Polio Australia’s National Program Manager will be blogging and uploading photographs here on a daily basis to bring readers up to date with her attendance at the European Conference: Post-Polio Syndrome – A Challenge of Today and the outcome from meetings she has arranged while in Copenhagen.
Day 9 – Sunday 4 September View photographs
After a late morning start, I wandered all the way up ‘Stroget’, the longest pedestrian shopping street in Copenhagen at 1.1 kms, to Nyhavn. It started off being a lovely day, with blue sky and quite warm but has deteriorated to an overcast afternoon.
I had ‘breakfast’ at around 11.15 am at the Information Centre because they have fabulous hot chocolate and almond croissants, which is what I had. They certainly know how to do pastries here. Mind you, I haven’t been eating that much of them, just doing a lot of drooling. I picked up a banana from a street vender along the way (have to keep up my fruit intake) and popped into a few tourist shops to pick up some souvenirs before I leave tomorrow. You may recall that I mentioned there is no Sunday shopping – except for the first Sunday of each month (today). So, one of the shops I visited was Royal Copenhagen where they had a really clever display of a cat jumping onto the crockery with the appearance of smashed pieces frozen in time.
I bought a little wooden owl for myself at a craft market. By talking to the sculptor, I learned the story behind the owl is that there was a movement to make the owl the ‘national bird’ of Denmark but the swan won out, so those who oppose that decision make and sell owls.
Nyhavn was buzzing with people everywhere: eating, drinking, catching canal tours. And smoking! Apparently 1 in every 4 people smoke, including the Queen. The tour guide on Friday said there was an extra chimney on the royal residence to accommodate all the smoke (I assume that was a joke).
On the way back, I bought a frankfurter from a food van and ate it on a bench in a plaza while listening to a busker in the sunshine. The buskers I’ve heard here are really excellent. There is a lot of street entertainment on the Stroget. I heard an amazing classical number being played by a piano accordionist, and someone else was playing “Ave Maria” on a clarinet. Unusual instruments for those particular melodies, but they were very accomplished musicians.
I continued walking and decided to buy an ice-cream just to see what all the fuss is about. Maybe I picked the wrong shop. It was OK but that’s all. I went back to the fruit vendor and bought something I’d seen earlier, a Spanish ‘doughnut’ peach. They’re funny looking things. I should have taken a photo. If anything, they look more like a bagel, round sides and a dip in the middle top and bottom – no hole, of course.
I finally reached the Town Hall plaza and saw a number of people (tourists) lying on their cases on the dirty paving. Very odd, considering there is a lovely stretch of grass just around the corner. I’m obviously getting too old to understand why you would just flake out in the middle of a paved square. By this stage, my feet were getting really sore and I was quite envious of a young child being carried by her father down the street. I wished it could have been me!
I’m sure there is plenty of Copenhagen I haven’t seen but I’ve given it a good going over on foot. The weather over the past week hasn’t been perfect but not too bad. Now I have to repack up my messy suitcase and try to fit in my new purchases from today. I’ll be glad to get to my cousin’s house to do a load of washing. They don’t have that facility at the hotel I’m staying at, nor have I noticed any laundromats. So, goodbye to Copenhagen. I’ve had a very instructive (conference), interesting (networking) and pleasant (touring) stay.
Day 8 – Saturday 3 September View photographs
I met Joan Headley from Post-Polio Health International at the Ny Carlsberg Glyptotek Museum today so I could take photos of the famous 1403 – 1365 BC Egyptian stele of a man with polio that is housed there. We had a cuppa in the conservatory before taking a train to a modern art museum called Louisiana which is located on the coast about 30 minutes out of Copenhagen. They have a free bicycle ‘taxi’ to take you to and from the museum. We saw a few other polio survivors from the conference who were also taking in the sights.
I may have already mentioned how many cyclists there are in Copenhagen. Joan and I were both surprised that helmets don’t seem to be mandatory here as they are in Australia and the USA. It probably has quite a bit to do with the fact that there are dedicated bike paths between the footpath and the road. It would still be interesting to know how many bike-related head injuries they have here.
After wandering around all day, I just picked up a salad and some water from one of the convenience stores at Central Station and headed back to the hotel to sort through my conference paperwork and get on with this blog. Speaking of water, it’s quite ‘limey’ here. The droplets leave a white, filmy deposit after having a shower. Not very nice to drink straight from the tap, that’s for sure. Maybe that’s why the local Carlsberg beer is so popular?
Tomorrow is my last day in Copenhagen before I head off to The Netherlands to visit my cousins for a week. So I will be putting band aids on my poor, blistered feet and making my way to the much photographed Nyhavn area in order to bring you a few final impressions of this lovely city before signing off.
Day 7 – Friday 2 September View photographs
The last day of the conference! How quickly the time has gone. It’s nearly two years in the planning for both the organisers and the attendees, and then it’s over. This morning we only had two sessions where polio survivors were separated from the health professionals. I don’t fall into either of those categories but as a community development professional, I chose to hang out with my ‘community’.
We were treated to information on orthosis management and information on the latest, light weight carbon orthoses. The crowd had been thinning with each successive morning so there weren’t nearly as many people attending this session as there might have been on Day 1 or 2, even though it is a major factor for so many polio survivors. However, we already covered the issues with fatigue, so no surprises there.
The combined afternoon sessions were getting down to the nitty gritty of clinical models, research factors including “The value of investigating patient perspectives”. Well, OF COURSE! I suspect this was aimed at the health professionals but, in all honesty, they would have been preaching to the converted. All the health professionals who participated in the conference are already on board with this concept. Now we just have to figure out how to take the message to the wider audience. It was gratifying to note the number of eminent and well published medical professionals present, so it’s not that the information isn’t actually available, it’s just that we need to be constantly pushing our respective health professionals to read up on it! (Talk about fatiguing!!)
Dr Jan Lexell from Skane University Hospital in Sweden talked about the interdisciplinary teamwork being carried out at his PPS clinic. They have a team consisting of a Physician, Nurse, Occupation and Physical Therapists, Social Worker and Psychologist. I can only assume they refer to respiratory specialists, orthotists, speech pathologists, and dieticians who are also important members of the late effects of polio management ‘team’. Both Sweden and Denmark (maybe other Scandinavian countries as well?) are funded to provide PPS clinics. I asked Dr Lexell if he believed working with polio patients differed from rehabilitation work with other patients with physical disabilities, i.e. stroke, etc. He replied that it was important to have specific knowledge/experience of the late effects of polio. From an economic perspective, health funding in Australia is always being stretched to cover as broad a base as possible. The consequence of this is the ‘one stop shop’ model where what is offered is a generic and mediocre clinical services with no specific expertise. This is clearly not serving the needs of Australia’s polio survivors.
The last session focussed on the “Cost Effectiveness” of providing services for polio survivors and the need for more research in this area.
There were so many (mostly good) sessions packed in to this conference, it was really difficult to take it all in. The presentations will be uploaded to EPU’s website so at least they can be digested a bit more thoroughly. My feedback included the fact that there were no actual workshop sessions whereby people could break into smaller groups to brainstorm ideas and exchange specific information. Of course, a lot of networking was done informally during the breaks but people did naturally tend to gravitate to those with whom they were more familiar. I would have liked the opportunity to sit around a table with around 10 people, both polio survivors and medical professionals, to brainstorm things like the best way to raise awareness amongst the medical professions, or whatever. This would have enabled people to share their own considerable knowledge and to network with people they may not have met otherwise. There were 350 people, after all! It was also a long time to sit and listen to people presenting 4 PowerPoint presentations in a row without being able to have a bit of a stretch in between, as the chairs were typical of conference venues – uncomfortable, with no arm rests! I was also talking to the husband of one of the polio survivors who felt that the needs of family members/carers had been totally unrepresented. However, we live and learn, and most of us left feeling like we had been part of something special and unifying.
The EPU is anticipating having another European conference in 2 years. Polio Australia is also considering holding a conference in Sydney in around 2014, and would seek to include the Asia and South Pacific regions. Many of the European participants thought an Australian conference would be a great opportunity to visit our country.
After the conference, some of the delegates went on a sightseeing tour. The weather was fine and sunny and we were all in good spirits. I finally got to see The Little Mermaid from the front. I also met a young German man, Rudi Vallaster. I hadn’t noticed Rudi at the conference so when I saw him on the bus, I was curious about where he had contracted polio. Rudi told me that he had vaccine-associated paralytic poliomyelitis (VAAP) from his third dose of the oral polio vaccine (OPV) in 1976 at the age of 2. The risk of this happening is 1 case per 750,000 but considering the number of children who were being vaccinated, there are obviously a number of other younger polio survivors in the Western world who contracted VAAP. This is a polio group which we don’t often consider.
Some of the Aussie and New Zealand contingent went out for a final meal and, lo and behold, we were caught up in the midst of the Danish Prime Minister’s election campaigning. Lars Løkke Rasmussen was out and about interviewing the people, complete with cameras and minders all over the place. Both John Tierney (Polio Australia’s National Patron) and JB Munro (Post Polio Support Society New Zealand) are ex politicians, and they were quick to grab a hand shake. Unfortunately for Rasmussen, there were no votes to be had by talking to us, so he quickly moved on. The elections take place on 15th September and there are billboards up everywhere. It’s amazing how young the majority of candidates are. There are also a larger than average number of women candidates, mainly due to the socialist policies around free childcare. You go girls!
Day 6 – Thursday 1 September View photographs
The clouds parted today and the sun was very welcome for the whole 10 minutes I had in it! Conferences like this are a mixed blessing – great information but incredibly tiring. I apologise in advance for not having taken many photos today but my camera doesn’t work very well in darkened rooms with PowerPoint presentations. There has been a professional photographer wandering around taking lots of photos of the groups and presentations which will be uploaded to PTU’s website in the coming weeks. They’d have to be better than anything I could do.
I gave my presentation today, hot on the heels of Ramesh Ferris. Ramesh is a real showman and had the audience eating out of his hands. A tough act to follow, I can tell you. My presentation was on Australia’s Health and Wellness Retreats, and when I’d finished, I was approached by the National Vice President of Italy’s Associazione Interregionale Disabili Motori onlus who wanted a copy of my presentation and anything else I could provide on the Retreats, and one Danish woman was very interested in attending our next Retreat in Queensland. Over dinner, Joan Toone from PPASS was also talking about organising a Retreat in British Columbia, Canada. It was very confirming that other organisations thought the Retreat format was worth exploring in their own countries.
It was a big day, with 4 x 15 min (technically) sessions from 9.00 – 10.00 am, then another 4 between 10.30 am – 12.00 pm, another 4 between 1.00 – 2.30 pm, and a final 4 between 3.00 – 4.30 pm! Obviously there are too many to list in this blog, but the program can be downloaded from the Copenhagen Conference page. It was quite ironic that one of the early afternoon sessions was on “Fatigue – Symptoms and Management”. I could see that many of the participants were taking the recommendation of ‘napping’ to heart . . .
I was very interested in a presentation by Dr Lise Kay, a Urologist at the PTU, who talked about ‘Voiding and bowel problems’. This is not a subject that people really like to talk about, even though it can have such a large impact on their lifestyle. Lise said that people with post-polio syndrome have a higher risk of experiencing incontinence than others due to nerve and muscle function problems. Lise believes that there are many management strategies that can be implemented to help relieve these symptoms and people should see their doctor if symptoms have arisen within the last 1-2 years.
One of the wonderful services they have at the Conference is a booth full of interpreters who are turning the English presentations into French, German, Danish and Italian. I’ve never actually seen this in action but it works very well in the European context. People are provided with a headset unit from which they can just select their specific language channel for almost instant translation.
Many of the proceedings are also being filmed by The Informed Scientist and will appear on their website in the coming weeks. This site has free congress lectures on a number of interesting topics. They provide their services at very low cost and get their money through advertising sponsorship. I wonder what I’m going to look like on film . . .
Wait no longer – here is a direct link to Mary-ann’s Copenhagen presentation and you can access a selection of Copenhagen presentations from this page.
Post-Polio Health International’s Brian Tiburze has been diligently manning an information table over the past couple of days, promoting PHI and their new(ish) website Polio Place. If you haven’t looked at this website yet, do yourself a favour!
So tomorrow is the final day, after which we’ll all leave with our heads bursting with information which will take the next few weeks to process. But right now, it’s time for bed!
Day 5 – Wednesday 31 August View photographs
Day 1 of the Conference was highly charged with 350 polio survivors, their families, and health professionals all gathered to discuss Post-Polio Syndrome (PPS). I met people I had only known in cyberspace like Joan Toone, President of Post Polio Awareness and Support Society of British Columbia (PPASS BC), Canada, and Johan Bijttebier from the European Polio Union (EPU), as well as old friends like Joan Headley from Post-Polio Health International, Ramesh Ferris (Cycle to Walk for polio eradication), and Niels Frandsen (The Epidemic film).
The proceedings commenced with a welcome from the respective Presidents of the PTU and the EPU, followed by musical entertainment from a young local performer and polio survivor, originally from Afghanistan. Then we had an update from Rebecca Martin from the World Health Organisation on the progress of the eradication of polio; Rotary’s story behind the polio eradication program; and an overview of PPS by Frans Nollet, MD.
There was also a large display of orthotics equipment, some of which I hadn’t seen before like the wrist and neck supports. Blaise Doran, Coordinator of Polio Service Victoria, was there checking out the latest products for his clinic. I took a photo of a very stylish pair of built-up boots one of the participants was wearing.
After lunch, the participants were split into two streams: polio survivors and health professionals. Although much of the information being presented was the same subject matter, it was targeted to the particular audience. The topic of most interest to me was on the research being done in Sweden by Dr Kristian Borg with Intravenous Immunoglobulin (IvIg). Polio survivor, Esther Boserup spoke about her personal experience with the IvIg treatment and how it improved her general condition and dramatically improved her quality of life. This was echoed by a few of the other polio survivors who had also taken part in this treatment trial.
The treatment consists of 900ml of immunoglobulin drip-fed intravenously over a 4 hour period, 3 days in a row. In the following 2 weeks, Esther reported that her mental and physical tiredness decreased considerably and the heavy ‘fog’ in her head decreased. She said her pain ceased and the muscles became stronger and responded better to exercise. The effects of this treatment lasted for approximately one year before dropping off. Two years later, Esther says she is back to where she started, but is about to have another treatment soon.
The IvIg treatment is still in the experimental stage, is very expensive and not available to everyone. Dr Borg also explained that 1/3 of people responded to the treatment very well, 1/3 only marginally, and 1/3 had negative reactions. However, he is now able to identify and treat those polio patients who fall into the first 1/3 category. This has very exciting potential for many polio survivors, if only we could cut through the red tape.
At the end of the day the delegates left the conference venue and reconvened at the City Hall for a Reception and a serve of Copenhagen’s famous pancakes. I can attest to the fact that they were delicious!
Day 4 – Tuesday 30 August View photographs
Today I was off for a meeting at the The Danish society of Polio and Accident Victims (PTU). I was joined by fellow Australians Dr Nigel Quadros (Rehabilitation Specialist), Dr John Tierney (Polio Australia’s National Patron) and Pam Tierney (John’s wife). Our hosts were Britta Gnutzmann Quistgaard, the Head of PTU’s Rehabilitation Centre, and Lorne Larsen, Deputy Manager and Physiotherapist.
The PTU has been going for more than 60 years and “works for equal conditions and increased quality of life for the more than 100,000 Danish people who suffer from serious injuries after an accident or a disease”. Britta was saying that of the 1300 people accessing their rehabilitation services, more than 850 are polio survivors. The other groups targetted are people who have been injured in an accident, people with spinal cord injuries, and whiplash injury.
The Rehabilitation Centre employs 60 people made up of speciality doctors, psychologists, social workers, physiotherapists, occupational therapists, dieticians, orthopaedic engineers (orthotists), and swimming teachers. In addition to these multidisciplinary services, the PTU has a wonderful hydrotherapy pool, does vehicle modifications, and has its own driving school tailored for people with a disability.
Another impressive service is the opportunity for an intensive 3 week rehabilitation stay in the PTU’s specially equipped apartments. This service is quite unique in Europe and is now being offered at a cost to people from other countries.
The PTU has approximately 6,000 members made up of people with disabilities and their family members, who pay 250 DKK (approx. AU$50) per year for membership. This membership entitles them to a range of services including: counselling, information/bimonthly magazine, advocacy, seminars and activities, and the use of a holiday house.
Britta is now juggling the services and space through a major renovation of the facility which should be completed in May 2012. This will give them much more new space and a more effective use of the existing areas.
We were all very impressed with the work of the PTU and take away many ideas for the type of services we would like to provide for polio survivors in Australia.
Day 3 – Monday 29 August View photographs
I would like to think that I will be rewarded for doing all this walking by losing at least 2 kg before I get back to Australia. Although I don’t think it helps that I had a hearty (and healthy) breakfast and lunch and hot chocolate (not so healthy) throughout the day . . . Have to keep my energy up! This morning was wet, wet, wet and the afternoon has been so windy, it was difficult to walk down the street. It’s not surprising that the Danes are harnessing power using wind turbines. All I can say is that I’m glad I’m here in ‘summer’!
It’s very easy to get around Copenhagen. Virtually everyone speaks English as the lingua franca, which is handy for me and makes being a tourist pretty much stress-free. Although I suspect the locals might think most native English speakers are American as I keep being instructed to “have a nice day”. Or maybe they’re just being polite. As a matter of fact, the only less than polite people I’ve encountered have been fellow tourists. Generally speaking, the Danes are a handsome and healthy looking people. Must be the genetic culmination of all that blond hair, high cheek bones, and bicycle riding . . .
On my canal boat tour yesterday, one of the ‘spires’ I saw was the crowning glory of ‘Our Saviour’s Church’ which has an external spiral staircase that you can climb up for a bird’s eye view of Copenhagen. So after my hearty breakfast, I decided I was up for a bit of climbing and started walking towards the church. On the way, quite by accident, I found myself walking through a lovely garden area which I discovered were the grounds of The Royal Library. As with all old buildings, there are very few concessions made for people with physical disabilities, however, a couple of steeply pitched ramps had been installed over the steps. I suspect they would be more practical for delivering goods than for wheelchairs.
When I arrived at Our Saviour’s Church, the weather was getting pretty blustery so climbing around the outside was ‘challenging’, to say the least. The inside staircase petered out to become a vertical ladder towards the top, and then you were out in the elements and all its fury. I was thinking I should have had a water proof camera but the photos came out relatively clearly. Surely I deserved a hot chocolate after that!
Walking back, I came across a shopping complex which alluded to The Louvre in Paris, with these glass pyramids out the front. Once again, I was struck by the fabulous architectural detail evident in so many of the buildings. They just don’t make them like that anymore. As I was exploring the supermarket inside, I was intrigued by their wheeled shopping baskets, which I thought was a great idea. They also had shopping trolleys for larger loads but I’ve never seen a shopping basket on wheels before. How often have you taken a basket for a limited number of items and found it hard to manage? This is the solution!
The Conference starts on Wednesday and I’m looking forward to a meeting at the PTU (The Danish Society of Polio and Accident Victims) tomorrow afternoon, so I better make the most of tomorrow morning’s sightseeing!
Day 2 – Sunday 28 August (Afternoon) View photographs
Just to make sure I didn’t sleep the afternoon away, the hotel cleaners did a fine job of slamming every door and making as much noise as possible until I realised it would probably be quieter outside. And when I did venture out, I was delighted to see that there are no shops open on Sunday (apart from cafes and convenience stores). People must actually socialise or do something equally as spiritually enriching. There was definitely plenty to see and do. I walked around for hours taking in the amazing juxtaposition of the old and the new. Living in a young country like Australia instils in you a healthy dose of awe for anything over 200 years old. And there are so many buildings that are, all nestled in amongst the spanky new buildings ’cause you can’t stop progress!
One thing I particularly noticed is that the Danes love their pointy spires. There are oodles of them whichever way you turn. One spire is actually made up of the entwined tails of 4 dragons. That’s another thing about the architecture; there is a lot of ornamentation, often related to mythical creatures. Very Hans Christian Anderson. Another thing I noticed when walking alongside one of the canals, was the cobbled walkways, because I was getting quite concerned that I might end up twisting an ankle. There were two narrow, flat paths set into the cobblestones and when people were approaching each other from opposite directions, it became a battle of wills to see which one would veer off the ‘safe’ path to make way for the other. Also, there don’t seem to be as many dogs (or their deposits) as some places in Europe.
As my feet started to protest, I found a boat tour that went around the canals. Of course, we passed the Little Mermaid, which is just that – ‘Little’. The guide said that this statue was donated to the city by a popular beer brewer and was actually modelled on his wife, a ballet dancer.
I ended my day in a plaza, watching some street entertainment before finding a café and having a ‘traditional’ hamburger, which tasted just like home!
You will notice that the photos aren’t quite as descriptive as they might be if I was more inclined to do more historical research. More ‘ambient’ than ‘instructive’.
Day 2 – Sunday 28 August 2011 (Morning) View photographs
That 11+ hour stretch with SAS Airlines wasn’t nearly as comfortable as the plane was absolutely full. I must confess to being a bit surprised that so many Danes would holiday in Thailand, but there you go. Landed at 6.30 am local time to an overcast and drizzly 14 degrees morning. Very relaxed at the airport – no immigration forms to fill out or anything. I was out in no time and taxi-ing my way to the “Wakeup Copenhagen” budget hotel. Last week when I realised I was going to be arriving so early, I contacted the hotel to see if I could pay for half a day or something to get early check-in – the usual time being 3.00 pm. Unfortunately, I had to pay for the full (and more expensive) Saturday night, but it was worth it just to be able to check in to the hotel, have a shower and get myself organised, as I’ll be here for a week. I’m looking longingly over at the bed in my tiny room but figure I should get started on the blog. So after this, I’ll have a bit of rest before getting up to explore what’s in the local vicinity. Apparently, I’m quite close to the centre of things, but all I can see from my window is a very active rail yard. Stay tuned . . .
Day 1 – Saturday 27 August 2011 View photographs
Well, after a delayed start in Melbourne, I’ve completed the 9½ hours to Bangkok on Thai Airlines and have a 3 hour wait at the hot and steamy airport. It’s raining cats and dogs and mice and chickens outside. I’ll have a 10 hour layby at Bangkok Airport on the way back, so will have plenty of time to explore it further then. I’m pretty tired already, and that was the shorter leg! Fortunately, the plane was only half full and I had a whole row of 3 seats to myself – luxury. I immediately pretended to be in Business Class and stretched out the full length. The only problem was the crick in my neck from twisting around to watch a movie. I wonder if I’ll be having to find a good Osteopath in Copenhagen . . .