Must you share your medical secrets with the person you are about to marry? Xavier Alford wishes he had. In 2007, the filmmaker was all set to wed his fiance, Anna, with whom he already had a two-year-old daughter, when he noticed a peculiar tingling in the big toe of his left foot. Around the same time, he realised he couldnt lift the toeup and his walking became slightly off-kilter. He was getting cramps in his calf muscles, as well as a strange quivering sensation in his lower leg. But Alford kept the symptoms to himself. He married Anna, and they soon had a son.

I just didnt want to go there, remembers Alford, 42, who lives in Bath with his wife and their now teenage children. I felt it would be opening a medical Pandoras box. I didnt Google anything, [but] in my heart of hearts I knew it was potentially quite serious.

The feeling in his leg continued, on and off, and a few years later he noticed tingling in his fingers when trying to sleep. Soon, uncontrollable shaking meant he was unable to hold a camera for too long. He saw his GP, who gave him a real telling off for ignoring the problem.

After a series of tests, Alford was diagnosed with multifocal motor neuropathy (MMN), a super-rare neurological illness related to the more commonGuillain-Barr syndrome, in which the immune system attacks the nerves in Alfords case, spreading through his arms and legs, and slowly paralysing parts of his body. Some unluckysufferers ofGuillain-Barr syndrome developlocked-in syndrome the nightmarish state of being fully conscious but paralysed from the neck down, able to communicate only through his eyes, depicted in the book and film The Diving Bell and the Butterfly. This is unlikely to happen to Alford, but because his condition is so rare, he has no idea just how unlikely.

Alfordentered a period of denial after his diagnosis. That was a horrible walk home, really horrendous. I wanted to try and brush this illness under the carpet. Because in some weird way, I thought it might disappear if I carried on doing that, he recalls.

Eventually, Alford confronted his diagnosis in the only way he knew how by making a film about it. In the new documentary,Locked In: Breaking the Silence, airing on BBC Four tonight, and on the British Film Institute website from today, Alford meets others whose lives have been transformed by the unpredictable condition, and grapples with his oncoming paralysis a fact he has kept largely secret until now.

Currently, he can move around independently, but his arms are weak and hard to control, making it difficult to take the bins out, for example, and it is becoming near-impossible for the filmmaker to hold a camera. As he learns more about his disease, we see the momenthe admits to his wife that he had hadsymptoms for years before he saw a doctor. I kept it to myself, and Im sorry I did that, because I should have definitely been open with you, he tells her.

And what did Anna make of that, I ask now? She just accepted it, she said: Its OK. There was no anger. It was a much bigger thing in my head than it was for her. I dont think shed have suddenly said, Im not marrying you, or, I dont love you any more.

Alford rarely discusses the condition with his children. It was only while making the film that his son, Louis, asked if MMN is fatal (probably not, although it can kill in rare cases), and whether he might inherit it (Alfords children are no more likely than the average person to develop the condition).

The unpredictability of the disease is what makes it most frightening and the suddenness with which a locked-inepisode can strike. In his film, Alford meets Scott, 45, an Australian coach driver living in Britain, who was backpacking around Europe in 2016, seemingly healthy, when he noticed a tingling in his fingers (a common first sign of Guillain-Barr).

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'I felt symptoms of my paralysing illness before getting married - but didn't tell my fiance' - Telegraph.co.uk