A unique “Monsterski” marathon involving skiing the equivalent height of an Everest a day for a week is being planned by an RAF Wing Commander with Multiple Sclerosis. His challenge is to raise awareness of and cash for Mutual Support - the Armed Forces Branch of the Multiple Sclerosis Society – as it celebrates its 15th year. Mutual SupportMutual Support provides help to hundreds of serving and former servicemen and women by helping them to continue enjoying the cut and thrust of Service life. RAF Helicopter Pilot Wg Cdr Mike Laver (42) is the former commanding officer of 60 Sqn based at the Defence Helicopter Flying School, RAF Shawbury, and led the Joint Helicopter Force in Iraq in 2004.
“Fit, healthy and active, I was quite happily going through life when, out of the blue, my legs went numb in October 2005. Initially I had lost feeling in my feet, but gradually the loss of senses crept all the way up to my hips over the next 4 days. By then I had sought medical advice. With the doctor’s words ‘get to hospital – you’re risking permanent paralysis’ ringing in my ears, I set off.”
“Monsterski was born out of my determination to do something positive once I had been diagnosed and challenge some of the myths of MS – so climbing a few Everests seemed like a good idea.”
The challenge involves skiing more than 150,000 vertical feet in six days – about a Mount Everest a day – in the Canadian Rockies next Spring. In a week of intensive skiing an average skier would ski about 40,000 vertical feet. “This challenge, therefore, is much more than that and will be a tough, demanding test of stamina and fitness,” said Mike. “I am very much looking forward to the challenge, raising much needed cash – and maybe even breaking a record or two!”
Multiple Sclerosis is the most widespread neurological disorder in the UK with around 85,000 people diagnosed as sufferers. But Chairman of Mutual Support, Roger Langdon, says it’s not the end of the world for serving and ex-serving personnel.
“One misconception is that MS is a terminal illness. While it is a lifelong condition, individuals with MS can expect to have a relatively normal life span. However it is complex and even today it is impossible to predict how you may be affected over time, but organisations like Mutual Support can assist in helping sufferers live as normal a life as possible.”
Currently there are more than 200 serving or retired military personnel diagnosed with MS who are registered with Mutual Support. But the charity is certain there are many more within military circles who are suffering and may be are unaware they have the early stages. Others who have the condition may not realise that Mutual Support is there to help.
“Monsterski is part of the campaign we are launching to bring ourselves to the attention of those who may not know we exist and ensure they are aware of the benefits of joining,” said Cdr John Harbour , Naval Vice-President of Mutual Support. “Multiple Sclerosis is not rank-conscious and neither is our organisation - we bring together all ranks and relatives across the three services.”
Mutual Support is a MOD-supported charity that provides help, information and advice to Armed Forces personnel and their families who are affected by MS. Its aim is to “be there” for the needs of any individual to ensure the best possible standards of support.
The organisation began when sufferers Sue Smith (Ex-RN), Kim Bartlett and Susanne Chrichton (both ex-RAF) met in 1991 and became founder members – since then they have seen Mutual Support grow from a small group of people to today’s organisation.
Sue said: ”I received a call out of the blue from Kim as he had heard that I had been diagnosed with MS and wondered how many other people were affected. The organisation has now blossomed and the work the enlarged group does is superb.”
This year saw the introduction of an influential patron in the form of James Grey MP (Chairman of the all-party Parliamentary Group on MS) and the arrival of a new President, Air Commodore Mike Barter. A number of serving personnel were also voted onto the Committee to ensure that the key messages about support within the Services can be understood and passed on.
Recently-introduced employment legislation enshrines the rights of people with disabilities and Mutual Support provides information aimed at sufferers being given every support to continuing work. Some have been supported ever since the organisation was founded.
Warrant Officer David Openshaw (43) is one serviceman who has realised that there is potentially a long, active working life ahead of MS sufferers – and that the MOD is keen to retain them in active employment for as long as possible.
“I serve with the Army’s REME at DLO Andover,” he said. “I was at 12 Regt RA in Germany when I was taken ill with severe nerve pains on the left side of my head and my left arm and shoulder. I was admitted to a neurology dept of the local German hospital in Paderborn.
“After having MRI scans and a lumber puncture I was diagnosed with potential MS. This was in May 04 and I had a recurrence later that year, only this time to my right hand and arm. Again I had an MRI scan and lumber puncture.
“I have been left with a constant tingling around my left ear, head and in my left hand along with a lack of “get up and go.””
“I had no idea an MS support organisation for the Armed Forces existed and found Mutual Support completely by accident whilst surfing the net for information on my illness. I e-mailed Richard Ludford, who is the RAF’s Support Team Manager, who replied with an informative letter explaining all about Mutual Support.
“While still in Germany I managed to see Air Commodore Merry, the RAF’s Vice President of Mutual Support), while he was visiting Germany and discussed my illness. He was very good and answered all the questions I had. It was felt that there was still not enough evidence to confirm the original diagnosis from the German doctors so I returned to the UK in April 2005 and the Medical Centre sent me to specialists at Frimley Park and Salisbury in order to continue investigations.
“Although I still have the same symptoms I have carried on with daily life in the Army and continue with normal duties as much as possible. During the 2½ years since my original illness I keep in touch via the Mutual Support Newsletter and if I were honest have gained most of my knowledge about MS from this publication. The newsletter has been a great help especially when discussing the illness with family and friends.
I think there is a stigma attached to MS because it is silent and can take a long time before it is physically obvious to others. The great thing for me is knowing that when I retire next year Mutual Support will continue to help me cope with my MS.”
Mutual Support now has about 300 members throughout the UK and abroad – both serving and leavers. Some members do not have MS but are family members or simply friends. Being a sufferer is not a pre-requisite for membership!
The organisation has a Welfare Support Team which is able to help members in areas such as state benefits, pensions, careers advice or general MS-related information. They link in with other MS-focussed organisations and can access a range of information surrounding the disability. Whether it’s the latest news on drugs or sensible diet information, complementary therapies or simply the opportunity to talk, Mutual Support meets those needs.
In addition to newsletters and local group activities, national residential meetings are held twice a year, enabling members to get together to share ideas and frustrations or simply to enjoy that well known camaraderie for which the Services are known. A quarter of the groups met recently at a Leicester hotel for a weekend of activities including a visit to a local therapy centre and talks on latest drug therapies.
RAF Sgt Vince Mott was an Administrator at RAF Halton until 2004. He was diagnosed with MS in 2002 and since he was retired from the RAF he has raised money for MS in many different ways and is editor of the Mutual Support newsletter. His frustration with the disease was that it prevented his love of “running up and down mountains, through rivers and bogs”. But after joining Mutual Support in Jul 06, his wish to get back on the hills was granted during the “MS Challenge” - an annual event held at Capel Curig, Snowdonia.
He said: ”The idea was to carry an MS passenger in a wheelchair around a 10K course on Snowdon, giving him or her a chance to enjoy the thrills and spills that they can no longer enjoy by themselves. I decided to be the passenger. Despite being the rider it was the most bone-shattering 3 hrs of my life! I raised £300 but my team of ten collected £5,000 for the therapy centre I attend in Leicester.”
Judy Harbour is the wife of Cdr John Harbour. As a lieutenant in the Royal Navy, she left after a short career commission and was diagnosed with MS in 1993 after losing sight in one eye and suffering from pins and needles. Judy decided early on it was not going to defeat her – so did what she had always dreamed of and opened a Guest House on the shores of Loch Lomond in Scotland.
She said: “It was very hard work but also very rewarding and something that I had always wanted to do but had put off until then. Once diagnosed it made me decide to push the boat out and do what I had really only dreamt about before.”
Within 5 years she had not only been awarded “Best Guest House” in Stirling , Loch Lomond and the Trossachs but she was runner up for the coveted Scottish Businesswoman of the Year. She has recently applied to be a Board member of the MS society in Scotland and, regardless of the ups and downs, “intends to remain fully involved in supporting Mutual Support in its excellent work for current and former Service people who are either serving or retired”. She is now one of the Welfare Support Team for Mutual Support ( Scotland ).
Wg Cdr Laver went on: Monsterski was my answer to being diagnosed. My older brother, Nick, and I learned to ski at the dry ski slope in Edinburgh when he was 9 and I was 7, way back in the 1970s. Since then, we have always skied. Nick ended up working in the ski industry, first as a resort guide, then subsequently for Ski-Independence, a specialist company that organises ski holidays to North America. Given our love of skiing, it made sense for us to link up and try to do the same. Monsterski was born.
Mike and Nick have already raised £20,000 by launching their appeal on the “Just Giving” website. “I simply posted my story and what I wanted to achieve on the site and money started coming in. All has gone to Mutual Support.
“When I first felt ill I underwent a series of tests to see if a tumour was causing the loss of feeling. At the end of the week I saw a specialist who diagnosed me with ‘post viral myelitis’ and pumped me full of steroids to help reduce the swelling on my spinal cord. It took about 6 weeks for me to get full feeling back in my legs.
“The specialist arranged for me to return for a brain scan and nerve impulse tests as an outpatient later. In the meantime, I did as much digging into post viral myelitis as I could, and was a little surprised to read that it is often a pre-cursor for MS. Naively, and notwithstanding what I had read, as my brother-in-law also has MS, I instantly ruled it out as a diagnosis. I mean, how unfair, and therefore unlikely, would it be to have 2 people in the same extended family having the same rare-ish condition? My brain scan and nerve impulse tests were carried out 2 months later and I received a letter fairly speedily thereafter from the specialist to go back to see him for ‘the news’.
“On seeing the brain scan results and hearing his report of my nerve impulse tests, I was more than a little surprised to be given the diagnosis. My world had changed and, not unsurprisingly, my horizons instantly shortened. Any plans I might have had to progress to greatness in the Royal Air Force, if ever it were a possibility, had to be rethought, quickly. Progress to adequateness would have to do.
“I was downgraded to reflect my medical condition and now fly a desk at the Personnel Management Agency at RAF Innsworth.
“Fairly quickly, however, I started to think about what I could do about MS. While I understood the explanation of what it is, I had no particular scientific knowledge and, while science will one day find the cause and hopefully a cure for MS, it needs money. Anything I might be able to do for MS was, therefore, more likely to be based on raising money.
“I still fly helicopters whenever I can and the support I receive from Mutual Support enabled me to focus on the positive.”
Source: The Royal Air Force (RAF)
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