Thursday, June 10th 2010

Mark at the ARK!

I’ve had an interesting day today, one that has given me a further opportunity at raising awareness of MND. The roots of all this go way back to last year when Rachel, my Social Care Manager and part of my local hospice team, approached me to see if I would be willing to participate in an MND study day that they intended to run for healthcare professionals. I readily agreed as I have always been keen to help raise awareness of this disease, although normally of course my efforts are channelled through this blog which in itself consumes a lot of my time. For one reason or another it never took place last year and I was beginning to wonder if it ever would, but a few months ago I got the word that it was going to take place in June. The original idea they had for my part was to record me talking about MND but then at a late stage in the organisation Rachel decided that it would be nice if I could actually come along and talk in person. So that is what I did!

The hospice had arranged a modified community transport minibus to come and pick me up at 9 AM which meant poor Ann had to get up extra early to be around my house by 7:15 AM so that I could be washed, dressed and fed before it arrived. Debbie arrived an hour later to help Ann get me downstairs and into the wheelchair, and by the time we were ready to leave Alli had joined my little travel party.

The MND study day was held at the ARK Conference Centre, adjacent to Basingstoke and North Hampshire hospital. The day’s programme ran from 9:20 AM through to 4:30 PM with the day’s events kicking off with a talk by the MNDA Regional Care Development Advisor which gave insights into MND and the role of the MND Association. As part of her talk there was a video focusing on the lives of four different people who have MND. Sadly the end credits revealed that three of these people had lost the fight. This was followed by a talk on challenging symptoms by a consultant in palliative medicine for Sue Ryder Care. After a mid-morning coffee break one of the doctors and consultants in palliative medicine from our own hospice gave a talk on cognitive challenges in MND which suggested that it was far more common than first thought. Before wrapping up for lunch we split up into three large groups for a series of patient and carer perspective workshops. And so for the next hour I was the guest speaker being interviewed and talking about my experiences of living with MND. It was a bit of a struggle talking for so long and I found myself frequently pausing to take a breath before continuing. But apart from that I found the whole experience an enjoyable and rewarding one.

Straight after lunch and for the next hour there were small group discussions and a talk on dealing with difficult decisions and advanced care planning. The final talk of the day, which followed a coffee break, was presented by a clinical psychologist who talked at length about compassion fatigue and the risks for the healthcare professionals.

It had been an interesting day and it was encouraging to see that it had been fully subscribed with over 80 healthcare professionals ranging from GPs and occupational therapists to physiotherapists and speech and language therapists. It felt good to be a part of something that would help educate people dealing with MND. Afterwards Rachel informed me that there had been some very positive feedback on my workshop, so that was nice to hear. For me personally it was also a wonderful opportunity to actually get out of the house again (for only the third time this year).

I would like to say a big thank you to Ann, Debbie and Alli for taking such good care of me today.

Before I sign off just have to mention a short four minute video that was shown at the close of the day’s events. There was no introduction or explanation as to why they were showing it which was strange because it had nothing to do with MND. In fact it was the complete opposite of what it means to have MND… and that of course for me was the message. This lovely feel-good, inspirational and heart-warming video clip had me both smiling throughout and feeling envious that I couldn’t participate. I’m not going to spoil it and say too much but if you want to see something that can bring a smile to your face through the simple actions of this one-man and how he’s brought people of different countries and cultures together then take a look at his video which you can view below. Enjoy!

Mark

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