by comparison that I dashed out two conference abstracts in one day.
We said goodbye to our care assistant, Tracie, this morning. The funding for her service ran out, now we have another team taking over from tomorrow. It is such a strange way of organising things. We were so happy with Tracie and she knew our routine. Also, she liked coming to see us first thing in the morning - apparently not all clients are pleased to see their Care Assistants and can get quite abusive. Simon and I both wept when she left this morning. I now have the task of training up the new assistant(s) in our morning routine. Hope they like us.
This morning, Professor Skippy Orlando, - the renowned, erudite, and elegant chap that he is - got into a scrap with the girl cat across the road and gave her a hiding! So bad that Sally, her owner, had to take her to the vet to be patched up. This is very embarassing. Skippy, however, does not seem to have any morals and believes that beating up female cats is perfectly acceptable. What to do? I could only apologise and offer to pay the vet bill. Sally wouldn't hear of it which was very kind of her.
Congratulations to Mel on landing an excellent new job. Also to my darling Aunt Dorrie on her birthday (90+). Good on ya, Dorrie.
Love Marian x
Fortunately, Jeremy, our vision therapist is a wonder and has given Simon a real lift every time he visits us. Today, Simon got to the end of our street, back again and into the house unaided using the powered wheelchair. We are still using the chair that we borrowed from Blake and his family. We have been told again that Simon is on an endless waiting list for the chair that he really needs (he will have to sit in it all day so it must be the right size). I think that I will just have to stump up and buy it. However, in the meantime he is getting safer working with this chair and that is encouraging.
Good news is that Simon has sent a paper for publication and has another under review for an A rated journal (with Matthew GC). I felt so shamed that my own publication record was so meagre by comparison that I dashed out two conference abstracts in one day.
We said goodbye to our care assistant, Tracie, this morning. The funding for her service ran out, now we have another team taking over from tomorrow. It is such a strange way of organising things. We were so happy with Tracie and she knew our routine. Also, she liked coming to see us first thing in the morning - apparently not all clients are pleased to see their Care Assistants and can get quite abusive. Simon and I both wept when she left this morning. I now have the task of training up the new assistant(s) in our morning routine. Hope they like us.
This morning, Professor Skippy Orlando, - the renowned, erudite, and elegant chap that he is - got into a scrap with the girl cat across the road and gave her a hiding! So bad that Sally, her owner, had to take her to the vet to be patched up. This is very embarassing. Skippy, however, does not seem to have any morals and believes that beating up female cats is perfectly acceptable. What to do? I could only apologise and offer to pay the vet bill. Sally wouldn't hear of it which was very kind of her.
Congratulations to Mel on landing an excellent new job. Also to my darling Aunt Dorrie on her birthday (90+). Good on ya, Dorrie.
Love Marian x
Wednesday, February 17, 2010
17th February: Simon's graduation
Today Simon graduated from his Rehab course at the Repatriation Hospital. Here you can see him proudly holding the certificate that he was awarded. Everyone was very pleased with the progress that Simon has made - this included taking a couple of steps using a walking stick for the first time.
Meanwhile, I am trying to fix up a trip to Beijing in June. Simon's consultant has agreed that he can travel with me providing we take some sensible precautions. It will be quite an adventure for us both.
Love Marian x
Monday, February 15, 2010
16th February: Peeling spuds
Tomorrow will be Simon's last day with the rehab team at the Repatriation Hospital. They have shared our journey for around five months and it will be sad to leave them. From here we move on to work with the BIRCH (Brain Injury) team that operates out of Hampstead. They are the bees knees, and have an exciting programme planned for Simon. For this he will need to travel twice per week to Felixstowe (about 1.5 hours each way), plus some therapy at home. The need for travelling is so that Simon can use the excellent gymnasium at Felixstowe and we know from past experience that he really needs this equipment to maintain and improve his physical strength. Also, the Royal Society for the Blind has offered us around 7 weeks of intensive therapy to improve Simon's ability to scan his right field of vision. This will help him to read, but also make him a lot safer when out and about in the wheelchair (we did have a fall recently). The RSB therapist, Jeremy, is a real lively chap; Simon and I took to him immediately, he almost bounces with enthusiasm, and the positive attitude that he exudes is just what we need. Jeremy will come to visit Simon at home three times per week, and plans to build up to outdoor training within a couple of weeks. So from here on, Simon has a full schedule of rehabilitation plus commuting to cope with. He is motivated and very determined.
There have been many achievements over the past couple of weeks, especially with reading and writing. Simon has amended a paper that is now ready for publication; today he peeled a potato (in the occ therapy session); and he is racking up around 30kms per week on the exercise bike.
Today we heard from Simon's old school-friend, Stephen Pantlin. He wrote us a really lovely email - both of us were in tears... Great that you two lads are in touch again.
Sorry that I do not get to blog so often these days. Pretty busy now that I am back at work. I think (fingers crossed) that we have sold the house at Brighton. Not the best price, but enough for us to walk away from it. I guess it will take a month or so to settle while the conveyancers and bankers do whatever it is that they do.
Love Marian x
There have been many achievements over the past couple of weeks, especially with reading and writing. Simon has amended a paper that is now ready for publication; today he peeled a potato (in the occ therapy session); and he is racking up around 30kms per week on the exercise bike.
Today we heard from Simon's old school-friend, Stephen Pantlin. He wrote us a really lovely email - both of us were in tears... Great that you two lads are in touch again.
Sorry that I do not get to blog so often these days. Pretty busy now that I am back at work. I think (fingers crossed) that we have sold the house at Brighton. Not the best price, but enough for us to walk away from it. I guess it will take a month or so to settle while the conveyancers and bankers do whatever it is that they do.
Love Marian x
Sunday, February 7, 2010
7th February: An alternative Day on the Green
While most of Adelaide's music lovers rocked up to see Rob Thomas today, Simon and I spent a lazy afternoon at Red Poles listening to 'Baker Suite' a country/folk duo. The setting was exquisite: dinner in the garden under a shady umbrella, and just about the best food I have ever eaten. I have been scouting around for music venues that are accessible with the wheelchair (not many to be found, sadly).
Yesterday, I drove Simon around some of the wineries ending up at Shottesbrooke. Here we discovered that Robyn, the cellar door host, plays in a band called The Yearlings. Simon has four of their CDs. We are looking forward to catching up with their next concert in March.
Simon continues to make progress with his physio work and now regularly clocks up 10kms on the exercise bike. He did achieve 15kms in one session, but this was too much and knocked him out for most of the next day. There is movement returning in his right foot. This did happen before but the movement was involuntary and he was unaware of it. Now, he shouts 'hey hey' whenever his foot moves. This brings me dashing desperately to the rescue only to find him grinning and pointing at his foot!
I am managing to work and get most things done at home for the time being. Things will be easier once we have sold our old house at Brighton. Last week I had a nightmare with the pool cleaners. They phoned to say that they were topping the pool up with water and that I would need to turn the hose off in three hours (a 60km round-trip to turn a tap off). When I arrived, there was water running down the garden path. I found a pipe gushing everywhere, the shed three inches deep in water, and very little water in the pool. The pool cleaner had left the pump switched to 'waste' and it was rapidly emptying the contents of the pool into the shed and beyond. I was so furious that I had to wait and calm down for three hours before I could phone to complain. Fortunately, there was not much left in the shed but I know that there was a bag of cement on the floor - anyone got a jack-hammer?
Simon begins with some new therapists over the next couple of weeks. The BIRCH (Brain Injury Rehabilitation Team) come to meet us tomorrow for initial assessment. They offer therapy in the home. Later in the week we have an assessment by the Royal Institute for the Blind; they are planning some vision therapy for Simon which should help him to scan his field of vision more effectively. We continue to read together slowly. The backgammon is picking up speed (I am still winning - just).
Thanks to everyone for birthday cards and messages. Too old to count them from now on, let's just call them 'golden years'.
Love Marian xx
Yesterday, I drove Simon around some of the wineries ending up at Shottesbrooke. Here we discovered that Robyn, the cellar door host, plays in a band called The Yearlings. Simon has four of their CDs. We are looking forward to catching up with their next concert in March.
Simon continues to make progress with his physio work and now regularly clocks up 10kms on the exercise bike. He did achieve 15kms in one session, but this was too much and knocked him out for most of the next day. There is movement returning in his right foot. This did happen before but the movement was involuntary and he was unaware of it. Now, he shouts 'hey hey' whenever his foot moves. This brings me dashing desperately to the rescue only to find him grinning and pointing at his foot!
I am managing to work and get most things done at home for the time being. Things will be easier once we have sold our old house at Brighton. Last week I had a nightmare with the pool cleaners. They phoned to say that they were topping the pool up with water and that I would need to turn the hose off in three hours (a 60km round-trip to turn a tap off). When I arrived, there was water running down the garden path. I found a pipe gushing everywhere, the shed three inches deep in water, and very little water in the pool. The pool cleaner had left the pump switched to 'waste' and it was rapidly emptying the contents of the pool into the shed and beyond. I was so furious that I had to wait and calm down for three hours before I could phone to complain. Fortunately, there was not much left in the shed but I know that there was a bag of cement on the floor - anyone got a jack-hammer?
Simon begins with some new therapists over the next couple of weeks. The BIRCH (Brain Injury Rehabilitation Team) come to meet us tomorrow for initial assessment. They offer therapy in the home. Later in the week we have an assessment by the Royal Institute for the Blind; they are planning some vision therapy for Simon which should help him to scan his field of vision more effectively. We continue to read together slowly. The backgammon is picking up speed (I am still winning - just).
Thanks to everyone for birthday cards and messages. Too old to count them from now on, let's just call them 'golden years'.
Love Marian xx
Friday, January 29, 2010
29th January: Simon begins reading a novel
The mobile library came through McLaren Vale the other day. I popped in and asked about large print books - they had heaps of them. I scored a Robert B Parker novel 'Shrink Rap', and, knowing that Simon liked this author, I thought he might like to read it with me. This morning, Simon read the first chapter with me out loud. It was four pages, around 500 words. He made only five mistakes in the whole chapter and some of those were to do with American dialogue. We aim to read this whole book by the time the mobile library returns in four week's time. It will be a landmark in Simon's progress.
Meanwhile, Simon continues to gain strength in his right leg mainly through using our exercise bike. This has improved his knee muscles and makes standing and transferring (from the chair to bed or the car) very much easier. Today we went to a shopping centre and managed to do some normal things with only a little difficulty. I have to learn how to carry the shopping and push a wheelchair at the same time. I had piled most of the shopping on Simon's lap, had things hanging off the back of the chair, and very nearly resorted to carrying a box of soap-powder on my head but decided this was too much. There must be a knack to this.
On the way home we popped in to see Justin at Alpha Box and Dice (google them and you will know why we love them). It is just about the smallest, most rustic, most delightful cellar door that I know of. Justin came out and helped Simon to get out of the car, into the building and out again, and never stopped chattering to Simon about wine the whole time. Very different to the supermarket experience. This is the last day of my annual leave and so it will be difficult to do those kinds of trips from here on. I treasure these days together.
Love Marian xx
Meanwhile, Simon continues to gain strength in his right leg mainly through using our exercise bike. This has improved his knee muscles and makes standing and transferring (from the chair to bed or the car) very much easier. Today we went to a shopping centre and managed to do some normal things with only a little difficulty. I have to learn how to carry the shopping and push a wheelchair at the same time. I had piled most of the shopping on Simon's lap, had things hanging off the back of the chair, and very nearly resorted to carrying a box of soap-powder on my head but decided this was too much. There must be a knack to this.
On the way home we popped in to see Justin at Alpha Box and Dice (google them and you will know why we love them). It is just about the smallest, most rustic, most delightful cellar door that I know of. Justin came out and helped Simon to get out of the car, into the building and out again, and never stopped chattering to Simon about wine the whole time. Very different to the supermarket experience. This is the last day of my annual leave and so it will be difficult to do those kinds of trips from here on. I treasure these days together.
Love Marian xx
Tuesday, January 26, 2010
26th January: Australia Day
Australia Day 2010 coincided with my 50th birthday - very nice for the Ozzies to arrange a national holiday for us. We had a splendid day - beginning with presents first thing in the morning. I got a wheelbarrow complete with ribbons and bows. Also a first class bottle of Shiraz with recommended cellaring for up to 18 years. It lasted until 3 o'clock!
The family joined us in the evening for drinks and a Chinese meal. We had the whole restaurant to ourselves apart from a few take-away customers. Finished off with birthday cake and Raina blew the candles out three times. During the evening my sister gave me my Dad's gold medal which was awarded to him the year I was born. A beautiful thing and I will always cherish this.
Now that I am 50 I have decided to wear red shoes!
Love Marian x
Tuesday, January 12, 2010
12th January: Simon's birthday
Simon hit the grand age of forty seven today. I woke him at 7am to open his presents including a lovely Lacost Polo shirt from Shirley sent via the UK. It rained heavily which was very welcome, cooling the place right down. We had a quiet day while I worked on my teaching notes. In the evening we went to the Barn restaurant and had a very nice dinner. Simon had Kangaroo steak, and we both had puddings. While in the restaurant, a lady approached our table and said "Hello Simon". It turned out to be one of Simon's colleagues, Pru from Unisa, she lives nearby and was staying over in the Vale with her family. In a second coincidence it turns out that I bought my first house in Australia from her family! We have promised to keep in touch. A gentle stroll home, then watched the Number One Ladies Detective Agency (the Movie). Great stuff.
Love Marian x
Love Marian x
Sunday, January 10, 2010
11th January: Back to work
Back to work for me today. Not such a bad experience, at least the air-conditioning was good. Met with our new Professor and caught up with some others to sort out timetable business. Then worked on my teaching notes for later this week. The time flew by. Worried about the risk of bush-fire, I got home by 4pm. There was a fire as I approached Noarlunga, but it seemed to be isolated - hope so. The wind has been roaring in from the North and everything is tinder dry. We hope for a storm to break this evening then we will all feel safer, not to mention cooler.
Here is a photo of Simon in his powered chair moving along at a fair click.
Love Marian x
Friday, January 8, 2010
9th January: Feeling hot, hot, hot
We are having another spell of very hot weather, well over 35 degrees. So sorry to hear about the big Freeze in Europe, but maybe some of you will get to swing a few extra days off work.
Simon now has a powered wheelchair which was loaned to us by my student, Blake and his family. Many thanks to Blake, this has been a real Godsend. We are learning to use the chair which is quite intuitive, although potentially lethal in reverse! We have had a couple of runs up to the centre of the village, and enjoyed a nice meal in a restaurant that would have been inaccessible to us before. The learning curve is pretty steep - some hazard presents itself around every ten metres (Asher will know this from having pushed the manual wheelchair many miles during his stay). The main problems are: steep kerbs, potholes, inclines, overhanging branches, hedges, dog-walkers, cars and wheelie-bins parked on the pavements. Apart from that, it's a piece of cake! The chair has a potential range of 50km, although I wouldn't like to chance the battery for that distance.
I have also bought an exercise bike for Simon, he just wheels the chair up to it and pedals. It can also be used as a table-top hand bike. Most days he manages at least a kilometre with the right foot strapped to the pedal. Our rehab in the home service finished on Friday, and Simon returns to the Repat hospital for outpatient therapy from here on. He will probably attend there for two or three afternoons per week starting next Wednesday.
Other news, our house at Brighton is on the market. I had to work like stink to finish off the decorating etc, and finally we have wardrobe doors fitted (pity we don't get to use them). We need to do well on this sale, so fingers crossed.
It is Simon's birthday on 12th January, so I am looking for a nice restaurant to take him to on Tuesday evening. We are also just six months into Simon's recovery, and this feels like another milestone. We are going to set some goals for ourselves over the next few days. First up on my list is to find a holiday destination that is disabled friendly that won't break the bank. Any ideas? I'd love to get Simon into the sea somehow, and know that it is possible - I saw it happening at Benidorm in Spain (a nice peaceful resort these days, by the way).
Regarding Spike. Regrettably, he has had to move out. Our cat, Skippy, couldn't cope with him and so I was having to separate them. This meant Spike spending a lot of time in the laundry which wasn't very nice for him. Spike has moved to Mel and Pen's place around the corner - and they are currently trying to train him. This should be possible because he is only a year old. However, what the RSPCA did not tell us is that he may be crossed with a wild ferret!
Meanwhile, we are having our drive concreted. We expect this to be finished next week and this will mean that Simon can get out of the house safely and down to the level of the garden shed and lower lawn. Getting back into the house is not so straightforward, we need to adapt the ramps again. Am worried that Skippy will leave footprints all over the concrete, or maybe it will just add to the character of our home.
Back to work on Monday. I have an intensive course running for the next two weeks, also looking forward to welcoming one of our new Associate Professors, Greg Fisher. Hope he likes us!
Love Marian x
Simon now has a powered wheelchair which was loaned to us by my student, Blake and his family. Many thanks to Blake, this has been a real Godsend. We are learning to use the chair which is quite intuitive, although potentially lethal in reverse! We have had a couple of runs up to the centre of the village, and enjoyed a nice meal in a restaurant that would have been inaccessible to us before. The learning curve is pretty steep - some hazard presents itself around every ten metres (Asher will know this from having pushed the manual wheelchair many miles during his stay). The main problems are: steep kerbs, potholes, inclines, overhanging branches, hedges, dog-walkers, cars and wheelie-bins parked on the pavements. Apart from that, it's a piece of cake! The chair has a potential range of 50km, although I wouldn't like to chance the battery for that distance.
I have also bought an exercise bike for Simon, he just wheels the chair up to it and pedals. It can also be used as a table-top hand bike. Most days he manages at least a kilometre with the right foot strapped to the pedal. Our rehab in the home service finished on Friday, and Simon returns to the Repat hospital for outpatient therapy from here on. He will probably attend there for two or three afternoons per week starting next Wednesday.
Other news, our house at Brighton is on the market. I had to work like stink to finish off the decorating etc, and finally we have wardrobe doors fitted (pity we don't get to use them). We need to do well on this sale, so fingers crossed.
It is Simon's birthday on 12th January, so I am looking for a nice restaurant to take him to on Tuesday evening. We are also just six months into Simon's recovery, and this feels like another milestone. We are going to set some goals for ourselves over the next few days. First up on my list is to find a holiday destination that is disabled friendly that won't break the bank. Any ideas? I'd love to get Simon into the sea somehow, and know that it is possible - I saw it happening at Benidorm in Spain (a nice peaceful resort these days, by the way).
Regarding Spike. Regrettably, he has had to move out. Our cat, Skippy, couldn't cope with him and so I was having to separate them. This meant Spike spending a lot of time in the laundry which wasn't very nice for him. Spike has moved to Mel and Pen's place around the corner - and they are currently trying to train him. This should be possible because he is only a year old. However, what the RSPCA did not tell us is that he may be crossed with a wild ferret!
Meanwhile, we are having our drive concreted. We expect this to be finished next week and this will mean that Simon can get out of the house safely and down to the level of the garden shed and lower lawn. Getting back into the house is not so straightforward, we need to adapt the ramps again. Am worried that Skippy will leave footprints all over the concrete, or maybe it will just add to the character of our home.
Back to work on Monday. I have an intensive course running for the next two weeks, also looking forward to welcoming one of our new Associate Professors, Greg Fisher. Hope he likes us!
Love Marian x
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