Ruth's diary

After a few days holiday in Toronto, I arrived home safe and well. Unable to sleep on the plane, I was looking forward to getting a few hours sleep in the comfort of my own bed. No such luck, my central heating boiler had gone on strike whilst I was away, and trying to track a plumber down during the weekend proved a challenge!

It has been a great privilege to attend the Symposium. It has enabled me to increase my knowledge, particularly in areas of scientific research, and the future impact this may have for people living with MND.

My lasting memory is of the wonderful work going on around the world to improve the lives of people living with MND, and the enthusiasm and commitment shown by the many health and social care professionals involved in supporting people.

I now look forward to feeding back the highlights of the Symposium to the MND Connect team. This will be no easy task!

Yet another early start to the day. The first session focused on clinical trials and trial design. A number of early stage studies were presented, which it is hoped will be taken forward to full-scale clinical trials. I didn’t appreciate how complicated these trials can be, particularly when doctors want to test ‘cocktails’ of trial drugs, aimed at attacking the disease in different ways. The various ways of conducting these trials were discussed, in particular how to stop trials from becoming too complicated, lengthy, and therefore too expensive.

One of the most fascinating talks occurred right at the end of day, with Professor Rothstein describing a new way of obtaining and examining cells from patients, by taking a biopsy from their nasal olfactory tissue. This was described as a simple procedure, but I wonder if Prof Rothstein has tried it himself!

An interesting session this afternoon, explored the benefits of PEG feeding, for people with MND experiencing swallowing difficulties, in relation to improved quality of life.

I did feel sad as I said my good byes to a number of delegates that I have got to know over the last few days’ notably Vicky, a Speech and Language Therapist and Jenny, a Dietitian both from Cambridge in the UK. It was nice to share their company, and also to discuss ways in which they support people.

Now the Symposium is over, I intend to take a few days holiday to explore Toronto, and if the weather improves I will pay a visit to Niagara Falls. I can only hope my navigational skills have improved since my first disastrous trip beyond my hotel! The MND Connect team may start to get a little concerned if I do not turn up for work next week. How long would it be before they send out a search party?

After last nights enjoyable evening at the Gala dinner, I had to be up bright and early this morning to attend the Multi-Disciplinary Professionals meeting.

There were a number of excellent presentations delivered during the course of the morning. Jeannie Boyle from the University of New Mexico’s MDA/ALSA Center, discussed an innovative approach to supporting carers. It was very reassuring to note that carer’s issues are high on the agenda, and that Jeannie and her team excel in meeting their needs. Very inspirational.

Another thought provoking presentation was given by Alison Dick from the Belfast MND Care Centre in the UK. This presentation featured feedback from a survey of patients attending the centre, and highlighted the crucial role the centre plays in meeting the care needs, and supporting people with MND throughout their journey.

After the meeting I spent a little time viewing some of the poster presentations on display. I was particularly interested in the respiratory and nutritional management posters, as the MND Connect team receive a number of enquires, relating to PEG feeding, and Non-Invasive Ventilation (NIV) use.

Other outstanding presentations today focused on the risks and benefits of non-proven treatments, such as vitamins and supplements. Again, an area of interest, as it’s a topic that also generates a number of enquires to MND Connect.

Sadly, tomorrow is the last day of the Symposium - however I look forward to reporting on the many presentations still to come.

I arrived in Toronto on Wednesday evening and despite my best efforts to acclimatise to the 5 hour time difference. I have to say, I failed to beat the overpowering urge to crawl into bed at 9pm that night. By my calculation this would have been 2am UK time, and there was no persuading my body clock otherwise.

I had a little free time before the Symposium got underway, and this was spent sightseeing in Downtown Toronto, on foot no less. Taking in the breathtaking delights of the CN Tower - the Worlds tallest man made building - what an amazing experience. I was also extremely fortunate to experience the warmth and hospitality of the Torontonian’s first hand. As on my way back to base, I got a little lost. The frustrating thing was I could see my hotel. However, a freeway, (with no pedestrian access), now separated me from the comfort, and more importantly the warmth of my hotel room. It was now very cold and windy, my map had blown to pieces in the strong wind, and just when I thought it could not get any worse, it began to snow……..

I am so grateful to the individuals that took the time to piece my map together, and set me on the right track back to my hotel. Thank goodness for those thermals too!

With the Symposium underway, I could not help but be inspired by the presentations from speakers from around the world. I was very impressed with a number of presentations relating to innovative assistive technologies, in particular those relating to spoken and written communication.

Well, it’s the Gala dinner tonight - I can only hope that I will manage to stay awake beyond 9pm this evening.

It is a very busy time for the MND Connect team, and we are currently working hard to deal with the many enquires we receive on a daily basis. I really cannot believe that in less than a week I will be flying out to Toronto.

I am anticipating some pretty chilly weather conditions, so I have been stocking up on warm clothing, including thermals, a woolly hat and a pair of robust boots. I’m very reassured by the fact that my new jacket is fitted with a state of the art avalanche rescue detector system. I think this is a little extreme, but at least I’m prepared for every eventuality!

I am really looking forward to meeting so many people from around the world who share common interests and goals.

I have been studying the Symposium Programme at length, and my only concern is that I will be torn between which sessions to attend. With such a diverse range of presentations, this will be no easy task.

Here’s hoping that the avalanche rescue system, may double as a luggage tracking device to help me locate my baggage on arrival in Toronto - now that’s a good idea. Why hasn’t anyone thought of this before?