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I have been living with Motor Neurone Disease (MND) for 14 years now. I have a rare type which is slower burning. I’m lucky as most people have a fast type which kills 33% within a year and over 50% in 2 years. 

It attacks the nerves in the brain that control movement so muscles no longer work. Leaving people locked in a failing body, unable to move, talk, swallow and eventually breathe. I have lost my speech, swallow is not great, dexterity in fingers poor and stiff legs so I use 4 wheel walker inside and wheelchair or mobility scooter outside BUT I’m still here and take each day as a bonus!

MND Association needs funds in this lockdown land to continue to support people with MND and fund research to find a cure for this devastating disease. 

I’m doing a 2.6 pilates challenge. Normally I go to pilates every Monday morning, at the moment I’m doing 3 classes online with my teacher Helen Pybus. I have been doing pilates with Helen for 10 years now and I believe it has really helped my balance, core strength and mobility. She’s supported me through all these years.

In addition to the 3 classes, this week I’m going to do 26 pilates exercises 26 times with my son Max Burgess as my adjudicator! Pilates movements are done slowly with precision and with my dodgy toe, knee, elbow, shoulder and stiff muscles this is a hard challenge for me.