One of the people we work with has recently been working with the Motor Neurone Disease Association (MNDA) to capture their story. The MNDA have now published the video and shared Robert’s experience of living with MND:
Robert was born in Leeds and now lives in North West London with his wife Sariet and their young baby. Despite being diagnosed more than a year ago with MND, and having lost use of his limbs and his ability to speak, he is still working as a partner at a law firm.
“I don’t want to be defined by this disease,” says Robert, who was 33 when he was diagnosed. He prefers to focus on the positives; in particular, the birth of his baby daughter Maya Belle, born in January this year. He now uses his Grid Pad Eye to continue working as a lawyer. He goes to his office three days a week and continues to work from home.
The poem you hear in the video was written by Robert as a way of expressing the new perspective living with MND had brought to his life. He wrote ‘Fresh Breath’ a year after he was diagnosed.
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