I finally went to an MND Association meeting in Oxford! I had been reluctant to go to meetings in the past as I was concerned that I may get a distressing view of what’s coming in the future.
But I plucked up courage and went along with Julia.
The meeting started with two talks; one on work the occupational therapists are doing to get wheelchairs to MND patients quickly. In the old days it used to be a 2 year wait! Not really an option with this fast-moving disease. And then it was really tricky to get all the parts together for a suitable wheelchair to satisfy the person’s needs, and because the disease is progressing those needs may have changed by the time the wheelchair arrives. So they set out to work with the three main manufacturers to make a standard Neuro-chair with everything on there the person may need. It has sped up the process, simplified the ordering process and means they have everything to adapt the chair as things change.
The second talk was on biomarkers. These are markers in spinal fluid or blood that could lead to a test for MND / ALS. At present there is no blood test or scan that can show if a person has MND and so it is a process of ruling out other diseases and that takes time. So the researchers have done a series of tests to find biomarkers in the blood and correlate with MND and contrast with healthy individuals and also diseases that mimic MND. The results look promising and they are kicking off a study across two centres to get plenty of data and a reliable test.
And then we got a chance to chat with people living with MND, their families and the volunteers that run the MND association.
It was good to chat to Lesley Ogden, lovely secretary of the local branch of the MNDA , a friendly voice at the end of a phone right after I got the diagnosis in July 17, who also sent me loads of useful info. She is planning an event in South Oxfordshire and it might be in Abingdon. Handy for me.
One guy had very limited mobility and loads of gadgets. When I found out that he was fiercely independent and lived on his own I was seriously humbled. It made my symptoms feel like they were relatively mild in comparison. Apparently he can control his whole house from his tablet; now I have to see that!
Some had the slow variant of MND, PLS, and had had it for over 10 years.
Some needed wheelchairs and some were like me; it had not impacted their legs.
It was great to compare stories and challenges we had faced. One person had a similar onset to me; starting at the top of the body and working down. However it had impacted her arms first and she first noticed it when she had trouble putting the washing out on the line. After several months of no one believing her, she got the diagnosis. She also had difficulty getting her coat on and recounted funny stories of asking strangers on a train to help her put her coat on with varying degree of success. Some people were only too happy to help, while others thought she was a nutter!
And a few people had faith in God – good to see I was not on my own. It will be interesting to see how it has affected their faith.
I met a local guy that had written books of his experience: Michael Wenham: My Donkey Body and I Choose Everything: Embracing Life in the Face of Terminal Illness
We all swapped email addresses and intend to meet up over the next few weeks. It was the first time I’d had a proper chat with people going through the same experience and it was really encouraging.
They are an amazing bunch – so much bravery – and so positive.