Feature: Ned wants fellow MND sufferers to have chance to live their lives

Ned and Heather Cullen with their six-year-old son Rory EMN-140109-165751001
Ned and Heather Cullen with their six-year-old son Rory EMN-140109-165751001
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A man living with Motor Neurone Disease has followed in the footsteps of celebrities like David Beckham and Stephen Hawking by taking part in the ice bucket challenge.

The craze has swept the internet over the last few weeks, which has seen people getting drenched in icy water, to raise money and awareness of motor neurone disease and amyotrophic lateral sclerosis (ALS).

Motor neurone disease suffered Ned Cullen, from Stamford, does the Ice Bucket Challenge with his carers to raise money for the Motor Neurone Disease Association. EMN-140109-155346001

Motor neurone disease suffered Ned Cullen, from Stamford, does the Ice Bucket Challenge with his carers to raise money for the Motor Neurone Disease Association. EMN-140109-155346001

But for Ned Cullen, his challenge had particular importance. Ned, 44, was diagnosed with MND 11 years ago, and during that time he and his wife Heather and six-year-old son Rory have run a gauntlet of emotions, from initially coming to terms with the diagnosis, to understanding what the condition meant for Ned, to accepting the disease’s limitations, helping to raise more than £38,500 for the MND Association, and challenging the limitations of the care system nationwide as a result.

He spends most days in bed, connected to a ventilator, and communicates with the help of an E-Tran communication board, which consists of a rectangular Perspex screen with all of the letters from the alphabet arranged in colour groups on separate parts of the board. Heather or his carers ask him a question and then watch where his eyes focus on the board, spelling out each word with impressive speed and ease, further aiding Ned’s ability to live his life as fully as possible in the circumstances, and highlighting just how important effective communication is in order to maintain a level of independence and control.

Ned credits his current care team as a ‘gold plated solution’ for him. His level of confidence in them, and trust, enables him to do more in his life, despite the debilitating effect that MND has had on his body. However, Ned and Heather expressed their frustration at the fact that it has taken 11 years to get to their current situation, whereby they now have the best carers for Ned, helping him to live a better life, at home.

Ned explained: “If other people with MND aren’t as fortunate as us, or as determined, then their lives may not seem as bright as mine. My GP at the Sheepmarket Surgery has been wonderful, and we have a great support network which other areas’ medical teams should aspire to.”

Motor neurone disease suffered Ned Cullen, from Stamford, does the Ice Bucket Challenge with his carers to raise money for the Motor Neurone Disease Association. EMN-140109-155356001

Motor neurone disease suffered Ned Cullen, from Stamford, does the Ice Bucket Challenge with his carers to raise money for the Motor Neurone Disease Association. EMN-140109-155356001

Heather added: “Our GP is always very proactive and involved in Ned’s care plan, but sadly this is not always the case nationwide. Also, many people who are diagnosed with MND have a limited amount of time. The disease turns your life upside down. The physical effects are rapid and therefore require a rapid response. Unfortunately, many people with MND die without having the right care and not having a suitable wheelchair or other equipment due to the length of time they have to wait.”

As a result of the couple’s persistence in obtaining a more suitable wheelchair, Ned has been able to get out and about more, picking up Rory from school on a number of occasions.

Heather explained: “Getting the right wheelchair at the right time in the timeline of deteriorating symptoms of MND is crucial, but the time it takes is just too long. Our physiotherapist told us about the moulded wheelchair, which fits Ned better and suits his current state. Having the right wheelchair at the right time helps hugely in day-to-day life. His current chair, combined with the right care team, has enabled Ned to go out more, which in turn helps him stay positive. For example, although it takes two hours to get Ned out of bed, dressed and ready to go in the car, he has now been able to escape the confines of his bedroom, and also crucially, he is able to go out without me, because of the chair, and because of his trust in his care team to look after him and to be able to drive our specially adapted car.”

Ned’s care team now consists of five carers who come into the Cullen’s home in Queen’s Walk, Stamford, to help with everything Ned needs, plus Heather, who, although she says she doesn’t see herself as a carer, is still his main caregiver.

Ned has a neurological physiotherapist who comes twice a week to exercise his respiratory system and ensure all his limbs and joints are moved, now that his muscles have wasted away. Heather was keen to highlight that people with MND become involved with so many different health and social care professionals and that it is not only confusing, but also extremely daunting when you are trying to cope with the emotions of just being handed what is, in effect, a death sentence.

She says: “There didn’t seem to be any co-ordination. It all just seemed confusing and chaotic! We found that we were repeating ourselves constantly to different people who, ironically, all worked for the same organisation. Also, during our ‘MND journey’, we have encountered so much ignorance and lack of knowledge about the disease amongst people who we thought would know more.”

These are some of the reasons the Cullens have wanted to get involved in fundraising. The MNDA still needs as much funding as possible from local groups such as the one in Stamford. Ned has made a point of requesting that the money raised to date be split evenly between funding research into the disease and funding specialist equipment.

This funding is especially important due in part to the fact that there is insufficient finance coming from central government and pharmaceutical companies to fund research into the causes of the disease, which is partly due to the fact that there are only ever about 5,000 people in the UK with MND at any one time. Sadly, more than half of those diagnosed with the condition die within 14 months, and the majority do not live for more than five years, meaning those affected by the disease are not around long enough to make a big enough impact on the push for more research funds.

Heather is keen to impress on all those involved in decision-making regarding funding for research into the causes of, and finding a cure for, MND, should be working harder to “assist sufferers to live”.

She explained: “Ned wants to live. He can choose not to by being taken off the ventilator, but he chooses to live because he still has control over his life. He is doing so well because of our own sheer determination to ensure that his support network is the best it can be. However, many people with MND are struggling within a network of confusion, lack of direction, delay and poor funding. Different areas are better at diagnosing the disease, and dealing with the effects of the condition, than others. I would like to see the system make it easier for sufferers to live, but I don’t think enough is being done to make it easier to live, and that needs to be improved.”

This is the thought process behind the MND Association’s two current campaigns; one is the Red Flags system, and the other is the Charter. The Red Flags idea is to raise awareness with GPs of the main signs of MND in order to reduce the time it takes to make a diagnosis, with the aim of getting earlier referral to specialists and therefore quicker access to care and support, as well as increasing the window of opportunity to research into, and better understand, MND. The Charter consists of a five point plan, to ensure the patient gets the right care, at the right place, at the right time, and aims to reverse the current system whereby there is an unacceptable low level of awareness and understanding of MND sufferers’ needs, which in turn contributes to poor standards of care.

Ned explained that the system is still fraught with communication issues, meaning the services received by sufferers vary wildly according to where they live, but perhaps perversely he feels lucky that he was diagnosed at the relatively early age of 33, because he was working as a Harrier pilot based at RAF Cottesmore at the time. He believes the nature of his job meant that the early signs of MND, which often include twitching, weakening muscles and slurred speech, were picked up fairly quickly. However, it was Ned who first diagnosed himself with the disease, after looking up the symptoms on the internet and connecting what was happening to him to the illness. Despite this, he decided to go ahead with a four month tour of Iraq with the RAF, but upon returning went to see his GP, who immediately referred him to a neurologist at Addenbrookes hospital in Cambridge, where he had five days’ worth of tests to confirm that he had MND. The Cullens then read the information package, which covered every stage of the disease, from diagnosis to death, as they wanted to be prepared for what was to come.

In the first year after Ned was diagnosed, the couple embarked on ticking off a list of things they wanted to do before the effects of the disease took hold, including beach holidays and trips to Scotland.

Soon after the first year passed after his diagnosis, Ned’s speech became more slurred, and he was becoming physically weaker quite quickly. He was still determined to make the most of his increasingly limited physical abilities though, and managed to chainsaw some of the trees at their new home, which they had moved to because it offered a more practical solution to the space issues the disease’s effects demands.

Ned credits the RAF with doing all they could to enable him to continue working for the force, and after being given a desk job once he was diagnosed, it wasn’t until 2005 that he had to be medically discharged. Heather also worked for the RAF until 2008, when she left after Rory was born.

By 2007, Ned had lost a lot of weight as the effects of MND advanced, meaning he could no longer breath unaided, forcing him to rely on a ventilator to keep him alive and inevitably ending his ability to speak forever.

However, the Cullens have always tried their hardest to live as normal a life as possible. Heather said: “Ned is still Ned. MND may have stolen his speech and ability to walk and eat, but he contributes as much now to our lives as he ever did.”

Due to his excellent support system, Ned still goes shopping or into the garden in a specially moulded wheelchair. He has always loved cooking and still enjoys planning meals via his iPad, which is linked to another tablet in the kitchen. Testament to his love of food and cooking is a specially designed pillow cover in his bedroom, which is covered with prints of different foods. He is an avid sports fan, and follows Leicester Tigers Rugby Club, cycling and surfing.

He said his positive mindset helps immensely. “We live our life day by day and keep it as normal as possible. We have always planned things ahead and have things to look forward to – it is never too far ahead, but just enough to keep us going. I am quite good at the moment. It is a scary thing to live with, but I am a positive person.”

Heather added: “He is a great dad to Rory, who at the age of six, has never known his dad to be any different. He is also an inspiration to me, our family and friends and to many others who have met him over the course of the last 11 years.

“We live our lives around MND, we don’t let it control our lives. Ned still uses Facebook and email to keep in contact with his friends and family, which helps to close the gap and let them know what we’ve been up to.

“We have lots of visitors which always lifts our spirits and Ned loves a good old chinwag via the communication board!”