Mary's diary
Biography
Mary is currently studying part time for a PhD exploring personal illness narratives written by people with MND. Before taking up her present appointment as Research Fellow in the Faculty of Health at Edge Hill University, Lancashire in August 2003, Mary was an MND specialist nurse. For nine years she co-ordinated the post-diagnosis follow up for people with MND throughout Lancashire and South Cumbria.Mary has attended the International Symposium on a number of occasions and regularly co-ordinates one of the many ‘satellite’ meetings for healthcare professionals at the event.
8 December - My last entry
I got home late on Sunday evening, with all of my luggage intact! I took a couple of days off to recover from the jet lag and insomnia. First day back in work on Wednesday found me travelling to Preston to fulfil a promise to report to the MND Care Centre staff about the Symposium. One of the most important aspects of attending the Symposium is disseminating the information to others working in the area who are unable to attend, and this provided an ideal opportunity to do so.
Attending the Symposium has allowed me to renew a number of acquaintances, but more significantly, it has allowed me to discuss my study, in person, with other researchers. This is invaluable, particularly with qualitative research, as it means that I can see where my findings will fit in with those of others. It shows me that I am on the right lines with the direction that my work is taking, which is very reassuring.
Also, listening to presentations calling for more research in areas that are of interest to me is a spur to develop protocols and seek funding for new studies. It might seem early, but I also started the preparations for next year’s multidisciplinary forum meeting by enlisting a few delegates to help generate some abstracts and publicise the meeting.
It has been an enjoyable experience keeping this online diary; it has helped me to focus on what I have got out of each day of the Symposium. I hope that it has given readers a sense of what it’s like to be there.
What now? Well get stuck in to analysing my data and look to submit some abstracts for next year’s Symposium.
Attending the Symposium has allowed me to renew a number of acquaintances, but more significantly, it has allowed me to discuss my study, in person, with other researchers. This is invaluable, particularly with qualitative research, as it means that I can see where my findings will fit in with those of others. It shows me that I am on the right lines with the direction that my work is taking, which is very reassuring.
Also, listening to presentations calling for more research in areas that are of interest to me is a spur to develop protocols and seek funding for new studies. It might seem early, but I also started the preparations for next year’s multidisciplinary forum meeting by enlisting a few delegates to help generate some abstracts and publicise the meeting.
It has been an enjoyable experience keeping this online diary; it has helped me to focus on what I have got out of each day of the Symposium. I hope that it has given readers a sense of what it’s like to be there.
What now? Well get stuck in to analysing my data and look to submit some abstracts for next year’s Symposium.
2 December - Day 3 Symposium Highlights
Last night’s karaoke was just what was needed after such a busy and tiring day. Don’t think I’ve laughed as much for a long time. You certainly see a different side to people when they have a microphone in their hands and one individual ( a highly respected individual at that) had an incredible falsetto in “Staying Alive” by the Bee Gees!
As many delegates are travelling home today, it’s time to say our good byes and swop contact details to make sure we stay in touch. A really important aspect of the meeting for me is the opportunity to talk with other researchers doing qualitative research in MND, to discuss studies, share findings, consider collaborations and vitally, provide support for each other.
The concluding session included reference to Lou Gehrig and an examination of photographs of him to determine when he began showing outward signs of MND- very interesting.
A summary of the highlights of the Symposium followed, and I was delighted to see my presentation was included.
All that’s left now is to start packing up, in readiness for my 6.30 bus to the airport in the morning. I have enjoyed my time at the Symposium, but think I am ready to go home and sleep in my own bed again.
Oops, mustn’t forget to take my poster down… just wondering if it will make it home with me or prefer to travel independently again…
As many delegates are travelling home today, it’s time to say our good byes and swop contact details to make sure we stay in touch. A really important aspect of the meeting for me is the opportunity to talk with other researchers doing qualitative research in MND, to discuss studies, share findings, consider collaborations and vitally, provide support for each other.
The concluding session included reference to Lou Gehrig and an examination of photographs of him to determine when he began showing outward signs of MND- very interesting.
A summary of the highlights of the Symposium followed, and I was delighted to see my presentation was included.
All that’s left now is to start packing up, in readiness for my 6.30 bus to the airport in the morning. I have enjoyed my time at the Symposium, but think I am ready to go home and sleep in my own bed again.
Oops, mustn’t forget to take my poster down… just wondering if it will make it home with me or prefer to travel independently again…
1 December - Day 2 of the Symposium
Wow, what a day! Up early, after only four hors sleep – no, I wasn’t out on the town last night, just suffering from insomnia. The poster session from 8.30am was well received, with a steady trickle of delegates asking questions.
Some interesting presentations today – looking at developing an MND specific equation to accurately predict calorie need, and the need for palliative care services to be provided on the basis of need not diagnosis.
All this provided the build up to my presentation. Butterflies were starting to flutter, but I managed to keep them under control and got through the presentation without too much difficulty.
Still no time to relax though as I then had to chair the multidisciplinary forum meeting from 5.30-7pm, where representatives from three countries described their professional support systems.
Finally it was time to unwind … I’ve already sampled one element of Japanese culture – sake – now it’s time to sample another – karaoke. Watch out Japan … Mary is about to sing!
Some interesting presentations today – looking at developing an MND specific equation to accurately predict calorie need, and the need for palliative care services to be provided on the basis of need not diagnosis.
All this provided the build up to my presentation. Butterflies were starting to flutter, but I managed to keep them under control and got through the presentation without too much difficulty.
Still no time to relax though as I then had to chair the multidisciplinary forum meeting from 5.30-7pm, where representatives from three countries described their professional support systems.
Finally it was time to unwind … I’ve already sampled one element of Japanese culture – sake – now it’s time to sample another – karaoke. Watch out Japan … Mary is about to sing!
30 November - Day 1 of the Symposium
After an uneventful flight I arrived in Japan at 9am on Tuesday. Unfortunately, my poster wasn't so lucky! BA did manage to locate it though and eventually got it to me on Wednesday evening. No day off for me yesterday, I spent the day at the Allied Health Professionals' meeting- a great opportunity to renew old friendships and listen to some very informative presentations.
With the start of the Symposium today, the first thing to do was get the errant poster firmly attached to the display board. That done, I settled into the opening ceremony. Most of the morning sessions were devoted to scientific papers, I think I would have more chance of understanding Japanese than the terminology used in some of the presentations! That said the scientists seemed to understand what was being said.
The afternoon session was much more to my liking. It focused on the needs of informal carers and highlighted the effects of providing care, stressing the need for carer support.
Then there was just time to make a few last minute alterations to my presentation and give a copy of it to the AV staff in readiness for tomorrow afternoon. I've got my poster session at 8.30 in the morning so it's early to bed for me, but it's the Symposium dinner tonight.....maybe I'll stay up a little later then...just to be sociable!
With the start of the Symposium today, the first thing to do was get the errant poster firmly attached to the display board. That done, I settled into the opening ceremony. Most of the morning sessions were devoted to scientific papers, I think I would have more chance of understanding Japanese than the terminology used in some of the presentations! That said the scientists seemed to understand what was being said.
The afternoon session was much more to my liking. It focused on the needs of informal carers and highlighted the effects of providing care, stressing the need for carer support.
Then there was just time to make a few last minute alterations to my presentation and give a copy of it to the AV staff in readiness for tomorrow afternoon. I've got my poster session at 8.30 in the morning so it's early to bed for me, but it's the Symposium dinner tonight.....maybe I'll stay up a little later then...just to be sociable!
20 November - Last minute preparations
I can't believe that the Symposium is due to start in just over a week - where has the time gone? I have been putting the finishing touches to my presentation so that I could e-mail it to the translator. (Some presentations will feature simultaneous translation between English and Japanese.) Trying to be organised, I arranged to collect my poster, only to find that there had been problems with the printer and it hadn't been done! Slight panic ensued, but I eventually managed to get it sorted out with some help from a friend. Best laid plans and all that...
I have been fortunate to attend the Symposium every year since 1995, with the exception of 2004, and have made many friends from around the world who all share an interest in MND and a desire to make a difference to those affected by the disease. I'm really looking forward to seeing them and catching up with their news.
I'm due to fly out on Monday, but before I think about that I really must get on with clearing my desk. Now where is that round receptacle I use for my filing?
I have been fortunate to attend the Symposium every year since 1995, with the exception of 2004, and have made many friends from around the world who all share an interest in MND and a desire to make a difference to those affected by the disease. I'm really looking forward to seeing them and catching up with their news.
I'm due to fly out on Monday, but before I think about that I really must get on with clearing my desk. Now where is that round receptacle I use for my filing?
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