At the age of 52, Simon Brennan was in almost perfect physical condition. He would run the London Marathon twice and prepare for an Iron Man race in Norway last summer by "warming up" with a 70k triathlon. He cycled, played tennis and trained three times a week in a boot camp.
But in October last year, a derivative broker in the city, Simon noticed an almost imperceptible blemish in his speech: his wife Sophia, 51, says she couldn't hear it, but it was clear to him. "It felt very weird," he says. "I couldn't put words out the way I wanted. I thought I sounded like an aging radio DJ. & # 39;
At Christmas he would become anxious and irritable. "Little things like the kids (Freddie, 25, Orla, 23, and Juno, 18) who leave their shoes everywhere would pull him over," says Sophia.
On January 2 this year, he walked into the job he loved and quietly announced that he didn't want to do it anymore.
Unexpected medical condition: Simon Brennan, from North London, was diagnosed with motor neuron disease last year – and is already suffering from the onset
"I noticed that I had something like an extra-physical experience," he says. "I have never had an anxiety attack in my life, but I imagine how it feels. I think I knew at a certain level that I was sick. I just had to get out. & # 39;
Simon initially believed that he was suffering from stress and his boss suggested leave. "I fully expected our doctor to confirm that," he says. & # 39; But he noticed that my face was emotionless, almost as if I had had Botox and wanted to rule out a neurological cause. & # 39;
Nowadays Simon sits with Sophia in their beautiful garden overlooking Hampstead Heath in North London, where he ran and swam and cycled just six months ago, with extraordinary grace and stoicism confronting one of the most devastating diagnoses in medicine .
He was told in May that he has motor neuron disease (MND), a rare and incurable degeneration of the cells and nerves in the brain and spinal cord. Because messages do not reach the muscles, those affected are gradually deprived of their ability to move, speak, swallow and ultimately breathe.
Most people with MND die within five years of the onset of symptoms. But for those with Simon's type of progressive bulbous palsy, the outlook is even more bleak.
Progressive bulbar paresis mainly affects the muscles in the throat, tongue and face and causes problems with speech and swallowing. The average survival at diagnosis is between six months and two years, but the disease goes so fast in Simon that he can follow its progress in almost daily losses.
Precious Moments: Simon – who has an aggressive version of the disease, meaning his speech is already unclear – is pictured here with his wife, Sophia
His speech is unclear and less clear today than a week ago and the muscles in his throat that allowed him to swallow are weaker.
"This disease is now raging through me," he says. "I have the most aggressive type of MND and it seems to turn off faster than average."
It seems unthinkable that Simon can think of other people at a time when his own life is falling apart, but he talks movingly about his plans to raise money to support others with MND.
At the end of June, Simon, his son Freddie, and brothers Mark, 58, and Paul, 56, completed a 270-mile bike ride from Land & End to the family home in Highgate to raise money for My Name & # 39; s Doddie , a charity founded by rugby player Doddie Weir who was diagnosed with MND in 2017.
"I have had a good career and I feel financially at ease," says Simon. "But such a diagnosis can break families; converting a bathroom or buying a special wheelchair costs a lot of money and MND moves so fast that you don't have time to wait for work disability. & # 39;
About 5,000 people in the UK have MND; it can occur at any age, but is more common between 50 and 70 and there are slightly more men than women.
A combination of genetic, environmental and lifestyle factors is believed to be involved, although there is some evidence that lifelong intense physical activity is associated with MND in people with a genetic predisposition.
It is the disease that even doctors fear for themselves and for patients because so little can be done to treat it.
"It is a devastating condition and it is extremely frustrating that we do not yet have more effective treatments," says Dr. Nikhil Sharma, neurologist consultant at the National Hospital for Neurology and Neurosurgery in London.
"There is only one drug we can offer – riluzole – that can delay the course of the condition and give patients a few more months, but MND is a very variable disease and the progression is different for each patient. An area of interest that Dr. Sharma investigates is the role of the gut microbiome (bacteria that live in our colon), which has a very profound effect on our health and well-being.
"MND, Alzheimer's disease and Parkinson's disease are all related to protein deposits that cause an inflammatory response in the brain," Dr. Sharma. "Our research has shown that we can influence the response of those small inflammatory cells by altering the gut microbiome with new bacteria.
"The first study into the relationship between gut bacteria and MND is starting this year and we may have preliminary results two to three years later."
Gender difference: around 5,000 people in the UK have MND; it can occur at any age, but is more common between 50 and 70 and more men than women
No test offers a definitive diagnosis for MND, but based on his symptoms, Simon & # 39; s consultant initially thought he had myasthenia gravis, a curable autoimmune disease that causes chronic fatigue and muscle weakness, especially in the face.
But despite taking medication, Simon noticed more symptoms in mid-April, not less. One day he came in after a walk and said to Sophia: "I smile at people and smile and yawn even if I don't want to. It is really disturbing. & # 39;
In addition to affecting the muscles of the upper body, the condition can also affect the expression of emotions and people can laugh or cry for no apparent reason, a condition called emotional lability.
"We went to the consultant the next day and when Simon said this, his face changed completely," says Sophia. "He arranged a test called EMG (electromyography: where small needles are used to check for nerve response) and warned us to prepare for the worst & # 39 ;. & # 39;
The test confirmed that Simon had motor neuron disease. "We walked away in silence, completely numb with shock," says Sophia. "There are simply no words to describe that kind of destruction."
Because Freddie and Juno were about to take important exams and Orla had just started her dream job in publicity, Simon and Sophia decided to stop the news for a month or so.
WHAT IS MOTOR NEURONE DISEASE?
Motor neuron disease is a rare condition that primarily affects people in the 60s and 70s, but it can affect adults of all ages.
It is caused by a problem with cells in the brain and nerves called motor neurons. These cells gradually stop working. It is not known why this happens.
Having a close family member with motor neuron disease, or a related condition called frontotemporal dementia, can sometimes mean that you are more likely to get it. But in most cases it does not occur in families.
Early symptoms can be weakness in your ankle or leg, such as finding it difficult to walk up; unclear speech, difficulty in swallowing, weak grip and gradual weight loss
If you have these symptoms, you should go to a doctor. They will consider other possible conditions and, if necessary, refer you to a specialist, a neurologist.
If a close relative has motor neuron disease or frontotemporal dementia and you are worried, you may be at risk – they may refer you to a genetic counselor to discuss your risk and any tests
Source: NHS UK
"That was the hardest time of all," says Sophia. "We didn't want to lie to them, but we thought that every day they didn't know was a good day, a normal day. The moment we told them, all normal days would be over. & # 39;
They remained silent until the exam was over and gathered the children home for Father's Day.
"It was the worst day of my life," says Simon. "I asked Freddie to sit next to me and hold my hand because I was nervous about what I was going to tell them."
He staggers and Sophia finishes his sentence, her eyes fill with tears.
"They looked at Simon and they looked at me, and they all started to cry," she says. "We didn't have to say anything. They just knew it. & # 39;
It is likely that Simon will remain mobile because his illness mainly affects the upper body, but he feels it is progressing with "terrifying speed." Swallowing is more difficult and he is sure that he will be fed through a tube at Christmas.
While his illness continues, Simon experiences an unexpected feeling of peace. "I ran around before MND, never thinking that I was pretty good," he says. "Always feel less than I wanted to be. Now I don't have much time to live, I know for sure who I am and I get the most out of every moment. & # 39;
His rare moments of self-pity are beyond the milestones in the lives of his children that he will never see.
One of his lowest moments was watching a couple playing with their grandchildren: & # 39; I cried because I will never be & # 39 ;, he says.
Simon plans to organize a new fundraising next year – his goal is to raise £ 500,000 before he dies. But first there is a family vacation in Dorset.
"The only thing I really want is more time with my beautiful wife and children," he says. "Because in the end it's only about the people you love."
Go to justgiving.com/fundraising/simon-brennan4 to help Simon raise funds to support others with MND.
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