Denial

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It's been described as one of The Few diseases that is still largely a Mystery - and yet claimed hundreds of lives in Britain each year.

Motor neurone disease (MND) sees muscle atrophy, with a loss of nerve cells that control movement, speech and breathing.

There is no effective treatment or cure, and the half of the 1,500 people diagnosed each year die within 24 months.

But now, the largest clinical study in A Generation , led by a team of researchers based in Edinburgh, there is some hope.

It will test potential new treatments for MND, as well as on the search, whether the existing treatments for other conditions that might have some use.

These are the stories of some of the parties involved.

The patient

Alan Gray is thrilled by the prospect of the study.

A manager in the IT with three adult children, Alan was diagnosed with MND in January 2017, he was 54.

The early symptoms were harmless Enough - he held the pruning of the road, as he went, as if his feet had dropped.

Three years on, Alan, you can no longer run.

And his home in Denny, Stirlingshire, has been specially designed for him.

Alan admits The Diagnosis was devastating, But he remains relentlessly upbeat.

"First of all, I saw it all and it is just too overwhelming," he says.

"So you have to come back and say, 'right, where are we Today ? What is The Plan for tomorrow?' and maybe look ahead a little.

"I go to The Gym Three Times a week, I get massage to keep therapy regularly move The Body , follow the physiotherapy management.

"energy is a real problem, because the muscles are weaker, so I have to try and manage my energy every day.

"We do one thing, maybe two things, But nothing more. "

Alan has survived as long as he is not eligible for most clinical studies.

But this new project is Different - and Alan will be a part of it.

"hope is something that is a real positive," he says. "The fact that a study now, we can see something, can we have some hope and strength.

"As participants, we can contribute to the science forward. "

What is the new procedure?

currently, there are only a therapy for MND, that can extend the life for two or three months.

The new clinical trial can be hundreds of people with MND in the UK to take part in tests of possible treatments

While most studies focus on a single drug or a treatment, the MND-Smart-study test several at the same Time .

the patients, the Different treatments will be compared with a single group received a dummy drug called a placebo.

you are more likely to receive active treatment, But the study is also designed to be flexible, so researchers can change the drugs tested, if results.

New drugs are added and drugs are not effective are dropped.

It is an approach that has not been used before in the MND research anywhere in The World .

test new drugs, But also drugs that already have a license for other conditions, such as Alzheimer's disease or anxiety and depression.

the re-use of drugs such as these can dramatically speed up the Time it takes for effective treatments to spreading.

The fundraiser Euan Macdonald is one of the longest living people with MND

The study was developed by people with MND working with clinical trial experts from across the UK, including University College London, the University of Warwick and the Euan Macdonald centre for MND research, the University of Edinburgh.

The Man the centre is named, worked as an investment banker in London, when he was diagnosed with MND in October 2003.

Now, Mr MacDonald is one of the people who have lived the longest with MND, and he has used that the Time , money as well as awareness of the disease.

As Stephen Hawking , and another to survive as we know the long-lasting MND, and he uses a voice to speak Synthesizer.

His enthusiasm for the new project developed by the center that bears his name, is evident, above all, The Hope offered by re-using existing drugs.

He says: "We are all impatient to see the results from the research that to happen.

"There are no guarantees, But the re-use of already in place for other diseases such as cancer.

"what is Crucial is that the drug, already approved as safe, so that The Process is shorter.

"Time Is of The Essence , so anything that can speed up the research process is very welcome. "

, The doctor

For those doctors, nurses and bio-medical researchers, who feel specializes in MND, the disease must be like to be a frustrating goal.

Around 5,000 people with MND in the UK Today - But with long-term survival rates are low, there is a limited window in which to study, why it develops and how it progresses.

the consultant neurologist Dr Suvankar Pal works at the University of Edinburgh, Anne Rowling Regenerative Neurology Clinic, founded by the author J K Rowling in memory of her mother.

Dr. Pal, who is monitoring the MND-Smart-study, well-known, it was a challenge to effective treatments up to now.

"This is partly because The Mechanism by which the cells of The Brain do not work properly, is not fully understood," he says.

"And this condition progresses, very quickly, so that you can actually try to encourage people to studies you participate in, and the following until later stages of the disease is very difficult. "

Dr. Pal says, other studies were also complicated by the fact that too few people are involved, means that it was not possible to obtain meaningful results.

But the new study offers New Hope .

"It has been a lack of progress so far with the discovery of new therapies for motor neurone disease and I think that everything we can do to improve the quality of life and survival of people with MND is a Step Forward for this state," he says.

Making memories

Back in Denny, Alan Gray is sitting at the counter in his kitchen with his wife Beverley.

Alan and Beverley has been the emphasis on the memories that will Last - less than 10 holidays in a year, after Alan's diagnosis.

He says: "I'm pretty strong-willed person. I have a lot of family and friends and support so that all helps.

"But I also say a kind of mental toughness anyway, 'you know, there is no point of just kind of, 'why me?' or any kind of Denial . '

"this is the reality. Thus, we find it to do something positive, to move forward, One Step at a Time . "

motor neurone disease, university of edinburgh, edinburgh

Source of news: bbc.com