In New York

In New York

Wednesday, 23 December 2015

More Highs than Lows

Roch goes back to the training room 

On 3rd December, Roch held court at one of the sessions on a Study Day Programme for Health Professionals at Princess Alice Hospice. He was there at the invitation of Gill Thomas, (Professional Practice/Therapies Educator). The subject of the study day was ‘Supporting People with a Diagnosis of MND’ and Roch was there to talk about MND from the viewpoint of a Person Living with MND. Many thanks to Gill who made it easy for both of us, ensuring that everything possible was done for Roch’s comfort. Rock's segment of the training day was presented by Gill as a series of questions and answers. Gill had spent time with Roch in advance to talk through his experience and on the day the questions she posed were around those areas of his life with MND which she knew would interest and at the same time instruct her course participants. The session went extremely well and Roch was in fine form - as eloquent and charming as always. I’m sure those present found it very useful. I was relieved that he didn’t run out of ‘puff’ as he says himself. 

Roch with Gill

West London & Middlesex Branch MND Association 20th Anniversary Dinner

With Mandy Garnett, Branch Contact - "A Force of Nature..."

On the evening of 4th December, Roch, Kate, her boyfriend Will and I went along to the West London & Middlesex branch 20th Anniversary Dinner. Chairperson Janis Parks had asked me to give a speech on the night, just before the auction. I spoke about what the Branch has meant for us as the family of a person living with MND. I was flattered and amazed at how well my speech was received and I can certainly record here that the entire night was a resounding success. I was too nervous to eat much, so I can’t really comment on the food (except - Mick Stone did you work out what the flavour of the green sorbet was in the end?) but the company was great, so was the music - and the decorations were very festive. Best of all, I believe quite a lot of money was raised. 

Will, Kate, Me, Roch and Janis Parks (Branch Chairperson)

"And another thing..."

So many people came up to me after my speech and told me that what I had said resonated with them - usually their comments were prefaced by “My husband/wife/partner/brother/sister/uncle…died twenty years ago of MND - or ten years ago - or six years or two years ago” - so many people affected, having gone through what we are going through now. It’s a disease that leaves its mark, even after many years. It creates a feeling of fellowship and understanding, yes - but I notice that amongst carers and relatives, even many years after their loved ones death - the healing must continue, because the scars it leaves are deep. In my speech I mentioned, for the benefit of those present who may not have been aware, that MND comes in different forms and that each person with MND experiences symptoms differently - this is one of the reasons I think, that it is so difficult to find a cure. But although patients’ experiences differ, I believe that the family caregivers’ experience is similar. We all have to watch as our loved one is physically devastated by this cruel disease. Our family is lucky as the progress of MND in Roch has been slow. In its most common form we know it proceeds with a stunning rapidity, which, for family, must be overwhelming to witness. 

I talked about my experience of the first Open Meeting we attended (pretty overwhelming) and contrasted it with the latest, which took place on the Sunday before the dinner (amazing). Both were Christmas gatherings. The dinner and the most recent Christmas Open meeting reinforced for me the feeling of being part of another, bigger family. Like family should, the members of this family welcome us, value us and wish us well and I know they will do whatever is in their power, to make living with MND easier, more bearable - not just for Roch, but for me and the kids too. That evening was one hell of a ‘high’ for me. 

Mother and Daughter

I cannot end this ‘Highs’ and ‘Lows' blogpost without mentioning one other High - at the Christmas Open meeting we met Branch Patron Jeremy Vine. The usual welcome treats were present, including Santa, a massage for me and plenty of delicious cake but the highlight of the evening for me was meeting Jeremy, who brought his talk to a close by wishing Roch a Happy Birthday and introducing the Birthday cake! 

Happy Birthday Roch!

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