Here we invite people living with PMA/PLS to tell their stories.
If you would like to share your experiences of PMA/PLS with others on our website, email us with no more than 300 words, please include a photograph if you wish.
'Life must go on', says Pauline, who was diagnosed in July 2005.
John was diagnosed in 1994. He says the Arizona sun helps with his condition.
Since being diagnosed with MND, Drew has a new best mate - his computer. His main hobby now is listening to mp3 music downloaded on his PC.
Jean has PMA, she says: "As it is five times more common in men than women it makes me one of a rare breed!"
'A diagnosis of MND is never easy, but PLS has given me just that little more time to prepare,' says Brian.
"Life with MND really is worth living," says Mike, who has PMA.
David has PLS. He says: "My wife, children and grandchildren are a continuing source of strength."