MS drug therapy - the real issues
Order form For a full list of publications visit www.mstrust.org.uk/publications
Books Primary progressive MS exposed NEW Living with fatigue MS explained MS and me - a self-management guide to living with MS MS: what does it mean for me? Tips for living with MS
Exercise Move it for MS – a DVD of exercises for people with MS (£1) Also visit the Exercises for people with MS pages at www.mstrust.org.uk/exercises
MS factsheets Regularly updated, we now have more than 20 titles available including Bladder problems Bowel problems Cognition Pain Cladribine Fingolimod Natalizumab (Tysabri)
■ What drugs are in development and when will they be available in the UK? ■ Will the new drugs simply replace existing treatments? ■ How do the side effects of the new drugs compare with those of existing drugs?
Chatroom transcripts Spasticity and spasms transcript NEW
■ Should I wait until the oral drugs become available?
All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful
I enclose a cheque payable to the MS Trust If you Gift Aid your donation, we can reclaim the tax! I would like the MS Trust to treat this donation and all donations I have made for the four years prior to this year and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.
Signed
■ What disease modifying drugs are currently available and how effective are they?
Date
/
/
You must pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6 April 2010 to 5 April 2011) at least equal to the tax that the MS Trust will claim from HM Revenue and Customs on your Gift Aid donation(s) for that tax year. Please notify us if you change your name or address.
Name Job title (if health professional) Address
Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET
With newer, more potent MS drug therapies on the horizon, treatment decisions for both people with MS and their health professionals are about to become much more complex. It is more important than ever that people with MS have the information they need to make informed decisions in partnership with their health professionals. Health professionals need to communicate effectively with people with MS in order to quantify the risks and benefits of the various treatment options. The MS Trust has identified some of the most challenging questions people with MS ask about disease modifying drugs and put them to Professor David Bates. In a new webcast recently launched on the MS Trust website, Professor Bates discusses the evidence for early treatment and what the longterm data shows about their effectiveness. The role of the new oral and intravenous drug treatments is also discussed. The webcast can be found at www.mstrust.org.uk For a limited time, an online Q&A board will allow you to submit any questions that have not been answered during the webcast. Don't hesitate, watch the webcast today
Multiple Sclerosis Trust Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353
16
www.mstrust.org.uk
February 2011
Inside this issue...
Welcome to the first edition of Open Door for 2011
Core stability
8
2011 will be another year of change and challenges for all of us living and working with MS. Everyone is looking to save money or cut costs and this will have a profound effect on all of the treatments, services and benefits available. Assessing everyone's personal needs may seem like a good idea to target help, but it's very difficult with an infinitely variable condition like MS. Making sure people understand what it is like to live with MS will be important and there are two events coming up which can help with this.
Running alongside MS 10
Firstly, in the last edition of Open Door I mentioned that our third survey of MS services, in partnership with the Royal College of Physicians, would be taking place this year. If you live in England or Wales and had contact with the NHS (your GP, hospital, therapist etc.) about your MS in 2010 please help us by taking part. The more information we collect the more significant the results and the more pressure we can apply for service improvements. The survey can be found on our website at www.mstrust.org.uk/survey. Secondly, we have new dates for MS Awareness week - 21-27 May - and we have enclosed a poster of some of our plans for that time. We would be really grateful if you could find somewhere to display it in your locality.
Wildlife of a garden
12
In this issue we are pleased to introduce our new book Primary progressive MS exposed. All of our printed publications are supplied free of charge thanks to your generous donations and fundraising. We have enclosed an updated list of all our publications, please pass it on if you know anyone else who may find it useful. Thank you very much for all your support and very best wishes for 2011.
Also inside: Pam Macfarlane Chief Executive
2011 - What will the year bring
Primary progressive MS exposed - new book The MS Trust's new book explores both the physical and emotional aspects of a diagnosis of primary progressive MS. It looks at living with this type of MS and the ongoing management of the condition. On page 6 Alan Beevers talks about life with primary progressive MS and on page 7 Alison Smith discusses her role as a rehabilitation nurse.
www.mstrust.org.uk
2
Call: 0800 032 38 39
News
3
Research news
4
Primary progressive MS
6
Supporting the
14
MS Trust
MS drug therapy the real issues
16
2011 - What will the year bring for people with MS?
Nicola Russell, Director of Services, MS Trust Probably never before has a year looked so uncertain from the perspective of health and social care - major reform of the NHS, lack of money all round and a risk that a condition like multiple sclerosis will be lost in the rush to cope with heart disease, respiratory conditions and cancer. All these issues are exercising us considerably. The MS Trust believes that people with MS should: ■ Have access to high quality services to enable them to maintain as active a lifestyle as possible ■ Have access to trained health care professionals including MS specialist neurologists, nurses, and therapists ■ Be equal partners with the professionals in making choices about their care ■ Have the information to help make the right choices for them ■ Have access to joined up services across health and social care We will be focusing on a number of key issues in 2011.
Access to MS specialist nurses and specialist therapy services Since the 1990s, the MS Trust has taken the lead role of campaigning for MS specialist nurses and developing a network of specialists. We believe that everyone given a diagnosis of MS has a right to access an MS specialist nurse in the same way as people with cancer have access to Macmillan nurses. We will be working to ensure that none of the hard won posts are lost in any budget cuts or NHS reorganisations. We will need your help as local campaigning can often be effective. In addition we will continue to work with specialist nurses to provide them with professional support and training. We will also continue to support the Therapists in MS network in increasing specialist therapy services across the UK.
Data to measure MS services against NICE guidance We are undertaking research with the Royal College of Physicians to demonstrate the level of services available across England and Wales in relation to the NICE MS management guidelines. If you had contact
2
with the NHS during 2010 please tell us about your experience. The audit is available now at www.mstrust.org.uk/survey
Access to drug therapies across the UK 2011 has the potential to see new therapies join the range of drugs available for people with MS. NICE will assess these new drugs and we will be participating in the assessment processes. The new drugs will enhance the options available to people with MS and their neurologists. The choices available will be more sophisticated and the option to treat MS early before there is underlying neuronal damage is increasingly realistic. If you want to learn more about current and future drugs look at our new webcast, see back page for details.
The provision of accurate evidence based information to people with MS their friends and families Information provision is the bedrock of all our activities here at the MS Trust and in 2011 we aim to maintain our reputation for an effective personal phone service alongside a comprehensive website and a range of books and factsheets.
Local support for people having trouble accessing specific services It is clear that in the current climate individuals may be having trouble accessing services, failing to get joined up care between health and social services or losing benefits they have had in the past. The MS Trust has always focused its activity on the health aspects of MS and we are concerned that with some of the proposed changes people with MS may lose out. We have limited capacity but we will continue to support people not getting access to functional electrical stimulation (FES), people failing to get good continence or spasticity management or other health related problems. 2011 looks to be a busy year! If you have any thoughts or comments on any of these ambitions we would love to hear from you. Contact nicola.russell@mstrust.org.uk
www.mstrust.org.uk
News
MS news in the press handle with care
Changes to benefits
Everyone is looking for the next great breakthrough in managing or reversing MS. A couple of stories in December illustrated why the promise in the headlines should be treated with a degree of caution. Reports of advances in the understanding of the role of stem cells by researchers in Cambridge and Edinburgh created much excitement1. However, different groups will see these results in different ways. For researchers, this study, which was laboratory based involving rats and also donated tissue, is a breakthrough. It suggests a mechanism by which cells in the body might be encouraged to replace damaged myelin and repair damage caused by MS. Further work will be required to identify if a safe and effective drug can be developed to trigger this process. The researchers estimate that this might take 15 years. For many people with MS headlines such as Stem cell finding could reverse ravages of multiple sclerosis2 are both exciting and frustrating. A great deal can happen to someone with MS in 15 years. Where the researchers see this news as a great step forwards, for someone living with MS the research process can seem glacially slow. Another story with the headline Eating purple fruit could fend off Alzheimer's disease and multiple sclerosis3 seemed pretty clear cut. However the underlying research is proposing a theory based on the effects of chemicals, some of which can be derived via diet, binding with iron in the blood. NHS Choices criticised the news story saying, “Unproven theories raised in the review are presented as definite fact in the newspaper article.”4 The press needs new stories to sell papers and will often report early or theoretical research, particularly in headlines, as immediate breakthroughs in treatment. This can often do no benefit to researchers, whose important work can be made to look slow or unproductive, and for people with MS can seem like a succession of raised and dashed hopes. The MS Trust will continue to try to distil the facts from the hype. References 1. British stem cell research raises possibility of future treatments to repair MS damage - MS Trust news item 6 Dec 2010 2. Stem cell finding could reverse ravages of multiple sclerosis Daily Mail 6 Dec 2010 3. Eating purple fruit could fend off Alzheimer's disease and multiple sclerosis - Daily Telegraph 8 Dec 2010 4. Purple fruit health claims are premature - NHS Choices 8 Dec 2010
Disability Living Allowance (DLA) has been around for a long time and as the gateway to other aspects of support proposed changes were certain to be concerning. The real question is will the new Personal Independence Payment (PIP) encourage independence or is it just a cost saving exercise? The MS Trust is worried that proposed changes to the assessment and allocation of PIPs may have adverse effects for people with MS. In particular we have the following concerns: ■ How will the government ensure that people with MS are not penalised for making personal efforts to manage their disabilities and increase their quality of life? ■ What does the government mean by stating that they wish to update the definitions of disability? ■ How will aids and adaptations be taken into account in the new assessments? An aid or adaptation only aids - it does not solve the problem, the disability still exists. DLA is often the means for people to fund both the purchase and maintenance of such aids. ■ Will the assessments be sensitive enough to the fluctuating nature of MS? ■ How will the new reforms handle those people who have currently been told they have DLA for life? The MS Trust position statement on the proposed changes can be found on our website.
Constipation An article in the November issue of Open Door presented one woman's story of managing constipation due to her MS and how Movicol had not helped her. We know from calls to the Information Service that this one experience is not typical and for many people Movicol is a critical element of their bowel management.
Call: 0800 032 38 39
3
2011 - What will the year bring for people with MS?
Nicola Russell, Director of Services, MS Trust Probably never before has a year looked so uncertain from the perspective of health and social care - major reform of the NHS, lack of money all round and a risk that a condition like multiple sclerosis will be lost in the rush to cope with heart disease, respiratory conditions and cancer. All these issues are exercising us considerably. The MS Trust believes that people with MS should: ■ Have access to high quality services to enable them to maintain as active a lifestyle as possible ■ Have access to trained health care professionals including MS specialist neurologists, nurses, and therapists ■ Be equal partners with the professionals in making choices about their care ■ Have the information to help make the right choices for them ■ Have access to joined up services across health and social care We will be focusing on a number of key issues in 2011.
Access to MS specialist nurses and specialist therapy services Since the 1990s, the MS Trust has taken the lead role of campaigning for MS specialist nurses and developing a network of specialists. We believe that everyone given a diagnosis of MS has a right to access an MS specialist nurse in the same way as people with cancer have access to Macmillan nurses. We will be working to ensure that none of the hard won posts are lost in any budget cuts or NHS reorganisations. We will need your help as local campaigning can often be effective. In addition we will continue to work with specialist nurses to provide them with professional support and training. We will also continue to support the Therapists in MS network in increasing specialist therapy services across the UK.
Data to measure MS services against NICE guidance We are undertaking research with the Royal College of Physicians to demonstrate the level of services available across England and Wales in relation to the NICE MS management guidelines. If you had contact
2
with the NHS during 2010 please tell us about your experience. The audit is available now at www.mstrust.org.uk/survey
Access to drug therapies across the UK 2011 has the potential to see new therapies join the range of drugs available for people with MS. NICE will assess these new drugs and we will be participating in the assessment processes. The new drugs will enhance the options available to people with MS and their neurologists. The choices available will be more sophisticated and the option to treat MS early before there is underlying neuronal damage is increasingly realistic. If you want to learn more about current and future drugs look at our new webcast, see back page for details.
The provision of accurate evidence based information to people with MS their friends and families Information provision is the bedrock of all our activities here at the MS Trust and in 2011 we aim to maintain our reputation for an effective personal phone service alongside a comprehensive website and a range of books and factsheets.
Local support for people having trouble accessing specific services It is clear that in the current climate individuals may be having trouble accessing services, failing to get joined up care between health and social services or losing benefits they have had in the past. The MS Trust has always focused its activity on the health aspects of MS and we are concerned that with some of the proposed changes people with MS may lose out. We have limited capacity but we will continue to support people not getting access to functional electrical stimulation (FES), people failing to get good continence or spasticity management or other health related problems. 2011 looks to be a busy year! If you have any thoughts or comments on any of these ambitions we would love to hear from you. Contact nicola.russell@mstrust.org.uk
www.mstrust.org.uk
News
MS news in the press handle with care
Changes to benefits
Everyone is looking for the next great breakthrough in managing or reversing MS. A couple of stories in December illustrated why the promise in the headlines should be treated with a degree of caution. Reports of advances in the understanding of the role of stem cells by researchers in Cambridge and Edinburgh created much excitement1. However, different groups will see these results in different ways. For researchers, this study, which was laboratory based involving rats and also donated tissue, is a breakthrough. It suggests a mechanism by which cells in the body might be encouraged to replace damaged myelin and repair damage caused by MS. Further work will be required to identify if a safe and effective drug can be developed to trigger this process. The researchers estimate that this might take 15 years. For many people with MS headlines such as Stem cell finding could reverse ravages of multiple sclerosis2 are both exciting and frustrating. A great deal can happen to someone with MS in 15 years. Where the researchers see this news as a great step forwards, for someone living with MS the research process can seem glacially slow. Another story with the headline Eating purple fruit could fend off Alzheimer's disease and multiple sclerosis3 seemed pretty clear cut. However the underlying research is proposing a theory based on the effects of chemicals, some of which can be derived via diet, binding with iron in the blood. NHS Choices criticised the news story saying, “Unproven theories raised in the review are presented as definite fact in the newspaper article.”4 The press needs new stories to sell papers and will often report early or theoretical research, particularly in headlines, as immediate breakthroughs in treatment. This can often do no benefit to researchers, whose important work can be made to look slow or unproductive, and for people with MS can seem like a succession of raised and dashed hopes. The MS Trust will continue to try to distil the facts from the hype. References 1. British stem cell research raises possibility of future treatments to repair MS damage - MS Trust news item 6 Dec 2010 2. Stem cell finding could reverse ravages of multiple sclerosis Daily Mail 6 Dec 2010 3. Eating purple fruit could fend off Alzheimer's disease and multiple sclerosis - Daily Telegraph 8 Dec 2010 4. Purple fruit health claims are premature - NHS Choices 8 Dec 2010
Disability Living Allowance (DLA) has been around for a long time and as the gateway to other aspects of support proposed changes were certain to be concerning. The real question is will the new Personal Independence Payment (PIP) encourage independence or is it just a cost saving exercise? The MS Trust is worried that proposed changes to the assessment and allocation of PIPs may have adverse effects for people with MS. In particular we have the following concerns: ■ How will the government ensure that people with MS are not penalised for making personal efforts to manage their disabilities and increase their quality of life? ■ What does the government mean by stating that they wish to update the definitions of disability? ■ How will aids and adaptations be taken into account in the new assessments? An aid or adaptation only aids - it does not solve the problem, the disability still exists. DLA is often the means for people to fund both the purchase and maintenance of such aids. ■ Will the assessments be sensitive enough to the fluctuating nature of MS? ■ How will the new reforms handle those people who have currently been told they have DLA for life? The MS Trust position statement on the proposed changes can be found on our website.
Constipation An article in the November issue of Open Door presented one woman's story of managing constipation due to her MS and how Movicol had not helped her. We know from calls to the Information Service that this one experience is not typical and for many people Movicol is a critical element of their bowel management.
Call: 0800 032 38 39
3
Lower dose of Botox to treat overactive bladder
Research news
Aquatic exercise is beneficial A small study of 11 people with MS who took part in a group aquatic exercise programme reported that the training improved their mobility and that the participants enjoyed the experience. The hour long sessions were held twice weekly for five weeks and included a variety of exercises encompassing aerobic activity, strength and flexibility exercises, walking and balance activities. Improvements were found in grip strength, walking speed and balance. The authors suggest that an aquatic training programme is suitable and beneficial for people with MS and could be used within community-based wellness programmes. Salem Y, et al. Community-based group aquatic programme for individuals with multiple sclerosis: a pilot study. Disability & Rehabilitation 2010 Aug 20. [Epub ahead of print]
Does fampridine improve walking speed? Initial clinical trials of a sustained-release formulation of fampridine (fampridine-SR or dalfampridine) have shown the drug improves walking in some people with MS. This study was designed to confirm the results of previous studies and to establish how long the effect of the sustained release formulation persisted. In a multicentre double blind study, participants with any type of MS received either fampridine tablets (120 people) or a placebo (119 people) twice daily for nine weeks. The time taken to walk 25 feet was measured. More people in the fampridine group showed a consistent improvement in walking speed (42.9%) compared with placebo (9.3%). For those responding to fampridine, walking speed increased on average by 24.7%. The mean improvement in walking 8-12 hours after the last dose was 25.7%, indicating continued effectiveness of the drug during the period between doses. Fampridine (Ampyra) has been licensed in the USA and is currently going through regulatory approval in Europe. A decision is expected in 2011. Goodman AD, et al. A phase 3 trial of extended release oral dalfampridine in multiple sclerosis. Annals of Neurology 2010;68(4):494-502.
4
Massage to alleviate constipation Constipation can have a big impact on quality of life. Abdominal massage has previously been found to help people with other conditions; this research, which was supported by the MS Trust, aimed to establish whether abdominal massage might be helpful for people with MS. 30 people with MS were allocated to two groups, both of which were given bowel management advice. In addition, people in the massage group or their carers were taught how to do abdominal massage on a daily basis. An improvement in constipation symptoms was found in both groups at the end of the four week study, however, the massage group improved significantly more. McClurg D, et al. Abdominal massage for the alleviation of constipation symptoms in people with multiple sclerosis: a randomized controlled feasibility study. Multiple Sclerosis 2010 Oct 12. [Epub ahead of print]
Mindfulness training improves well-being Mindfulness, using concepts borrowed from Buddhist practices, combines meditation, stretching exercises and breathing techniques to focus on the present moment. It is increasingly being used in combination with talking therapies to reduce anxiety and stress. A study has evaluated mindfulness training in people with MS. 150 people with relapsing remitting or secondary progressive MS took part in an eight week study, receiving either standard care or a mindfulness training course involving group and daily home sessions. Learning these techniques helped people in the mindfulness group cope better with depression, fatigue and anxiety at the end of the course and also at a six-month follow-up. Grossman P, et al. MS quality of life, depression, and fatigue improve after mindfulness training: a randomized trial. Neurology 2010;75(13):1141-1149.
www.mstrust.org.uk
Botulinum toxin A (Botox), injected directly into the bladder wall, has been found to be very effective at treating the symptoms of urgency and frequency due to overactive bladder. However, at the dose normally used, Botox also affects normal bladder emptying so people need to carry out self-catheterisation. A small study (12 people) has found that a lower dose of Botox was effective at managing bladder problems. There was an initial increase in urine retention but this had decreased by 12 weeks after treatment. The authors conclude that the lower dose of Botox is effective and that for most people, normal bladder emptying will be retained, avoiding the need for selfcatherisation. Larger studies will be needed to confirm these initial results. Mehnert U, et al. The effect of botulinum toxin type A on overactive bladder symptoms in patients with multiple sclerosis: a pilot study. Journal of Urology 2010;184(3):1011-1016.
Oral laquinimod reduces MRI lesions The results of a 36-week extension study of oral laquinimod in people with relapsing remitting MS has shown significant reductions in disease activity seen on MRI. Two earlier studies compared the safety and effectiveness of 0.3mg and 0.6mg daily doses against placebo in people with relapsing remitting MS. Upon completion of these 36-week studies, participants were enrolled into a 36-week extension study during which they all took a daily dose of 0.3mg or 0.6mg laquinimod. An average 52% reduction in the number of active lesions on MRI was seen in the group who were switched from placebo to laquinimod, while the reduction in the average number of active lesions seen in the groups receiving laquinimod in both studies, was sustained at around 40%. Comi G, et al. Oral laquinimod in patients with relapsing-remitting multiple sclerosis: 36-week double-blind active extension of the multi-centre, randomized, double-blind, parallel-group placebo-controlled study. Multiple Sclerosis 2010;16(11):1360-1366.
Drug licensing news There has been mixed news for new MS following the January meeting of the committee that advises the European Medicines Agency (EMA), the regulatory body for drugs in the EU..
Fingolimod The Committee for Medicinal Products for Human Use (CHMP) has recommended that the EMA license fingolimod (Gilenya) as a second line treatment for people with relapsing remitting MS. They suggest that the drug, which is taken as a tablet, should be available for people who are continuing to experience frequent relapses despite treatment with beta interferon or glatiramer acetate or for people with rapidly evolving severe relapsing remitting MS. This means that most people will continue to start treatment with one of the beta interferon drugs (Avonex, Betaferon, Extavia, or Rebif) or glatiramer acetate (Copaxone). Fingolimod will join natalizumab (Tysabri) as a treatment option for people whose MS is not controlled by these first line drugs. The CHMP recommendation will be considered by the EMA in the next three months. Once a licence is granted, fingolimod will be appraised by NICE before funding by the NHS can be guaranteed. NICE has already started its appraisal of fingolimod and the first appraisal committee meeting is scheduled for July.
Cladribine At the same meeting, CHMP upheld their decision to reject cladribine (Movectro), another oral disease modifying drug. This was originally rejected in September 2010 but the manufacturer, Merck, appealed this decision. CHMP has stood by its earlier decision that the benefits of cladribine do not outweigh its risks. Merck now plan further trials but don't expect to re-submit cladribine until 2012 at the earliest.
Fampridine
Picture: Sarah Reid
Fampridine (Fampyra), a drug that can improve walking ability in multiple sclerosis, has also not been recommended for a licence. Fampridine was licensed in the USA - where it is known as Ampyra - in January 2010. The manufacturer, Biogen Idec, intends to appeal against this decision.
Call: 0800 032 38 39
5
Lower dose of Botox to treat overactive bladder
Research news
Aquatic exercise is beneficial A small study of 11 people with MS who took part in a group aquatic exercise programme reported that the training improved their mobility and that the participants enjoyed the experience. The hour long sessions were held twice weekly for five weeks and included a variety of exercises encompassing aerobic activity, strength and flexibility exercises, walking and balance activities. Improvements were found in grip strength, walking speed and balance. The authors suggest that an aquatic training programme is suitable and beneficial for people with MS and could be used within community-based wellness programmes. Salem Y, et al. Community-based group aquatic programme for individuals with multiple sclerosis: a pilot study. Disability & Rehabilitation 2010 Aug 20. [Epub ahead of print]
Does fampridine improve walking speed? Initial clinical trials of a sustained-release formulation of fampridine (fampridine-SR or dalfampridine) have shown the drug improves walking in some people with MS. This study was designed to confirm the results of previous studies and to establish how long the effect of the sustained release formulation persisted. In a multicentre double blind study, participants with any type of MS received either fampridine tablets (120 people) or a placebo (119 people) twice daily for nine weeks. The time taken to walk 25 feet was measured. More people in the fampridine group showed a consistent improvement in walking speed (42.9%) compared with placebo (9.3%). For those responding to fampridine, walking speed increased on average by 24.7%. The mean improvement in walking 8-12 hours after the last dose was 25.7%, indicating continued effectiveness of the drug during the period between doses. Fampridine (Ampyra) has been licensed in the USA and is currently going through regulatory approval in Europe. A decision is expected in 2011. Goodman AD, et al. A phase 3 trial of extended release oral dalfampridine in multiple sclerosis. Annals of Neurology 2010;68(4):494-502.
4
Massage to alleviate constipation Constipation can have a big impact on quality of life. Abdominal massage has previously been found to help people with other conditions; this research, which was supported by the MS Trust, aimed to establish whether abdominal massage might be helpful for people with MS. 30 people with MS were allocated to two groups, both of which were given bowel management advice. In addition, people in the massage group or their carers were taught how to do abdominal massage on a daily basis. An improvement in constipation symptoms was found in both groups at the end of the four week study, however, the massage group improved significantly more. McClurg D, et al. Abdominal massage for the alleviation of constipation symptoms in people with multiple sclerosis: a randomized controlled feasibility study. Multiple Sclerosis 2010 Oct 12. [Epub ahead of print]
Mindfulness training improves well-being Mindfulness, using concepts borrowed from Buddhist practices, combines meditation, stretching exercises and breathing techniques to focus on the present moment. It is increasingly being used in combination with talking therapies to reduce anxiety and stress. A study has evaluated mindfulness training in people with MS. 150 people with relapsing remitting or secondary progressive MS took part in an eight week study, receiving either standard care or a mindfulness training course involving group and daily home sessions. Learning these techniques helped people in the mindfulness group cope better with depression, fatigue and anxiety at the end of the course and also at a six-month follow-up. Grossman P, et al. MS quality of life, depression, and fatigue improve after mindfulness training: a randomized trial. Neurology 2010;75(13):1141-1149.
www.mstrust.org.uk
Botulinum toxin A (Botox), injected directly into the bladder wall, has been found to be very effective at treating the symptoms of urgency and frequency due to overactive bladder. However, at the dose normally used, Botox also affects normal bladder emptying so people need to carry out self-catheterisation. A small study (12 people) has found that a lower dose of Botox was effective at managing bladder problems. There was an initial increase in urine retention but this had decreased by 12 weeks after treatment. The authors conclude that the lower dose of Botox is effective and that for most people, normal bladder emptying will be retained, avoiding the need for selfcatherisation. Larger studies will be needed to confirm these initial results. Mehnert U, et al. The effect of botulinum toxin type A on overactive bladder symptoms in patients with multiple sclerosis: a pilot study. Journal of Urology 2010;184(3):1011-1016.
Oral laquinimod reduces MRI lesions The results of a 36-week extension study of oral laquinimod in people with relapsing remitting MS has shown significant reductions in disease activity seen on MRI. Two earlier studies compared the safety and effectiveness of 0.3mg and 0.6mg daily doses against placebo in people with relapsing remitting MS. Upon completion of these 36-week studies, participants were enrolled into a 36-week extension study during which they all took a daily dose of 0.3mg or 0.6mg laquinimod. An average 52% reduction in the number of active lesions on MRI was seen in the group who were switched from placebo to laquinimod, while the reduction in the average number of active lesions seen in the groups receiving laquinimod in both studies, was sustained at around 40%. Comi G, et al. Oral laquinimod in patients with relapsing-remitting multiple sclerosis: 36-week double-blind active extension of the multi-centre, randomized, double-blind, parallel-group placebo-controlled study. Multiple Sclerosis 2010;16(11):1360-1366.
Drug licensing news There has been mixed news for new MS following the January meeting of the committee that advises the European Medicines Agency (EMA), the regulatory body for drugs in the EU..
Fingolimod The Committee for Medicinal Products for Human Use (CHMP) has recommended that the EMA license fingolimod (Gilenya) as a second line treatment for people with relapsing remitting MS. They suggest that the drug, which is taken as a tablet, should be available for people who are continuing to experience frequent relapses despite treatment with beta interferon or glatiramer acetate or for people with rapidly evolving severe relapsing remitting MS. This means that most people will continue to start treatment with one of the beta interferon drugs (Avonex, Betaferon, Extavia, or Rebif) or glatiramer acetate (Copaxone). Fingolimod will join natalizumab (Tysabri) as a treatment option for people whose MS is not controlled by these first line drugs. The CHMP recommendation will be considered by the EMA in the next three months. Once a licence is granted, fingolimod will be appraised by NICE before funding by the NHS can be guaranteed. NICE has already started its appraisal of fingolimod and the first appraisal committee meeting is scheduled for July.
Cladribine At the same meeting, CHMP upheld their decision to reject cladribine (Movectro), another oral disease modifying drug. This was originally rejected in September 2010 but the manufacturer, Merck, appealed this decision. CHMP has stood by its earlier decision that the benefits of cladribine do not outweigh its risks. Merck now plan further trials but don't expect to re-submit cladribine until 2012 at the earliest.
Fampridine
Picture: Sarah Reid
Fampridine (Fampyra), a drug that can improve walking ability in multiple sclerosis, has also not been recommended for a licence. Fampridine was licensed in the USA - where it is known as Ampyra - in January 2010. The manufacturer, Biogen Idec, intends to appeal against this decision.
Call: 0800 032 38 39
5
Coping with primary progressive MS
Working with people with primary progressive MS
Alison Smith, rehabilitation nurse
Alan Beevers To mark the publication of the MS Trust's new book Primary progressive MS exposed, the articles on the next two pages look at this type of MS from different points of view. In 2003 I was diagnosed with primary progressive MS (PPMS). I didn't see it coming. Although I had had symptoms for over a year and had looked into what might have been going on - a prolapsed disc, Lyme disease, motor neurone disease and, yes, MS - it was still a shock. I was 49 and had just returned to work having been forced into early retirement from my previous profession eight years earlier after emergency gut surgery. So to hear that I had a progressive, neurological disorder with no sign of cure or treatment was a blow. I remember the neurologist saying the words - “you have MS... it won't kill you... it will progress but perhaps slowly... it may just affect your legs... there is no treatment on offer... I'll refer you to the MS nurse...” What's the 'appropriate' response to that? My partner, Margaret, and I went for lunch with a (very) large glass of wine and found ourselves laughing hysterically. At the time we didn't weep and, perhaps strangely, I wasn't afraid. I thought that we would be able to cope with this. I say 'we' because it is clear that MS affects more than just the 'patient'. We may not both have MS but MS has us both! So what does coping with PPMS mean? Well, I certainly haven't managed on my own. I believe in the idea of the 'expert patient', of putting the emphasis on self-management but I've taken help from wherever I could find it. Margaret is my prime source of support. I've contacted physiotherapists, OTs,
MS nurses, GPs, complementary therapists, others with MS, charities like the MS Trust, and they've all helped. I've tried meditation, yoga, gym exercises, different diets. I'm learning the piano and play percussion - trying to be creative really helps.
I first started to work with people with multiple sclerosis when I transferred to the Kings Lodge rehabilitation unit in Derby in the late 1980s. At that time people were admitted for one of two reasons.
themselves and achieve them against the (perceived) odds. I am also privileged to help some people raise their expectations and fulfil dreams they thought unattainable.
1. For inpatient rehabilitation following a relapse
One discovery has made a big difference. It occurred to me that MS is all about LOSS. Loss is a natural and lifelong human experience. We lose our keys or our diary; we move house or job; our granny dies and our father and our best friend. We respond in a variety of ways depression, anger, euphoria, denial, blame. My experience of MS has been one of a rolling package of losses loss of mobility, bladder control, concentration, energy; and loss of independence, financial security, sexual identity. The list goes on and changes over time.
2. Respite care; this was often people with progressive MS. Whilst in Kings Lodge they would have their MS reviewed, effectively an MS MOT.
People also have goals around staying healthy, minimising risks, and preventing secondary complications. As a health professional I am expected to advocate 'doing the best thing' all of the time, yet this can make me uncomfortable. In life we all have choices and some of these relate to, or impact upon, our health. There aren't many people who don't take risks sometimes - that is part of life. So I will support any patient who doesn't always want to do the ‘best thing’. Maintaining a balance between playing safe and taking life enhancing risks is a realistic compromise. With PPMS the possibilities for this sort of compromise are quite extensive. However this balance cannot be struck if there is insufficient information.
But if the experience of loss is natural and inevitable so is healing and recovery. You can't escape loss - you can try but you end up stuck in denial or depression. The alternative is to embrace it, to work through it, to grieve and move on. OK, so I can't walk more than a few steps any more. But I can get really good sticks. I can improve my balance and core strength. I can ask for help - people can be so kind. I can acquire a collection of buggies and wheelchairs to fit my different needs (thanks to the NHS, classified ads and a gift from a friend). By embracing loss and change you deepen your experience of life. It may be trite to say there is no loss without gain but there is a truth lurking there. Having PPMS is a stinker but a coping strategy of 'poor me' just doesn't work so is not worth pursuing. Instead, I try to be conscious of my losses; to grieve and work towards acceptance. And I remain amazed by what still works!
Primary progressive MS exposed “Primary progressive MS exposed is a great resource. I noticed that I was nervous when I first opened it. I think I imagined that there was still a grim secret that I hadn't been told about PPMS and that it might be revealed in this book. In fact I found its message to be really positive and helpful. I did learn some new facts about the condition but good information can only be helpful and some of the ideas about coping with MS - and the snippets of other people's stories - are really useful” - Alan Beevers Primary progressive MS exposed is free and can be ordered from the back page.
6
www.mstrust.org.uk
I always felt drawn to the issues of the second group. In 2001 I was lucky enough to join the rehabilitation medicine outpatient team. Initially I was working with people with different progressive neurological conditions; but MS became my special interest. I now run two clinics a week, see patients in their own home and provide telephone advice and support to patients, their relatives and other health and social professionals involved. I always feel saddened and frustrated when people have a belief that PPMS is 'the worst kind'. In the presence of a steadily progressing condition, I see many patients come into their own. Considering their future, making plans, and taking control in a way that may have been alien to them prior to being diagnosed. Witnessing someone do this is a profoundly humbling experience. I always consider my work as complementary to the patients' own adjustments and plans. Of course I have 'specialist knowledge' but that is there as a resource for the patients to use. Forward planning is a useful approach to minimising the day to day impact of MS, in PPMS the potential for this is considerable. At the heart of rehabilitation medicine is goal setting. I see people set incredible goals for
Primary progressive MS exposed “I am sure this book will help people living with PPMS. Not only does it provide bespoke information enabling them to plan, make decisions and work out their personal way of living with their MS, but it may also give healthcare professionals greater confidence in discussing the issues faced by a person with this diagnosis” Alison Smith Primary progressive MS exposed is free and can be ordered from the back page.
Call: 0800 032 38 39
7
Coping with primary progressive MS
Working with people with primary progressive MS
Alison Smith, rehabilitation nurse
Alan Beevers To mark the publication of the MS Trust's new book Primary progressive MS exposed, the articles on the next two pages look at this type of MS from different points of view. In 2003 I was diagnosed with primary progressive MS (PPMS). I didn't see it coming. Although I had had symptoms for over a year and had looked into what might have been going on - a prolapsed disc, Lyme disease, motor neurone disease and, yes, MS - it was still a shock. I was 49 and had just returned to work having been forced into early retirement from my previous profession eight years earlier after emergency gut surgery. So to hear that I had a progressive, neurological disorder with no sign of cure or treatment was a blow. I remember the neurologist saying the words - “you have MS... it won't kill you... it will progress but perhaps slowly... it may just affect your legs... there is no treatment on offer... I'll refer you to the MS nurse...” What's the 'appropriate' response to that? My partner, Margaret, and I went for lunch with a (very) large glass of wine and found ourselves laughing hysterically. At the time we didn't weep and, perhaps strangely, I wasn't afraid. I thought that we would be able to cope with this. I say 'we' because it is clear that MS affects more than just the 'patient'. We may not both have MS but MS has us both! So what does coping with PPMS mean? Well, I certainly haven't managed on my own. I believe in the idea of the 'expert patient', of putting the emphasis on self-management but I've taken help from wherever I could find it. Margaret is my prime source of support. I've contacted physiotherapists, OTs,
MS nurses, GPs, complementary therapists, others with MS, charities like the MS Trust, and they've all helped. I've tried meditation, yoga, gym exercises, different diets. I'm learning the piano and play percussion - trying to be creative really helps.
I first started to work with people with multiple sclerosis when I transferred to the Kings Lodge rehabilitation unit in Derby in the late 1980s. At that time people were admitted for one of two reasons.
themselves and achieve them against the (perceived) odds. I am also privileged to help some people raise their expectations and fulfil dreams they thought unattainable.
1. For inpatient rehabilitation following a relapse
One discovery has made a big difference. It occurred to me that MS is all about LOSS. Loss is a natural and lifelong human experience. We lose our keys or our diary; we move house or job; our granny dies and our father and our best friend. We respond in a variety of ways depression, anger, euphoria, denial, blame. My experience of MS has been one of a rolling package of losses loss of mobility, bladder control, concentration, energy; and loss of independence, financial security, sexual identity. The list goes on and changes over time.
2. Respite care; this was often people with progressive MS. Whilst in Kings Lodge they would have their MS reviewed, effectively an MS MOT.
People also have goals around staying healthy, minimising risks, and preventing secondary complications. As a health professional I am expected to advocate 'doing the best thing' all of the time, yet this can make me uncomfortable. In life we all have choices and some of these relate to, or impact upon, our health. There aren't many people who don't take risks sometimes - that is part of life. So I will support any patient who doesn't always want to do the ‘best thing’. Maintaining a balance between playing safe and taking life enhancing risks is a realistic compromise. With PPMS the possibilities for this sort of compromise are quite extensive. However this balance cannot be struck if there is insufficient information.
But if the experience of loss is natural and inevitable so is healing and recovery. You can't escape loss - you can try but you end up stuck in denial or depression. The alternative is to embrace it, to work through it, to grieve and move on. OK, so I can't walk more than a few steps any more. But I can get really good sticks. I can improve my balance and core strength. I can ask for help - people can be so kind. I can acquire a collection of buggies and wheelchairs to fit my different needs (thanks to the NHS, classified ads and a gift from a friend). By embracing loss and change you deepen your experience of life. It may be trite to say there is no loss without gain but there is a truth lurking there. Having PPMS is a stinker but a coping strategy of 'poor me' just doesn't work so is not worth pursuing. Instead, I try to be conscious of my losses; to grieve and work towards acceptance. And I remain amazed by what still works!
Primary progressive MS exposed “Primary progressive MS exposed is a great resource. I noticed that I was nervous when I first opened it. I think I imagined that there was still a grim secret that I hadn't been told about PPMS and that it might be revealed in this book. In fact I found its message to be really positive and helpful. I did learn some new facts about the condition but good information can only be helpful and some of the ideas about coping with MS - and the snippets of other people's stories - are really useful” - Alan Beevers Primary progressive MS exposed is free and can be ordered from the back page.
6
www.mstrust.org.uk
I always felt drawn to the issues of the second group. In 2001 I was lucky enough to join the rehabilitation medicine outpatient team. Initially I was working with people with different progressive neurological conditions; but MS became my special interest. I now run two clinics a week, see patients in their own home and provide telephone advice and support to patients, their relatives and other health and social professionals involved. I always feel saddened and frustrated when people have a belief that PPMS is 'the worst kind'. In the presence of a steadily progressing condition, I see many patients come into their own. Considering their future, making plans, and taking control in a way that may have been alien to them prior to being diagnosed. Witnessing someone do this is a profoundly humbling experience. I always consider my work as complementary to the patients' own adjustments and plans. Of course I have 'specialist knowledge' but that is there as a resource for the patients to use. Forward planning is a useful approach to minimising the day to day impact of MS, in PPMS the potential for this is considerable. At the heart of rehabilitation medicine is goal setting. I see people set incredible goals for
Primary progressive MS exposed “I am sure this book will help people living with PPMS. Not only does it provide bespoke information enabling them to plan, make decisions and work out their personal way of living with their MS, but it may also give healthcare professionals greater confidence in discussing the issues faced by a person with this diagnosis” Alison Smith Primary progressive MS exposed is free and can be ordered from the back page.
Call: 0800 032 38 39
7
Core stability training in MS
better balance while reaching forward and to the side, improved balance standing on one leg, and less difficulty carrying a drink while walking. One further participant gained some benefit, with improvement in four of the measures, while two people did not appear to gain any benefit. One participant described the impact of the exercise programme on his daily life:
Margaret Gear, Neurophysiotherapist, Helen Hunter, Clinical Specialist Neurophysiotherapist, Dr Jenny Freeman, Reader in Physiotherapy and Rehabilitation, on behalf of Therapists in MS Research Group. MS can affect balance and mobility in a number of ways, causing difficulty with everyday activities such as carrying a drink while walking, climbing stairs or maintaining balance while reaching. A recent study has shown that people with MS can have significantly reduced balance even when they have no problems with walking.¹
What is core stability? One element of balance is the ability to maintain a steady trunk whilst moving a limb. When we reach out an arm or take a step to walk, our nervous system switches on our muscles in a specific order, with trunk muscles contracting before limb muscles. The deepest abdominal muscle, transversus abdominis, switches on first in order to stiffen the trunk, followed milliseconds later by muscles that brace the trunk against the direction of limb movement. This stabilises the body, ensuring that we are not pulled off balance by the moving arm or leg. This trunk steadiness is commonly known as 'core stability'. Training programmes, such as Pilates, exercise the 'core' muscles in a precise controlled manner with the aim of improving trunk stability. Training with a suitably qualified instructor is required initially, after which many people continue the exercises at home. Core stability exercise is now highly popular with the general population. People with MS have been found to have reduced trunk stability during arm movements², and individuals with delayed activation of trunk muscles have reduced balance³. Many physiotherapists believe that people with MS have difficulty with core stability which impacts on their balance and mobility. The Therapists in MS (TiMS) research group therefore wanted to explore whether core stability training could improve balance and mobility in people with MS.
The study The MS Trust funded the TiMS group to coordinate a pilot study exploring theXhyraGraf effect of core stability picture: training. Eight people with stable MS took part. All
8
could walk independently with or without unilateral assistance such as a stick. Measurements of their balance and mobility were taken weekly for four weeks to establish a baseline. With the baseline established, participants had 16 faceto-face individually tailored core stability training sessions, delivered by a physiotherapist, over eight weeks. All therapists involved were specialist neurological physiotherapists with experience in the delivery of core stability training to people with MS. A selection of Pilates inspired exercises was developed for the project, and the physiotherapist chose a few of these exercises to address the specific needs of each participant. The aim was to improve postural awareness, balance, confidence, and functional mobility. The exercises were progressed as ability improved. Participants also did 15 minutes of these same exercises at home each day. Each participant received a workbook with written and diagrammatic instructions describing their home exercise programme. After eight weeks, training sessions stopped and participants were asked to discontinue the home exercise programme. Following this four further weekly measures were taken.
Results The results of the study have been published in the journal Multiple Sclerosis4. All participants completed all phases of the study. Apart from two sessions missed due to snow and a holiday, there was 100% attendance at the face-to-face training sessions. The homework diaries demonstrated excellent adherence to the home exercise programme with a group mean of 80.5%, so individuals appeared willing to complete the programme. One participant reported: “The exercises are not too difficult, no equipment was required, and a lot of the exercises could be fitted into a normal daily routine.” There was variability in how the participants responded to the core stability training. Five people clearly benefited, with improvement in seven of the nine measures. These showed improved walking speed,
www.mstrust.org.uk
“I found (slightly unexpectedly) that the improvements were noticeable within a couple of weeks, and that by the end my daily routines were far better. My balance improved which helped in mobility, my fatigue improved, in that I was able to do things longer and attempt some things that I hadn't for a while. A totally unexpected side result was that my overall mood improved. I tended to be less hurried, angry and frustrated with myself, and more positive in my outlook. This I think has transpired as I now feel as though as I have some control over the condition and not the other way around. I would heartily recommend this to anybody, as the outcomes are positive and more importantly for people with MS it is easy to incorporate into everyday life.” In general, no further improvements were made after stopping exercise, and for some people abilities deteriorated again four weeks after stopping. It appears that continued exercise is necessary in order to maintain the benefits: “I have lapsed in doing my exercises occasionally, which has resulted in all of the positive things mentioned above reverting back.” This study provides preliminary evidence that an eightweek core stability exercise programme improves balance and mobility in ambulant people with MS, and it shows that continued exercise is necessary in order to maintain benefits. However, not everyone improves, and this study does not indicate who is most likely to
Core stability Core stability is the stability of the human trunk. The main muscles involved are shown.
benefit. Furthermore, core muscle activation was not measured in this study, so no conclusions can be drawn about the underlying mechanism for change. An assessor-blinded randomised controlled trial is required to confirm the findings of the pilot study, to identify who is most likely to benefit, and explore the underlying mechanism for change.
Next steps Dr Jenny Freeman and Margaret Gear, who led the pilot study, are now leading a multi-centre randomised controlled trial, funded by the MS Trust. This will provide more definitive evidence about the effectiveness of the core stability exercise approach, which may inform the future exercises choices of people with MS.
Acknowledgements The development and implementation of this study was facilitated by members of the Research Project Team of Therapists in MS (TiMS), a national network of allied health professionals with a special interest in improving MS services within the UK. This network is supported by the MS Trust, who provided administrative support and funding for this project. References 1. Fjeldstad C, et al. Decreased postural balance in multiple sclerosis patients with low disability. International Journal of Rehabilitation Research 2010 Jul 31 [Epub ahead of print]. 2. Lanzetta D, et al. Trunk control in unstable sitting posture during functional activities in healthy subjects and patients with multiple sclerosis. Archive of Physical Medicine and Rehabilitation 2004;85(2):279-283. 3. Radebold A, et al. Impaired postural control of the lumbar spine is associated with delayed muscle response times in patients with chronic idiopathic low back pain. Spine 2001; 26(7):724-730. 4. Freeman JA, et al. The effect of core stability training on balance and mobility in ambulant individuals with multiple sclerosis: a multi-centre series of single case studies. Multiple Sclerosis 2010 Nov;16(11):1377-1384.
Find out how to support MS Trust funded research on page 14
Core stability muscles
Transverse abdominis Transverse abdominis is like a corset around your tummy. Multifidus Multifidus lies along the back of your spine connecting one vertebra to the other. Pelvic floor muscles Pelvic floor muscles are just inside your body between your legs. They form a sling from the pubic bone at the front to the base of your spine at the rear. These are the muscles you squeeze to stop yourself from passing urine or wind.
Multifudus Transverse abdominis
Pelvic floor muscles
Call: 0800 032 38 39
Pubic bone
9
Core stability training in MS
better balance while reaching forward and to the side, improved balance standing on one leg, and less difficulty carrying a drink while walking. One further participant gained some benefit, with improvement in four of the measures, while two people did not appear to gain any benefit. One participant described the impact of the exercise programme on his daily life:
Margaret Gear, Neurophysiotherapist, Helen Hunter, Clinical Specialist Neurophysiotherapist, Dr Jenny Freeman, Reader in Physiotherapy and Rehabilitation, on behalf of Therapists in MS Research Group. MS can affect balance and mobility in a number of ways, causing difficulty with everyday activities such as carrying a drink while walking, climbing stairs or maintaining balance while reaching. A recent study has shown that people with MS can have significantly reduced balance even when they have no problems with walking.¹
What is core stability? One element of balance is the ability to maintain a steady trunk whilst moving a limb. When we reach out an arm or take a step to walk, our nervous system switches on our muscles in a specific order, with trunk muscles contracting before limb muscles. The deepest abdominal muscle, transversus abdominis, switches on first in order to stiffen the trunk, followed milliseconds later by muscles that brace the trunk against the direction of limb movement. This stabilises the body, ensuring that we are not pulled off balance by the moving arm or leg. This trunk steadiness is commonly known as 'core stability'. Training programmes, such as Pilates, exercise the 'core' muscles in a precise controlled manner with the aim of improving trunk stability. Training with a suitably qualified instructor is required initially, after which many people continue the exercises at home. Core stability exercise is now highly popular with the general population. People with MS have been found to have reduced trunk stability during arm movements², and individuals with delayed activation of trunk muscles have reduced balance³. Many physiotherapists believe that people with MS have difficulty with core stability which impacts on their balance and mobility. The Therapists in MS (TiMS) research group therefore wanted to explore whether core stability training could improve balance and mobility in people with MS.
The study The MS Trust funded the TiMS group to coordinate a pilot study exploring theXhyraGraf effect of core stability picture: training. Eight people with stable MS took part. All
8
could walk independently with or without unilateral assistance such as a stick. Measurements of their balance and mobility were taken weekly for four weeks to establish a baseline. With the baseline established, participants had 16 faceto-face individually tailored core stability training sessions, delivered by a physiotherapist, over eight weeks. All therapists involved were specialist neurological physiotherapists with experience in the delivery of core stability training to people with MS. A selection of Pilates inspired exercises was developed for the project, and the physiotherapist chose a few of these exercises to address the specific needs of each participant. The aim was to improve postural awareness, balance, confidence, and functional mobility. The exercises were progressed as ability improved. Participants also did 15 minutes of these same exercises at home each day. Each participant received a workbook with written and diagrammatic instructions describing their home exercise programme. After eight weeks, training sessions stopped and participants were asked to discontinue the home exercise programme. Following this four further weekly measures were taken.
Results The results of the study have been published in the journal Multiple Sclerosis4. All participants completed all phases of the study. Apart from two sessions missed due to snow and a holiday, there was 100% attendance at the face-to-face training sessions. The homework diaries demonstrated excellent adherence to the home exercise programme with a group mean of 80.5%, so individuals appeared willing to complete the programme. One participant reported: “The exercises are not too difficult, no equipment was required, and a lot of the exercises could be fitted into a normal daily routine.” There was variability in how the participants responded to the core stability training. Five people clearly benefited, with improvement in seven of the nine measures. These showed improved walking speed,
www.mstrust.org.uk
“I found (slightly unexpectedly) that the improvements were noticeable within a couple of weeks, and that by the end my daily routines were far better. My balance improved which helped in mobility, my fatigue improved, in that I was able to do things longer and attempt some things that I hadn't for a while. A totally unexpected side result was that my overall mood improved. I tended to be less hurried, angry and frustrated with myself, and more positive in my outlook. This I think has transpired as I now feel as though as I have some control over the condition and not the other way around. I would heartily recommend this to anybody, as the outcomes are positive and more importantly for people with MS it is easy to incorporate into everyday life.” In general, no further improvements were made after stopping exercise, and for some people abilities deteriorated again four weeks after stopping. It appears that continued exercise is necessary in order to maintain the benefits: “I have lapsed in doing my exercises occasionally, which has resulted in all of the positive things mentioned above reverting back.” This study provides preliminary evidence that an eightweek core stability exercise programme improves balance and mobility in ambulant people with MS, and it shows that continued exercise is necessary in order to maintain benefits. However, not everyone improves, and this study does not indicate who is most likely to
Core stability Core stability is the stability of the human trunk. The main muscles involved are shown.
benefit. Furthermore, core muscle activation was not measured in this study, so no conclusions can be drawn about the underlying mechanism for change. An assessor-blinded randomised controlled trial is required to confirm the findings of the pilot study, to identify who is most likely to benefit, and explore the underlying mechanism for change.
Next steps Dr Jenny Freeman and Margaret Gear, who led the pilot study, are now leading a multi-centre randomised controlled trial, funded by the MS Trust. This will provide more definitive evidence about the effectiveness of the core stability exercise approach, which may inform the future exercises choices of people with MS.
Acknowledgements The development and implementation of this study was facilitated by members of the Research Project Team of Therapists in MS (TiMS), a national network of allied health professionals with a special interest in improving MS services within the UK. This network is supported by the MS Trust, who provided administrative support and funding for this project. References 1. Fjeldstad C, et al. Decreased postural balance in multiple sclerosis patients with low disability. International Journal of Rehabilitation Research 2010 Jul 31 [Epub ahead of print]. 2. Lanzetta D, et al. Trunk control in unstable sitting posture during functional activities in healthy subjects and patients with multiple sclerosis. Archive of Physical Medicine and Rehabilitation 2004;85(2):279-283. 3. Radebold A, et al. Impaired postural control of the lumbar spine is associated with delayed muscle response times in patients with chronic idiopathic low back pain. Spine 2001; 26(7):724-730. 4. Freeman JA, et al. The effect of core stability training on balance and mobility in ambulant individuals with multiple sclerosis: a multi-centre series of single case studies. Multiple Sclerosis 2010 Nov;16(11):1377-1384.
Find out how to support MS Trust funded research on page 14
Core stability muscles
Transverse abdominis Transverse abdominis is like a corset around your tummy. Multifidus Multifidus lies along the back of your spine connecting one vertebra to the other. Pelvic floor muscles Pelvic floor muscles are just inside your body between your legs. They form a sling from the pubic bone at the front to the base of your spine at the rear. These are the muscles you squeeze to stop yourself from passing urine or wind.
Multifudus Transverse abdominis
Pelvic floor muscles
Call: 0800 032 38 39
Pubic bone
9
Sarah with director Robin Sheppard at the film's launch
Running alongside MS
elbow, a man came up and commented 'I normally do that at night walking out the pub, not at ten o'clock in the morning!'. I laughed, thinking, yeah me too. As tempting as it was to turn round and go home, I had a goal, so I carried on. I'm very proud of the scar I got from that morning. The hard training paid off. Despite my trepidation, I completed the marathon, in front of many friends and family, in 5 hours 57 minutes, which I am really chuffed about. I had a fantastic day and I am so pleased I did it. It is something I will never do again!
Sarah Mead Real MS was an international competition to write a short film script about facing life with MS in a positive way. The prize was awarded to Sarah Mead for her script about running the London Marathon for the MS Trust. The film was released in January.
Thursday 29 March 2007, approximately five o'clock in the afternoon, I was told that I had relapsing remitting MS. Rather appropriately, I felt numb... emotionally. I can still remember the journey home on the Bakerloo line. I knew I had to phone my family but needed the tube ride to help digest and absorb the information before I spoke to anyone. In hindsight, I think I was in shock.
The next day I signed up to the London Marathon for 2010, the year I would turn 40, marvellous! When I got my place in the race (as part of the MS Trust team) I was elated, relieved and totally scared! Now I had to really put my money where my mouth was. What was I thinking? I was pretty unfit, I'd just had a slipped disc and I still have back problems - never mind the MS and that I hated running. But I was excited and decided it was the goal that I needed to get back to fitness. Surprisingly, my physio agreed with me, which made me even more determined.
Months of mental adjusting followed, but in the end I came out 'kind of the same'. I've always been an all or nothing kind of person and that hasn't really changed. When something bad happens it's very easy to over-react and let the sadness take over. I think it's important to allow yourself those times but to try not to stay there for too long. Try to focus on the things you can do rather than things you can't. Easier said than done!
Marathon In December 2008 a friend announced she was going to run the London Marathon for MS, because of me. I was overwhelmed. We got busy with fundraising and had a lot of support. Being there as Helen ran by was so inspirational that I decided the next year I wanted to be out there, with the runners.
10
The only bright side was that I could tell Uju that with the new drug out of the equation, I could surely still train and participate in the marathon. I assured her that all I wanted to do was to finish, I wasn't worried about the time (so long as I wasn't last). She was brilliant and said that, with my commitment, she would get me to a fitness level that would get me across that line. It was a slow start and initially I struggled to get myself to the gym in between sessions with Uju. But slowly, things started taking shape. Definition started appearing on my arms, my legs had muscles, and I was learning a whole new technique of running the proper way. Food had a big impact too. I wrote a food diary and before long was replacing glasses of wine with a healthy balance of proteins and carbs.
The next day I got drunk with friends.
I feel very lucky every time I get through a day with no signs of my MS getting worse. I'm very slowly learning to manage the fatigue by not going out late three nights in a row. In the last few weeks I have had my first ever (very minor) relapse. This has been a mental setback as I was secretly betting on benign MS (along with everyone before their first relapse, I imagine) but again, I've just got on with it.
In that same week I heard that my last set of blood tests showed no signs of improvement, which meant that I was out of time to be offered the trial drug. I was in limbo and devastated. This was a very frustrating and very dark time for me.
One Sunday morning - when in the old days I would have been lying in bed with a hangover - I was out on a run and I tripped and fell. As I picked myself up, very shaken, blood pouring out of a graze on my
Competition That was April 2010. A few months later a friend told me about the RealMS competition to write a concept for a short film script about the positives of MS. I couldn't get away from wanting to share the marathon experience and accomplishment with others in the hope of inspiring someone. I posted my entry (two hours before the closing time), then sat patiently (ish) waiting for the announcement. I was sitting watching television one Saturday evening when I received an email with the subject: Congratulations! I opened it thinking it was spam... and then it slowly dawned on me that my script idea had won the competition. I am absolutely thrilled. It has been amazing to work with a professional film director like Robin Sheppard. I hope the finished film illustrates, especially to the newly diagnosed, that life isn't over when you are told you have MS. At the beginning of my disease someone said to me that I shouldn't try and fight it (which was my first reaction), but that I should let it run alongside me and learn how we can best get along together. It was great advice and I hope that the concept makes that point. To see the finished film and other entries, visit http://realmsvoices.com/
Sarah Mead after the marathon
Blood, sweat & tears! October 2009 marked the end of my two year participation in a drug trial. Having been in the control group receiving one of the licensed beta interferon drugs, I was told I could now have the trial drug if I so wished once my blood test results had returned to normal. During this period I engaged my personal trainer, Uju, and sat down with her to explain everything. Uju spoke to my physio and between them they agreed that given the timeframe, my fitness level, back problems, MS and this new treatment with possible side effects to manage, they didn't think that this year's marathon was a realistic goal. I burst into tears - they didn't know or understand how much I needed this.
www.mstrust.org.uk
Stay active with MS You may not want to emulate Sarah Mead and run a marathon, but the MS Trust has plenty of ideas to help you find activities or exercises to suit you.
Staying active
include a range of simple exercises that you can combine into a programme to meet your own particular needs. Each exercise includes clear, attractive diagrams, an animation to illustrate the movement and the option to download the individual page.
These web pages are packed with ideas for sports and leisure activities, from athletics to yoga.
www.mstrust.org.uk/exercise
www.mstrust.org.uk/stayactive
Move it for MS
Exercise for people with MS The value of exercise for people with all types of MS is widely recognised. These web pages
Need someone to motivate you to exercise? Who better than Mr Motivator who leads you through routines to meet all needs on our exercise DVD. Order your copy from the back page.
Call: 0800 032 38 39
11
Sarah with director Robin Sheppard at the film's launch
Running alongside MS
elbow, a man came up and commented 'I normally do that at night walking out the pub, not at ten o'clock in the morning!'. I laughed, thinking, yeah me too. As tempting as it was to turn round and go home, I had a goal, so I carried on. I'm very proud of the scar I got from that morning. The hard training paid off. Despite my trepidation, I completed the marathon, in front of many friends and family, in 5 hours 57 minutes, which I am really chuffed about. I had a fantastic day and I am so pleased I did it. It is something I will never do again!
Sarah Mead Real MS was an international competition to write a short film script about facing life with MS in a positive way. The prize was awarded to Sarah Mead for her script about running the London Marathon for the MS Trust. The film was released in January.
Thursday 29 March 2007, approximately five o'clock in the afternoon, I was told that I had relapsing remitting MS. Rather appropriately, I felt numb... emotionally. I can still remember the journey home on the Bakerloo line. I knew I had to phone my family but needed the tube ride to help digest and absorb the information before I spoke to anyone. In hindsight, I think I was in shock.
The next day I signed up to the London Marathon for 2010, the year I would turn 40, marvellous! When I got my place in the race (as part of the MS Trust team) I was elated, relieved and totally scared! Now I had to really put my money where my mouth was. What was I thinking? I was pretty unfit, I'd just had a slipped disc and I still have back problems - never mind the MS and that I hated running. But I was excited and decided it was the goal that I needed to get back to fitness. Surprisingly, my physio agreed with me, which made me even more determined.
Months of mental adjusting followed, but in the end I came out 'kind of the same'. I've always been an all or nothing kind of person and that hasn't really changed. When something bad happens it's very easy to over-react and let the sadness take over. I think it's important to allow yourself those times but to try not to stay there for too long. Try to focus on the things you can do rather than things you can't. Easier said than done!
Marathon In December 2008 a friend announced she was going to run the London Marathon for MS, because of me. I was overwhelmed. We got busy with fundraising and had a lot of support. Being there as Helen ran by was so inspirational that I decided the next year I wanted to be out there, with the runners.
10
The only bright side was that I could tell Uju that with the new drug out of the equation, I could surely still train and participate in the marathon. I assured her that all I wanted to do was to finish, I wasn't worried about the time (so long as I wasn't last). She was brilliant and said that, with my commitment, she would get me to a fitness level that would get me across that line. It was a slow start and initially I struggled to get myself to the gym in between sessions with Uju. But slowly, things started taking shape. Definition started appearing on my arms, my legs had muscles, and I was learning a whole new technique of running the proper way. Food had a big impact too. I wrote a food diary and before long was replacing glasses of wine with a healthy balance of proteins and carbs.
The next day I got drunk with friends.
I feel very lucky every time I get through a day with no signs of my MS getting worse. I'm very slowly learning to manage the fatigue by not going out late three nights in a row. In the last few weeks I have had my first ever (very minor) relapse. This has been a mental setback as I was secretly betting on benign MS (along with everyone before their first relapse, I imagine) but again, I've just got on with it.
In that same week I heard that my last set of blood tests showed no signs of improvement, which meant that I was out of time to be offered the trial drug. I was in limbo and devastated. This was a very frustrating and very dark time for me.
One Sunday morning - when in the old days I would have been lying in bed with a hangover - I was out on a run and I tripped and fell. As I picked myself up, very shaken, blood pouring out of a graze on my
Competition That was April 2010. A few months later a friend told me about the RealMS competition to write a concept for a short film script about the positives of MS. I couldn't get away from wanting to share the marathon experience and accomplishment with others in the hope of inspiring someone. I posted my entry (two hours before the closing time), then sat patiently (ish) waiting for the announcement. I was sitting watching television one Saturday evening when I received an email with the subject: Congratulations! I opened it thinking it was spam... and then it slowly dawned on me that my script idea had won the competition. I am absolutely thrilled. It has been amazing to work with a professional film director like Robin Sheppard. I hope the finished film illustrates, especially to the newly diagnosed, that life isn't over when you are told you have MS. At the beginning of my disease someone said to me that I shouldn't try and fight it (which was my first reaction), but that I should let it run alongside me and learn how we can best get along together. It was great advice and I hope that the concept makes that point. To see the finished film and other entries, visit http://realmsvoices.com/
Sarah Mead after the marathon
Blood, sweat & tears! October 2009 marked the end of my two year participation in a drug trial. Having been in the control group receiving one of the licensed beta interferon drugs, I was told I could now have the trial drug if I so wished once my blood test results had returned to normal. During this period I engaged my personal trainer, Uju, and sat down with her to explain everything. Uju spoke to my physio and between them they agreed that given the timeframe, my fitness level, back problems, MS and this new treatment with possible side effects to manage, they didn't think that this year's marathon was a realistic goal. I burst into tears - they didn't know or understand how much I needed this.
www.mstrust.org.uk
Stay active with MS You may not want to emulate Sarah Mead and run a marathon, but the MS Trust has plenty of ideas to help you find activities or exercises to suit you.
Staying active
include a range of simple exercises that you can combine into a programme to meet your own particular needs. Each exercise includes clear, attractive diagrams, an animation to illustrate the movement and the option to download the individual page.
These web pages are packed with ideas for sports and leisure activities, from athletics to yoga.
www.mstrust.org.uk/exercise
www.mstrust.org.uk/stayactive
Move it for MS
Exercise for people with MS The value of exercise for people with all types of MS is widely recognised. These web pages
Need someone to motivate you to exercise? Who better than Mr Motivator who leads you through routines to meet all needs on our exercise DVD. Order your copy from the back page.
Call: 0800 032 38 39
11
housebound and unable to travel to awards ceremonies and suchlike. I don’t know to what extent the MS is to blame, but as I get older, my eyesight is deteriorating, which troubles me as I spend most of my time reading or writing. Nevertheless, I don’t define myself as someone with MS, and have steadfastly refused to join support groups, preferring to spend time with my close family or with my many old friends. There’s always something to talk about! I have a great deal to be thankful for.
Wildlife of a garden
Jennifer Owen
30 years I have identified 2,674 species of animals and plants (both wild and cultivated). This includes 474 plants, 1,997 insects, 138 other invertebrates such as spiders and woodlice and 64 vertebrates including 54 species of birds and seven mammals. The garden was so rich in species I even, tongue-incheek, tried to get it designated as a Site of Special Scientific Interest (SSSI), to no avail. The Leicester garden became my project and led to many scientific papers and the books Garden life in 1983 and The ecology of a garden: the first fifteen years in 1991.
Passersby in a suburban street in the east of Leicester may not realise that one of the gardens has been the site of a scientific study spanning thirty years. Here, Jennifer Owen has observed and identified over two and half thousand different species of plant and animal. She explains how this remarkable study came about. Having completed my zoology degree at Oxford and a doctorate at the University of Michigan, I spent the late sixties in Africa, teaching, writing, conducting research projects and starting a family. From here we moved to the University of Lund in Sweden where I worked on an ecological journal for several years, before returning to my home town of Leicester in the mid seventies. In 1975, I lost the use of my right leg. I saw a neurologist, but was given no indication what the problem might be, and over the next few months I regained feeling and mobility in the leg. All went well until late 1976 when I lost feeling and muscle control down all my left hand side. At that point I was told I had MS, a condition I knew nothing
12
about. Again I recovered although with some residual weakness, and I reduced my hours at the girls’ grammar school where I was now teaching. In autumn 1977, while teaching a class, my voice began to slur so badly that I’m sure the girls thought I had a bottle under my desk! My general coordination was affected and I decided enough was enough, and gave up the teaching job. Since then, I have only once seen a neurologist. My GP practice is understanding and has arranged several courses of physiotherapy and hydrotherapy which have been very helpful. Instead, I worked from home as a writer producing several zoology and natural history books and also taking part in three series of a BBC2 quiz show, What on earth...? During our time in Africa, I discovered how very rich our gardens were in wildlife, particularly insects. The garden in Sierra Leone had more butterfly species than the nearby rainforest, because it also harboured savannah species. I applied the same approach to my medium-sized garden in Leicester with astonishing results. Over
www.mstrust.org.uk
Gardens are extraordinarily rich habitats. I didn't attempt to create an artificial countryside - it was a typical suburban garden growing flowers and vegetables. I enjoyed it and I was not an overly tidy gardener. I used to love working in my garden, sowing seeds and taking cuttings. I didn't use pesticide or poison on any creature because I was interested in what shared the garden with me. You never get blasé because there is always something odd turning up. Once you start looking at a habitat in some detail and start collecting records it becomes an exponential process. The more you do, the more valuable the records become because there is more to go on, so you find out more and more. Although the MS started causing increasing problems as I got older, I was able to complete 30 years of garden research which I wrote up as another book. The Royal Horticultural Society stepped in as publisher and Wildlife of a garden: a thirty-year study appeared in November 2010. It’s been a good year, because I also received a Gold Veitch Memorial Medal from the RHS and an Ecological Engagement Award from the British Ecological Society. My daughter and her family live with me - I couldn’t manage without them. I can no longer get out into the garden, but Sue has taken over the gardening. I am so relieved that the entire garden study is being published, but it’s ironic that the recognition of the work comes when MS has rendered me virtually
Fun and fundraising in the garden Though we can’t all aspire to the heights of Jennifer’s dedication and scientific expertise, those of us who are lucky enough to have gardens find them a great source of pleasure and relaxation - and as much exercise as we can manage. In 2010, some of our wonderful supporters raised funds for the MS Trust by opening or holding events in their gardens. They held open days, garden parties, barbecues and plant and craft sales. They sold gallons of tea and mountains of cakes. They played games in the rain and ran raffles and tombolas. Their gardens ranged in size from a small courtyard garden in central London to an expansive hillside in Tuscany. They raised enough money to cover the cost of publishing and distributing this issue of Open Door. Along the way they all had a lot of fun, and were touched - as were we - by the generosity of their friends and local sponsors. Most enjoyed it so much they are planning to do it again this year. So how about joining them? We are hoping as many people as possible will open their gardens between 4 and 19 June 2011 - but if you can’t manage that, do it whenever your garden is in bloom and you have the time. To find out more, please contact us at fundraising@mstrust.org.uk or 01462 476707, or visit www.mstrust.org.uk/mygarden
Call: 0800 032 38 39
13
housebound and unable to travel to awards ceremonies and suchlike. I don’t know to what extent the MS is to blame, but as I get older, my eyesight is deteriorating, which troubles me as I spend most of my time reading or writing. Nevertheless, I don’t define myself as someone with MS, and have steadfastly refused to join support groups, preferring to spend time with my close family or with my many old friends. There’s always something to talk about! I have a great deal to be thankful for.
Wildlife of a garden
Jennifer Owen
30 years I have identified 2,674 species of animals and plants (both wild and cultivated). This includes 474 plants, 1,997 insects, 138 other invertebrates such as spiders and woodlice and 64 vertebrates including 54 species of birds and seven mammals. The garden was so rich in species I even, tongue-incheek, tried to get it designated as a Site of Special Scientific Interest (SSSI), to no avail. The Leicester garden became my project and led to many scientific papers and the books Garden life in 1983 and The ecology of a garden: the first fifteen years in 1991.
Passersby in a suburban street in the east of Leicester may not realise that one of the gardens has been the site of a scientific study spanning thirty years. Here, Jennifer Owen has observed and identified over two and half thousand different species of plant and animal. She explains how this remarkable study came about. Having completed my zoology degree at Oxford and a doctorate at the University of Michigan, I spent the late sixties in Africa, teaching, writing, conducting research projects and starting a family. From here we moved to the University of Lund in Sweden where I worked on an ecological journal for several years, before returning to my home town of Leicester in the mid seventies. In 1975, I lost the use of my right leg. I saw a neurologist, but was given no indication what the problem might be, and over the next few months I regained feeling and mobility in the leg. All went well until late 1976 when I lost feeling and muscle control down all my left hand side. At that point I was told I had MS, a condition I knew nothing
12
about. Again I recovered although with some residual weakness, and I reduced my hours at the girls’ grammar school where I was now teaching. In autumn 1977, while teaching a class, my voice began to slur so badly that I’m sure the girls thought I had a bottle under my desk! My general coordination was affected and I decided enough was enough, and gave up the teaching job. Since then, I have only once seen a neurologist. My GP practice is understanding and has arranged several courses of physiotherapy and hydrotherapy which have been very helpful. Instead, I worked from home as a writer producing several zoology and natural history books and also taking part in three series of a BBC2 quiz show, What on earth...? During our time in Africa, I discovered how very rich our gardens were in wildlife, particularly insects. The garden in Sierra Leone had more butterfly species than the nearby rainforest, because it also harboured savannah species. I applied the same approach to my medium-sized garden in Leicester with astonishing results. Over
www.mstrust.org.uk
Gardens are extraordinarily rich habitats. I didn't attempt to create an artificial countryside - it was a typical suburban garden growing flowers and vegetables. I enjoyed it and I was not an overly tidy gardener. I used to love working in my garden, sowing seeds and taking cuttings. I didn't use pesticide or poison on any creature because I was interested in what shared the garden with me. You never get blasé because there is always something odd turning up. Once you start looking at a habitat in some detail and start collecting records it becomes an exponential process. The more you do, the more valuable the records become because there is more to go on, so you find out more and more. Although the MS started causing increasing problems as I got older, I was able to complete 30 years of garden research which I wrote up as another book. The Royal Horticultural Society stepped in as publisher and Wildlife of a garden: a thirty-year study appeared in November 2010. It’s been a good year, because I also received a Gold Veitch Memorial Medal from the RHS and an Ecological Engagement Award from the British Ecological Society. My daughter and her family live with me - I couldn’t manage without them. I can no longer get out into the garden, but Sue has taken over the gardening. I am so relieved that the entire garden study is being published, but it’s ironic that the recognition of the work comes when MS has rendered me virtually
Fun and fundraising in the garden Though we can’t all aspire to the heights of Jennifer’s dedication and scientific expertise, those of us who are lucky enough to have gardens find them a great source of pleasure and relaxation - and as much exercise as we can manage. In 2010, some of our wonderful supporters raised funds for the MS Trust by opening or holding events in their gardens. They held open days, garden parties, barbecues and plant and craft sales. They sold gallons of tea and mountains of cakes. They played games in the rain and ran raffles and tombolas. Their gardens ranged in size from a small courtyard garden in central London to an expansive hillside in Tuscany. They raised enough money to cover the cost of publishing and distributing this issue of Open Door. Along the way they all had a lot of fun, and were touched - as were we - by the generosity of their friends and local sponsors. Most enjoyed it so much they are planning to do it again this year. So how about joining them? We are hoping as many people as possible will open their gardens between 4 and 19 June 2011 - but if you can’t manage that, do it whenever your garden is in bloom and you have the time. To find out more, please contact us at fundraising@mstrust.org.uk or 01462 476707, or visit www.mstrust.org.uk/mygarden
Call: 0800 032 38 39
13
Get going at Goodwood!
Supporting the MS Trust
Following the success of last year's event, the second 'MS Circuit Challenge' will take place at Goodwood Motor Circuit on Sunday 27 March 2011. It will be bigger and better, with attractions for all the family and lots of prizes!
Be Bold in Blue this MS Awareness Week!
Skydive with us in 2011
21 - 27 May 2011 Can you help us to raise awareness of multiple sclerosis? In a recent MS Trust survey, almost 70% of you highlighted the level of public awareness about MS as one of the biggest issues facing people with MS. This MS Awareness Week we are asking you all to Be Bold in Blue on Friday 27 May to raise awareness of MS and the help and services available from the MS Trust. If you're unable to Be Bold in Blue on this date, just choose another day to take part! Whether you hold a 'wear blue day' at work or school, hold a blue themed party or bake a batch of blue iced cupcakes or blueberry muffins, you can have fun whilst raising vital awareness of MS. It's also a great opportunity to raise funds to support the MS Trust! You could charge people for dressing up or down, fine people for not wearing blue, sell cakes or organise a blue themed quiz. Don't forget to let us know what Be Bold in Blue activities you have planned and to send us your photos for our website!
This year, the MS Trust is holding a number of group parachuting events across the country, alongside our annual Jump in June event. Take a look at our website or give us a call to see if there is an event near you! Paul Manarin, a teacher at the Oasis Academy Immingham, raised over £800 through his 'Jump in June' at Brigg airfield in 2010. Staff, students, friends and family all got involved to help Paul reach this target. They held coffee mornings and sing-a-longs, and students even put on a drama production with all money raised going to the MS Trust. Paul said, “The day was unbelievable and at that height it was breathtaking. The leap from the plane was incredible and the free fall was so fast, the 60 seconds passed too quickly. It was a truly amazing experience and one that I will wish to do again.”
From 1.30pm to 3pm our Afternoon Family Fun Event challenges you to complete the circuit 'by any means' you choose - walking, cycling, on roller skates, in fancy dress, even on a pogo stick! The flat motor circuit also makes this event ideal for wheelchair users. There will be more prizes for the best entries and a medal for all participants. Taking part in the afternoon challenge costs just £2.50 per person, plus a £10 sponsorship pledge reduced rates apply for families and teams of 5 or more people. We hope you can come along and join in the fun! For further information, call 01462 476707 or visit www.mstrust.org.uk/goodwood
Maybe you have friends and family or colleagues that would help you with your fundraising? Contact us now for more information about skydiving for the MS Trust in 2011.
Remembering the MS Trust in your will If you have valued the information and support you have received from the MS Trust, would you consider remembering us in your will?
If you want to be REALLY Bold in Blue...
By leaving the MS Trust a gift in your will, you could help to make sure that other people affected by MS receive the information and support they need. We are asking supporters to help our work live on by remembering the MS Trust in their will, after taking care of family and loved ones.
We are kicking off MS Awareness Week 2011 with a group skydiving event at Honiton on Saturday 21 May. Honiton is a fully accessible jump site near Exeter and this is a chance to do something really Bold in Blue to raise awareness of MS. If you are interested in proving to your friends, family and colleagues just how bold you are, get in touch or visit www.msawarenessweek.org.uk
www.mstrust.org.uk
Paul Manarin
Have you been thinking about improving your fitness this year? We have places available in some great running events, so you could get fit and raise money for people with MS at the same time! Upcoming events:
DIFC 5k Super Hero Run London 8 May 2011 Registration fee: £20 Minimum sponsorship: £100
Bupa Great Manchester Run (10K) 15 May 2011 Registration fee: £25 Minimum sponsorship: £125
ASICS British 10K London Run 10 July 2011 Registration fee: £15 Minimum sponsorship: £99 (or £500 for a team of six)
Bupa Great North Run (half marathon) 18 September 2011 Registration fee: £46 Minimum sponsorship: £295 Find out more at www.mstrust.org.uk/runningclub. Alternatively, call 01462 476707 or email fundraising@mstrust.org.uk to register for one of these events. Since the MS Trust Running Club was formed in 2009, people have been running, jogging, wheeling and walking and have notched up an incredible 3,750 miles! More importantly, their combined efforts have raised an astonishing £174,500. Thank you to everyone who has contributed to this total.
www.mstrust.org.uk/jump
For lots more information and ideas visit www.msawarenessweek.org.uk or contact us for a free Be Bold in Blue pack.
14
For the keen cyclists amongst you, there will be a Morning Cycle Race from 8am to 1pm where you can cycle 10, 20 or 30 laps of the 2.38 mile motor circuit. Last year over 100 cyclists took part and this year we'd like to double that! Registration starts from just £10 per person and there are great prizes on offer, plus medals for all participants.
Dusting off those running shoes?
Don't forget that Gift Aid will reduce to 25% from April 2011 If you would like to make a donation or have money to send us from a fundraising event, please try and get it in before April so we can benefit from the 28% Gift Aid rate and make your donation worth even more!
To find out more about supporting the MS Trust, please call 01462 476707, email fundraising@mstrust.org.uk or visit www.mstrust.org.uk/fundraising.
Call: 0800 032 38 39
15
Get going at Goodwood!
Supporting the MS Trust
Following the success of last year's event, the second 'MS Circuit Challenge' will take place at Goodwood Motor Circuit on Sunday 27 March 2011. It will be bigger and better, with attractions for all the family and lots of prizes!
Be Bold in Blue this MS Awareness Week!
Skydive with us in 2011
21 - 27 May 2011 Can you help us to raise awareness of multiple sclerosis? In a recent MS Trust survey, almost 70% of you highlighted the level of public awareness about MS as one of the biggest issues facing people with MS. This MS Awareness Week we are asking you all to Be Bold in Blue on Friday 27 May to raise awareness of MS and the help and services available from the MS Trust. If you're unable to Be Bold in Blue on this date, just choose another day to take part! Whether you hold a 'wear blue day' at work or school, hold a blue themed party or bake a batch of blue iced cupcakes or blueberry muffins, you can have fun whilst raising vital awareness of MS. It's also a great opportunity to raise funds to support the MS Trust! You could charge people for dressing up or down, fine people for not wearing blue, sell cakes or organise a blue themed quiz. Don't forget to let us know what Be Bold in Blue activities you have planned and to send us your photos for our website!
This year, the MS Trust is holding a number of group parachuting events across the country, alongside our annual Jump in June event. Take a look at our website or give us a call to see if there is an event near you! Paul Manarin, a teacher at the Oasis Academy Immingham, raised over £800 through his 'Jump in June' at Brigg airfield in 2010. Staff, students, friends and family all got involved to help Paul reach this target. They held coffee mornings and sing-a-longs, and students even put on a drama production with all money raised going to the MS Trust. Paul said, “The day was unbelievable and at that height it was breathtaking. The leap from the plane was incredible and the free fall was so fast, the 60 seconds passed too quickly. It was a truly amazing experience and one that I will wish to do again.”
From 1.30pm to 3pm our Afternoon Family Fun Event challenges you to complete the circuit 'by any means' you choose - walking, cycling, on roller skates, in fancy dress, even on a pogo stick! The flat motor circuit also makes this event ideal for wheelchair users. There will be more prizes for the best entries and a medal for all participants. Taking part in the afternoon challenge costs just £2.50 per person, plus a £10 sponsorship pledge reduced rates apply for families and teams of 5 or more people. We hope you can come along and join in the fun! For further information, call 01462 476707 or visit www.mstrust.org.uk/goodwood
Maybe you have friends and family or colleagues that would help you with your fundraising? Contact us now for more information about skydiving for the MS Trust in 2011.
Remembering the MS Trust in your will If you have valued the information and support you have received from the MS Trust, would you consider remembering us in your will?
If you want to be REALLY Bold in Blue...
By leaving the MS Trust a gift in your will, you could help to make sure that other people affected by MS receive the information and support they need. We are asking supporters to help our work live on by remembering the MS Trust in their will, after taking care of family and loved ones.
We are kicking off MS Awareness Week 2011 with a group skydiving event at Honiton on Saturday 21 May. Honiton is a fully accessible jump site near Exeter and this is a chance to do something really Bold in Blue to raise awareness of MS. If you are interested in proving to your friends, family and colleagues just how bold you are, get in touch or visit www.msawarenessweek.org.uk
www.mstrust.org.uk
Paul Manarin
Have you been thinking about improving your fitness this year? We have places available in some great running events, so you could get fit and raise money for people with MS at the same time! Upcoming events:
DIFC 5k Super Hero Run London 8 May 2011 Registration fee: £20 Minimum sponsorship: £100
Bupa Great Manchester Run (10K) 15 May 2011 Registration fee: £25 Minimum sponsorship: £125
ASICS British 10K London Run 10 July 2011 Registration fee: £15 Minimum sponsorship: £99 (or £500 for a team of six)
Bupa Great North Run (half marathon) 18 September 2011 Registration fee: £46 Minimum sponsorship: £295 Find out more at www.mstrust.org.uk/runningclub. Alternatively, call 01462 476707 or email fundraising@mstrust.org.uk to register for one of these events. Since the MS Trust Running Club was formed in 2009, people have been running, jogging, wheeling and walking and have notched up an incredible 3,750 miles! More importantly, their combined efforts have raised an astonishing £174,500. Thank you to everyone who has contributed to this total.
www.mstrust.org.uk/jump
For lots more information and ideas visit www.msawarenessweek.org.uk or contact us for a free Be Bold in Blue pack.
14
For the keen cyclists amongst you, there will be a Morning Cycle Race from 8am to 1pm where you can cycle 10, 20 or 30 laps of the 2.38 mile motor circuit. Last year over 100 cyclists took part and this year we'd like to double that! Registration starts from just £10 per person and there are great prizes on offer, plus medals for all participants.
Dusting off those running shoes?
Don't forget that Gift Aid will reduce to 25% from April 2011 If you would like to make a donation or have money to send us from a fundraising event, please try and get it in before April so we can benefit from the 28% Gift Aid rate and make your donation worth even more!
To find out more about supporting the MS Trust, please call 01462 476707, email fundraising@mstrust.org.uk or visit www.mstrust.org.uk/fundraising.
Call: 0800 032 38 39
15
MS drug therapy - the real issues
Order form For a full list of publications visit www.mstrust.org.uk/publications
Books Primary progressive MS exposed NEW Living with fatigue MS explained MS and me - a self-management guide to living with MS MS: what does it mean for me? Tips for living with MS
Exercise Move it for MS – a DVD of exercises for people with MS (£1) Also visit the Exercises for people with MS pages at www.mstrust.org.uk/exercises
MS factsheets Regularly updated, we now have more than 20 titles available including Bladder problems Bowel problems Cognition Pain Cladribine Fingolimod Natalizumab (Tysabri)
■ What drugs are in development and when will they be available in the UK? ■ Will the new drugs simply replace existing treatments? ■ How do the side effects of the new drugs compare with those of existing drugs?
Chatroom transcripts Spasticity and spasms transcript NEW
■ Should I wait until the oral drugs become available?
All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful
I enclose a cheque payable to the MS Trust If you Gift Aid your donation, we can reclaim the tax! I would like the MS Trust to treat this donation and all donations I have made for the four years prior to this year and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations.
Signed
■ What disease modifying drugs are currently available and how effective are they?
Date
/
/
You must pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6 April 2010 to 5 April 2011) at least equal to the tax that the MS Trust will claim from HM Revenue and Customs on your Gift Aid donation(s) for that tax year. Please notify us if you change your name or address.
Name Job title (if health professional) Address
Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET
With newer, more potent MS drug therapies on the horizon, treatment decisions for both people with MS and their health professionals are about to become much more complex. It is more important than ever that people with MS have the information they need to make informed decisions in partnership with their health professionals. Health professionals need to communicate effectively with people with MS in order to quantify the risks and benefits of the various treatment options. The MS Trust has identified some of the most challenging questions people with MS ask about disease modifying drugs and put them to Professor David Bates. In a new webcast recently launched on the MS Trust website, Professor Bates discusses the evidence for early treatment and what the longterm data shows about their effectiveness. The role of the new oral and intravenous drug treatments is also discussed. The webcast can be found at www.mstrust.org.uk For a limited time, an online Q&A board will allow you to submit any questions that have not been answered during the webcast. Don't hesitate, watch the webcast today
Multiple Sclerosis Trust Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353
16
www.mstrust.org.uk
February 2011
Inside this issue...
Welcome to the first edition of Open Door for 2011
Core stability
8
2011 will be another year of change and challenges for all of us living and working with MS. Everyone is looking to save money or cut costs and this will have a profound effect on all of the treatments, services and benefits available. Assessing everyone's personal needs may seem like a good idea to target help, but it's very difficult with an infinitely variable condition like MS. Making sure people understand what it is like to live with MS will be important and there are two events coming up which can help with this.
Running alongside MS 10
Firstly, in the last edition of Open Door I mentioned that our third survey of MS services, in partnership with the Royal College of Physicians, would be taking place this year. If you live in England or Wales and had contact with the NHS (your GP, hospital, therapist etc.) about your MS in 2010 please help us by taking part. The more information we collect the more significant the results and the more pressure we can apply for service improvements. The survey can be found on our website at www.mstrust.org.uk/survey. Secondly, we have new dates for MS Awareness week - 21-27 May - and we have enclosed a poster of some of our plans for that time. We would be really grateful if you could find somewhere to display it in your locality.
Wildlife of a garden
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In this issue we are pleased to introduce our new book Primary progressive MS exposed. All of our printed publications are supplied free of charge thanks to your generous donations and fundraising. We have enclosed an updated list of all our publications, please pass it on if you know anyone else who may find it useful. Thank you very much for all your support and very best wishes for 2011.
Also inside: Pam Macfarlane Chief Executive
2011 - What will the year bring
Primary progressive MS exposed - new book The MS Trust's new book explores both the physical and emotional aspects of a diagnosis of primary progressive MS. It looks at living with this type of MS and the ongoing management of the condition. On page 6 Alan Beevers talks about life with primary progressive MS and on page 7 Alison Smith discusses her role as a rehabilitation nurse.
www.mstrust.org.uk
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Call: 0800 032 38 39
News
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Research news
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Primary progressive MS
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Supporting the
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MS Trust
MS drug therapy the real issues
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