Information Service news
Order form For a full list of publications visit www.mstrust.org.uk/publications or order the Publication Leaflet
New factsheets Vitamin D
DVDs Move it for MS – a DVD of exercises for people with MS (£1) MS together
With increasing interest in the role of vitamin D both in the onset of multiple sclerosis and as a treatment, this factsheet covers some of the recent research.
Books At work with MS Living with fatigue MS and me - a self-management guide to living with MS NEW MS explained MS: what does it mean for me? Sexuality and MS: a guide for women Talking with your kids about MS NEW Kids’ guide to MS - for children aged 6-10 Young person’s guide to MS - for people aged 10-16
MS factsheets Regularly updated, we now have more than 20 titles available Bowel problems Oral drugs - cladribine / fingolimod Clinically isolated syndrome NEW Depression NEW Vitamin D NEW
Chatroom transcripts Fatigue transcript NEW
Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful
Depression Depression is an under-recognised and undertreated symptom in people with MS where half of all those diagnosed will be medically depressed at some time in the illness. This factsheet looks at the causes of depression and how it can be managed. Clinically isolated syndrome A first episode of neurological symptoms can be an indicator of what may turn out to be multiple sclerosis. In the absence of a second episode or of a definite diagnosis, this is referred to as clinically isolated syndrome (CIS). This new factsheet examines the typical presentations of CIS, different assessments that might be recommended, treatments for CIS and starting disease modifying drug therapy, and risk factors associated with CIS converting to MS. These factsheets and other MS Trust publications can also be downloaded from our website or read online at www.mstrust.org.uk/publications
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Sexuality and MS - a guide for men Sexual problems are rarely discussed symptoms of MS and many men are unaware of treatments that might be available and how to discuss what they are experiencing with their partner or with a health professional. Having published Sexuality and MS - a guide for women in 2007, the MS Trust is about to start work on an equivalent resource for men. To help us make the contents and design of the resource as helpful as possible, we are asking men to complete a brief, anonymous survey about the problems they have encountered and how the new resource might be best presented.
Name Job title (if health professional) Address
Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request
To request a survey, either write to the address below or visit www.mstrust.org.uk/men
Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET
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
May 2010
Inside this issue...
Welcome to the Spring Edition of Open Door
Yoga
8
The arrival of this Open Door should coincide with the General Election results and it will be interesting to see what challenges lie ahead for us all, as tackling the public finances deficit becomes a reality rather than a topic for debate. A recent survey via the MS Trust website asked 'what is your most valued source of support for your MS?' Along with close family, MS specialist nurses were top of the list. In 2001 a unique research project funded by the MS Trust at South Bank University London, demonstrated clearly the benefit of MS specialist nurses both to people with MS and in financial terms to the NHS. The research showed that having an MS specialist nurse in post could generate a net saving of over £64,000 in a year, purely from a reduction in admissions to hospital.
Bowel management
10
Gliding down
15
The MS Trust has campaigned since 1996 for MS specialist nurses. The number has grown from three to around 220, but this is still some 150 short of the number needed to support 100,000 people with MS. Yet once again MS nurse posts are under threat, easy targets for NHS cutbacks where short term gains outweigh long term benefits. MS Awareness week may have just ended, but raising awareness of the challenges of living with MS does not go away. MS nurses are a vital part of the support system, therefore the MS Trust will continue to campaign for MS nurses and support those in post, through information and education and by promoting the value of their role wherever possible. Very best wishes
Pam Macfarlane Chief Executive
Also inside: CCSVI
2
News
3
Research news
4 6
I Talking with your kids about MS
MS and me self-management
I Exercises for people with MS
MS Tissue Bank
12
Read more about these on pages 6 and 13
New from MS Trust
13
New from the MS Trust I MS and me - a guide to self-management
Wheelchair rambling 14 16
www.mstrust.org.uk
www.mstrust.org.uk
Call: 01462 476 700
Info Service news
16
Behind the headlines - CCSVI
News
Picture: Reigh LeBlanc
What’s the idea? Chronic cerebro-spinal venous insufficiency (CCSVI) is a theory proposed by Professor Paolo Zamboni, a vascular surgeon at the University of Ferrara in Italy. He suggests that an abnormal narrowing in veins taking blood from the brain causes a build up of iron which crosses the blood-brain barrier damaging cells in the central nervous system.
What’s happened so far? Prof Zamboni’s study found CCSVI in 95% of the 65 participants with MS, but not in a control group of healthy people and people with other neurological conditions.1
Dr Robert Zivadinov, leader of the Buffalo study, said, “We are three to five years away from the possible treatment options. Even with Prof Zamboni’s paper there was very little improvement in patients and it calls for caution - a reasonable approach.”4
Is treatment available? Some centres have begun to offer scanning and surgical treatment for CCSVI. Anecdotally, there are indications of initial improvements but in a number of cases symptoms and CCSVI seem to return and some people have had further operations.
What are the risks of treatment?
The first study to test this theory, based at the University of Buffalo, released results in February 2010. Scans of 500 people, including 280 with MS, showed CCSVI in 56.4% of the people with MS but also in 22.4% of the healthy controls.2 Full results were reported at the American Academy of Neurology meeting in April and further phases are ongoing.
In March, Stanford Medical Center suspended surgery after two people developed serious complications. A death from a brain haemorrhage, whilst not directly linked to the surgery, led to concerns about adequate evaluation of risks. A second person required open heart surgery after a jugular vein stent dislodged.
Whilst the prevalence of CCSVI is not as clear cut as in the original findings, the implications of the higher prevalence in people with MS requires further exploration. An international panel of neurologists, vascular surgeons and radiographers has been formed to review applications for funding for further studies.
Although these are the first complications to be reported, Dr Jeffrey Dunn, associate director of Stanford’s MS Center, warned, “Patients remain insufficiently aware of the active and serious risks.”4
Prof Zamboni has proposed that CCSVI can be treated with surgery. His review of 35 people with relapsing remitting MS found that 50% had no relapses in the year following surgery, compared to 27% in the period before undergoing the procedure. Results from 30 people with progressive forms of MS showed no significant change in cognitive and motor function.3
CCSVI needs further research and we would urge caution when considering investing in treatment that is based on as yet incomplete evidence. However, undergoing any treatment has to be a matter of personal choice, having weighed up the benefits and risks. If considering surgery, ask key questions such as, what will the surgery achieve and how can this be demonstrated; what is the experience of the surgeon; will more operations be necessary; and what level of support is available should there be complications?
What do the experts say? Prof Neil Scolding, Burden Professor of Clinical Neurosciences, Bristol and a trustee of the MS Trust, said, “The tissue changes seen under a microscope in MS do not suggest diseased veins and the effects of immune treatments would also be difficult to explain on this basis. Nonetheless it is quite right that further scientific testing is done to pursue these claims carefully.”
2
What’s the MS Trust view?
References 1. Zamboni P, et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. Journal of Neurology, Neurosurgery & Psychiatry 2009;80(4):392-399. 2. University of Buffalo press release - 10 February 2010. 3. Zamboni P, et al. A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency. Journal of Vascular Surgery 2009;50:1348-1358. 4. Experimental multiple sclerosis vascular shunting procedure halted at Stanford. Annals of Neurology 2010; 67(1):A13-15.
www.mstrust.org.uk
Specialist nurses can save NHS money
MS, to clarify the law. She and her husband wanted to know under what circumstances he would be prosecuted if he helped her travel abroad to die.
The Royal College of Nursing (RCN) has published a report that suggests the NHS could save money by investing in specialist nurses. The RCN surveyed almost 300 specialist nurses working in different conditions and settings. Amongst other findings it estimates that millions of pounds could be saved by treating MS relapses at home rather than in hospital.
Following several months of public consultation, the new guidelines centre on whether the individual has made a voluntary, clear and informed decision and whether the assistor was wholly motivated by compassion and does not stand to gain from the death.
The MS Trust has campaigned for specialist nurses for MS since the 1990s and was instrumental in saving a number of posts in the NHS’s financial crisis in 2006 through support to nurses and direct contact with NHS Trusts. The RCN report echoes research funded by the MS Trust in 2001 that found that by offering a more responsive and focussed service to people with MS, an MS nurse could lead to savings of £64,000 a year in hospital admissions alone.1 Further research looked at the treatment of a relapse with steroids by a specialist nurse in the individual’s home rather than in hospital. This found that the cost of the service was at least the same and often cheaper when delivered at home than when in hospital.2 A French study applied this research over a larger area and reported considerable savings.3 1. Johnson J, et al. Evaluation of MS specialist nurses: a review and development of the role. London: South Bank University & Letchworth: MS Research Trust; 2001 June. 2. Chataway J, et al. Home versus outpatient administration of intravenous steroids for multiple-sclerosis relapses: a randomised controlled trial. Lancet Neurology 2006;5(7):565-571. 3. Créange A, et al. Home administration of intravenous methylprednisolone for multiple sclerosis relapses: the experience of French multiple sclerosis networks. Multiple Sclerosis 2009;15(9):1085-1091.
Assisted suicide guidelines issued The Director of Public Prosecutions has issued new guidelines on prosecution for someone assisting a suicide. The guidelines follow the ruling by the law lords on a campaign mounted by Debbie Purdy, who has
The announcement is not a change in law and assisted suicide remains illegal with a prison sentence of up to 14 years. The new guidelines indicate where the DPP would exercise discretion in applying the law.
Fingolimod granted priority review in the States The Food and Drug Administration (FDA), the licensing body in the USA, has granted priority review to fingolimod (brand name Gilenia), a new oral treatment for relapsing remitting MS. A priority review of a licence application is granted to medicines with high unmet need or in areas with inadequate available treatments and means that the review time will be reduced from ten months to six months. An application for a licence was submitted to the regulators in Europe in December 2009. The European review process is not affected by the American announcement and a decision is not expected before 2011. Order the MS Trust’s Fingolimod factsheet on the back page
Fampridine launched in USA Fampridine (Ampyra), a new oral drug that improves walking in people with MS, was launched in the USA in March. Research conducted by the manufacturer, Acorda, showed improvements in the time needed to complete a 25-foot walking exercise. In granting its approval of the drug, the FDA warned that fampridine can cause seizures when given at higher-thanrecommended doses. It should also not be used by people with kidney disease. Fampridine was submitted for a licence application in Europe in January 2010, and a decision is not expected before 2011.
Call: 01462 476 700
3
Behind the headlines - CCSVI
News
Picture: Reigh LeBlanc
What’s the idea? Chronic cerebro-spinal venous insufficiency (CCSVI) is a theory proposed by Professor Paolo Zamboni, a vascular surgeon at the University of Ferrara in Italy. He suggests that an abnormal narrowing in veins taking blood from the brain causes a build up of iron which crosses the blood-brain barrier damaging cells in the central nervous system.
What’s happened so far? Prof Zamboni’s study found CCSVI in 95% of the 65 participants with MS, but not in a control group of healthy people and people with other neurological conditions.1
Dr Robert Zivadinov, leader of the Buffalo study, said, “We are three to five years away from the possible treatment options. Even with Prof Zamboni’s paper there was very little improvement in patients and it calls for caution - a reasonable approach.”4
Is treatment available? Some centres have begun to offer scanning and surgical treatment for CCSVI. Anecdotally, there are indications of initial improvements but in a number of cases symptoms and CCSVI seem to return and some people have had further operations.
What are the risks of treatment?
The first study to test this theory, based at the University of Buffalo, released results in February 2010. Scans of 500 people, including 280 with MS, showed CCSVI in 56.4% of the people with MS but also in 22.4% of the healthy controls.2 Full results were reported at the American Academy of Neurology meeting in April and further phases are ongoing.
In March, Stanford Medical Center suspended surgery after two people developed serious complications. A death from a brain haemorrhage, whilst not directly linked to the surgery, led to concerns about adequate evaluation of risks. A second person required open heart surgery after a jugular vein stent dislodged.
Whilst the prevalence of CCSVI is not as clear cut as in the original findings, the implications of the higher prevalence in people with MS requires further exploration. An international panel of neurologists, vascular surgeons and radiographers has been formed to review applications for funding for further studies.
Although these are the first complications to be reported, Dr Jeffrey Dunn, associate director of Stanford’s MS Center, warned, “Patients remain insufficiently aware of the active and serious risks.”4
Prof Zamboni has proposed that CCSVI can be treated with surgery. His review of 35 people with relapsing remitting MS found that 50% had no relapses in the year following surgery, compared to 27% in the period before undergoing the procedure. Results from 30 people with progressive forms of MS showed no significant change in cognitive and motor function.3
CCSVI needs further research and we would urge caution when considering investing in treatment that is based on as yet incomplete evidence. However, undergoing any treatment has to be a matter of personal choice, having weighed up the benefits and risks. If considering surgery, ask key questions such as, what will the surgery achieve and how can this be demonstrated; what is the experience of the surgeon; will more operations be necessary; and what level of support is available should there be complications?
What do the experts say? Prof Neil Scolding, Burden Professor of Clinical Neurosciences, Bristol and a trustee of the MS Trust, said, “The tissue changes seen under a microscope in MS do not suggest diseased veins and the effects of immune treatments would also be difficult to explain on this basis. Nonetheless it is quite right that further scientific testing is done to pursue these claims carefully.”
2
What’s the MS Trust view?
References 1. Zamboni P, et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. Journal of Neurology, Neurosurgery & Psychiatry 2009;80(4):392-399. 2. University of Buffalo press release - 10 February 2010. 3. Zamboni P, et al. A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency. Journal of Vascular Surgery 2009;50:1348-1358. 4. Experimental multiple sclerosis vascular shunting procedure halted at Stanford. Annals of Neurology 2010; 67(1):A13-15.
www.mstrust.org.uk
Specialist nurses can save NHS money
MS, to clarify the law. She and her husband wanted to know under what circumstances he would be prosecuted if he helped her travel abroad to die.
The Royal College of Nursing (RCN) has published a report that suggests the NHS could save money by investing in specialist nurses. The RCN surveyed almost 300 specialist nurses working in different conditions and settings. Amongst other findings it estimates that millions of pounds could be saved by treating MS relapses at home rather than in hospital.
Following several months of public consultation, the new guidelines centre on whether the individual has made a voluntary, clear and informed decision and whether the assistor was wholly motivated by compassion and does not stand to gain from the death.
The MS Trust has campaigned for specialist nurses for MS since the 1990s and was instrumental in saving a number of posts in the NHS’s financial crisis in 2006 through support to nurses and direct contact with NHS Trusts. The RCN report echoes research funded by the MS Trust in 2001 that found that by offering a more responsive and focussed service to people with MS, an MS nurse could lead to savings of £64,000 a year in hospital admissions alone.1 Further research looked at the treatment of a relapse with steroids by a specialist nurse in the individual’s home rather than in hospital. This found that the cost of the service was at least the same and often cheaper when delivered at home than when in hospital.2 A French study applied this research over a larger area and reported considerable savings.3 1. Johnson J, et al. Evaluation of MS specialist nurses: a review and development of the role. London: South Bank University & Letchworth: MS Research Trust; 2001 June. 2. Chataway J, et al. Home versus outpatient administration of intravenous steroids for multiple-sclerosis relapses: a randomised controlled trial. Lancet Neurology 2006;5(7):565-571. 3. Créange A, et al. Home administration of intravenous methylprednisolone for multiple sclerosis relapses: the experience of French multiple sclerosis networks. Multiple Sclerosis 2009;15(9):1085-1091.
Assisted suicide guidelines issued The Director of Public Prosecutions has issued new guidelines on prosecution for someone assisting a suicide. The guidelines follow the ruling by the law lords on a campaign mounted by Debbie Purdy, who has
The announcement is not a change in law and assisted suicide remains illegal with a prison sentence of up to 14 years. The new guidelines indicate where the DPP would exercise discretion in applying the law.
Fingolimod granted priority review in the States The Food and Drug Administration (FDA), the licensing body in the USA, has granted priority review to fingolimod (brand name Gilenia), a new oral treatment for relapsing remitting MS. A priority review of a licence application is granted to medicines with high unmet need or in areas with inadequate available treatments and means that the review time will be reduced from ten months to six months. An application for a licence was submitted to the regulators in Europe in December 2009. The European review process is not affected by the American announcement and a decision is not expected before 2011. Order the MS Trust’s Fingolimod factsheet on the back page
Fampridine launched in USA Fampridine (Ampyra), a new oral drug that improves walking in people with MS, was launched in the USA in March. Research conducted by the manufacturer, Acorda, showed improvements in the time needed to complete a 25-foot walking exercise. In granting its approval of the drug, the FDA warned that fampridine can cause seizures when given at higher-thanrecommended doses. It should also not be used by people with kidney disease. Fampridine was submitted for a licence application in Europe in January 2010, and a decision is not expected before 2011.
Call: 01462 476 700
3
Impact of MS on employment
Research news
Two large surveys of people with MS, performed four years apart (2003 and 2007) in Australia, collected information about employment rates. 1,135 people completed the first survey, 1,329 the second and 667 completed both. Over the four year period, for the group completing both questionnaires, there was a 5.4% loss of employment. By 2007, 56% had lost employment due to MS.
For mothers with rheumatoid arthritis or no longterm condition, increased fatigue resulted in increased hassles. Higher levels of fatigue had a significant effect on monitoring child whereabouts for all three groups.
Mums and MS Two recent studies have explored the effect of MS on different aspects of women’s lives. One study looked for any effect of pregnancy and childbirth on progression of MS over an 18 year period. The researchers Picture: Ben Ostrowsky explored how long it took from onset of MS to reach a level of disability where a walking aid was needed. Women who had given birth at any point in time - either before or after the onset of MS - were 34% less likely to reach this stage of disability than childless women with MS. These results could suggest that having children slows down the progression of MS. However, it’s possible that women who had worse MS at the start of the study were less likely to choose to have children after diagnosis, either because they didn’t feel well enough or because they worried about their ability to cope with bringing up children. The study does show that being pregnant or having children is unlikely to make MS worse, and may slow down the rate at which MS gets worse. D’hooghe MB, et al. Long-term effects of childbirth in MS. Journal of Neurology Neurosurgery and Psychiatry 2010;81:38-41.
Fatigue can be a debilitating symptom that affects many aspects of life. Yet there is little research on how maternal fatigue in MS affects parenting. American researchers compared the impact of fatigue on three groups of mums. 103 mothers with MS, 68 with rheumatoid arthritis and 91 with no long-term condition rated their fatigue, depression, quality and quantity of sleep, dealing with the typical daily hassles of parenting, discipline styles and monitoring of child whereabouts. Surprisingly, for mums with MS, higher levels of fatigue did not affect frequency or severity of clashes with children. The number of children in the family and poor sleep had a bigger influence on the escalation of exchanges.
4
The researchers suggest that mothers with MS have learned to deal with persistent, often debilitating fatigue by adjusting their expectations about parenting or their parenting style and that children may spot the effect of fatigue on their mother and adjust their behaviour to create fewer hassles for her. White CP, et al. Maternal fatigue and its relationship to the caregiving environment. Families Systems and Health 2009; 27:325-345.
Keep taking the medicine? Adherence is the term used to describe how closely someone follows medical advice, such as routinely taking medication. Levels of adherence to disease modifying treatments (DMT) and the impact on relapse rates and use of healthcare resources were gathered over a three year period. 1,606 people were classified as either adherent (took 85% or more of their DMT) or non-adherent (took less than 85% of their DMT). Overall, a low level of adherence was found: during the study period, people took on average 72 to 76% of their medication, with only 27-41% of participants in each year considered adherent and only 4% adherent for the full three year period. Those who were adherent tended to have a lower risk of relapses over the three years. Adherence in one year also tended to be associated with a lower risk of requiring emergency treatment or hospital admissions in the following year. The data suggest that low adherence can lead to increased relapse rates and increased use of hospital resources. However, other studies have also shown that experiencing relapses while on DMT can lead to reduced adherence. Steinberg SC, et al. Impact of adherence to interferons in the treatment of multiple sclerosis: a nonexperimental, retrospective, cohort study. Clinical Drug Investigation 2010;30:89-100.
www.mstrust.org.uk
New MRI techniques reveal more detail
A major finding was that people with MS were losing employment mainly because of disabling symptoms, rather than because of ‘workplace’ factors such as inflexibility of working conditions or being sacked. Symptoms most often linked to actual or perceived risk of employment loss were fatigue, mobility-related symptoms, arm and hand difficulties and cognitive problems. The researchers recommend early, supported disclosure of diagnosis to employers so that appropriate adjustments can be discussed. In the UK, the Disability Discrimination Act requires employers to consider making ‘reasonable adjustments’ to make sure employees with MS are not put at substantial disadvantage by employment arrangements or physical features of the workplace. Simmons RD, et al. Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management Journal of Neurology 2010 Jan 19. [Epub ahead of print]
The economic impact of loss of employment has been highlighted in a Danish study. 2,538 people diagnosed with MS between 1980 and 1989 were compared to a group drawn from the general population. Five years after diagnosis, the likelihood of taking early pension was 30% for people with MS compared to 3% for the general population. At 20 years, the gap had widened still further, with the risk of taking early pension 78% for people with MS vs 14% for the general population. Those people with MS that remained in work had almost the same income as the general population. However, for those taking early pension, income over time was significantly lower. The authors conclude that MS seriously affects the economic life of people with MS, even within a few years of onset. Pfleger CC, et al. Social consequences of multiple sclerosis (1): early pension and temporary unemployment - a historical prospective cohort study. Multiple Sclerosis 2010;16:121-126.
Order the MS Trust’s book At work with MS on the back page
MS is generally considered as affecting white matter of the brain and spinal cord. White matter is composed of bundles of nerve axons; the white appearance results from the myelin coating of axons. However, an increasing number of studies have shown that grey matter, which consists mostly of nerve cell bodies, is also affected and that this may have equal or even greater significance for the changes seen in MS. MRI machines used for diagnosis use a large tubular magnet which generates a magnetic field of 1.5 Tesla (the international unit of measurement of magnetic strength). This magnetic field is not strong enough to detect changes in the grey matter. Recent research represents a breakthrough in the study of the brain in MS by MRI techniques. Very powerful 9.4 Tesla MRI has been used to reveal grey matter lesions with great accuracy in postmortem MS brain tissue. Details seen in the MRI scans have been confirmed and correlated with details seen under the microscope with more conventional tissue staining. The next step will be to translate these results into live studies using high field magnetic resonance imaging (eg 3 Tesla and 7 Tesla). This will help us understand brain changes in MS and provide much more detailed tools for assessing the effects of potential treatments. Schmierer K, et al. High field (9.4 Tesla) magnetic resonance imaging of cortical grey matter lesions in multiple sclerosis. Brain 2010 Jan 31. [Epub ahead of print]
Call: 01462 476 700
5
Impact of MS on employment
Research news
Two large surveys of people with MS, performed four years apart (2003 and 2007) in Australia, collected information about employment rates. 1,135 people completed the first survey, 1,329 the second and 667 completed both. Over the four year period, for the group completing both questionnaires, there was a 5.4% loss of employment. By 2007, 56% had lost employment due to MS.
For mothers with rheumatoid arthritis or no longterm condition, increased fatigue resulted in increased hassles. Higher levels of fatigue had a significant effect on monitoring child whereabouts for all three groups.
Mums and MS Two recent studies have explored the effect of MS on different aspects of women’s lives. One study looked for any effect of pregnancy and childbirth on progression of MS over an 18 year period. The researchers Picture: Ben Ostrowsky explored how long it took from onset of MS to reach a level of disability where a walking aid was needed. Women who had given birth at any point in time - either before or after the onset of MS - were 34% less likely to reach this stage of disability than childless women with MS. These results could suggest that having children slows down the progression of MS. However, it’s possible that women who had worse MS at the start of the study were less likely to choose to have children after diagnosis, either because they didn’t feel well enough or because they worried about their ability to cope with bringing up children. The study does show that being pregnant or having children is unlikely to make MS worse, and may slow down the rate at which MS gets worse. D’hooghe MB, et al. Long-term effects of childbirth in MS. Journal of Neurology Neurosurgery and Psychiatry 2010;81:38-41.
Fatigue can be a debilitating symptom that affects many aspects of life. Yet there is little research on how maternal fatigue in MS affects parenting. American researchers compared the impact of fatigue on three groups of mums. 103 mothers with MS, 68 with rheumatoid arthritis and 91 with no long-term condition rated their fatigue, depression, quality and quantity of sleep, dealing with the typical daily hassles of parenting, discipline styles and monitoring of child whereabouts. Surprisingly, for mums with MS, higher levels of fatigue did not affect frequency or severity of clashes with children. The number of children in the family and poor sleep had a bigger influence on the escalation of exchanges.
4
The researchers suggest that mothers with MS have learned to deal with persistent, often debilitating fatigue by adjusting their expectations about parenting or their parenting style and that children may spot the effect of fatigue on their mother and adjust their behaviour to create fewer hassles for her. White CP, et al. Maternal fatigue and its relationship to the caregiving environment. Families Systems and Health 2009; 27:325-345.
Keep taking the medicine? Adherence is the term used to describe how closely someone follows medical advice, such as routinely taking medication. Levels of adherence to disease modifying treatments (DMT) and the impact on relapse rates and use of healthcare resources were gathered over a three year period. 1,606 people were classified as either adherent (took 85% or more of their DMT) or non-adherent (took less than 85% of their DMT). Overall, a low level of adherence was found: during the study period, people took on average 72 to 76% of their medication, with only 27-41% of participants in each year considered adherent and only 4% adherent for the full three year period. Those who were adherent tended to have a lower risk of relapses over the three years. Adherence in one year also tended to be associated with a lower risk of requiring emergency treatment or hospital admissions in the following year. The data suggest that low adherence can lead to increased relapse rates and increased use of hospital resources. However, other studies have also shown that experiencing relapses while on DMT can lead to reduced adherence. Steinberg SC, et al. Impact of adherence to interferons in the treatment of multiple sclerosis: a nonexperimental, retrospective, cohort study. Clinical Drug Investigation 2010;30:89-100.
www.mstrust.org.uk
New MRI techniques reveal more detail
A major finding was that people with MS were losing employment mainly because of disabling symptoms, rather than because of ‘workplace’ factors such as inflexibility of working conditions or being sacked. Symptoms most often linked to actual or perceived risk of employment loss were fatigue, mobility-related symptoms, arm and hand difficulties and cognitive problems. The researchers recommend early, supported disclosure of diagnosis to employers so that appropriate adjustments can be discussed. In the UK, the Disability Discrimination Act requires employers to consider making ‘reasonable adjustments’ to make sure employees with MS are not put at substantial disadvantage by employment arrangements or physical features of the workplace. Simmons RD, et al. Living with multiple sclerosis: longitudinal changes in employment and the importance of symptom management Journal of Neurology 2010 Jan 19. [Epub ahead of print]
The economic impact of loss of employment has been highlighted in a Danish study. 2,538 people diagnosed with MS between 1980 and 1989 were compared to a group drawn from the general population. Five years after diagnosis, the likelihood of taking early pension was 30% for people with MS compared to 3% for the general population. At 20 years, the gap had widened still further, with the risk of taking early pension 78% for people with MS vs 14% for the general population. Those people with MS that remained in work had almost the same income as the general population. However, for those taking early pension, income over time was significantly lower. The authors conclude that MS seriously affects the economic life of people with MS, even within a few years of onset. Pfleger CC, et al. Social consequences of multiple sclerosis (1): early pension and temporary unemployment - a historical prospective cohort study. Multiple Sclerosis 2010;16:121-126.
Order the MS Trust’s book At work with MS on the back page
MS is generally considered as affecting white matter of the brain and spinal cord. White matter is composed of bundles of nerve axons; the white appearance results from the myelin coating of axons. However, an increasing number of studies have shown that grey matter, which consists mostly of nerve cell bodies, is also affected and that this may have equal or even greater significance for the changes seen in MS. MRI machines used for diagnosis use a large tubular magnet which generates a magnetic field of 1.5 Tesla (the international unit of measurement of magnetic strength). This magnetic field is not strong enough to detect changes in the grey matter. Recent research represents a breakthrough in the study of the brain in MS by MRI techniques. Very powerful 9.4 Tesla MRI has been used to reveal grey matter lesions with great accuracy in postmortem MS brain tissue. Details seen in the MRI scans have been confirmed and correlated with details seen under the microscope with more conventional tissue staining. The next step will be to translate these results into live studies using high field magnetic resonance imaging (eg 3 Tesla and 7 Tesla). This will help us understand brain changes in MS and provide much more detailed tools for assessing the effects of potential treatments. Schmierer K, et al. High field (9.4 Tesla) magnetic resonance imaging of cortical grey matter lesions in multiple sclerosis. Brain 2010 Jan 31. [Epub ahead of print]
Call: 01462 476 700
5
MS and me - not just waffle!
How MS and me was developed Carole Chance, Sandra Evans and Liz Gumbley are people with MS who were involved in putting the book together
The development of a self-management guide to living with MS
MS nurse Nikki Embrey is passionate about supporting people with MS to gain the skills needed to successfully manage the condition. One group of people who attended Nikki’s course on self-management wanted to share their experiences and spread the word about how self-management techniques have helped them to better cope with the challenges of living with MS. The group’s conclusion - “We wanted action - not just waffle.” The result is the MS Trust’s new book MS and me - a self-management guide to living with MS.
What is self-management? Nikki Embrey, MS Specialist Nurse, University Hospital North Staffordshire Living effectively with MS means using all the resources available. Some of those will be internal, like setting goals, and some of them will be external such as finding information. The term often used for this is self-management
Self-management is focused on the individual. This means that, as someone with MS, you are vital to managing your our own condition. However this does not mean ‘going it alone’ but working in partnership with health professionals and with the support of friends and family. Self-management techniques offer ways to achieve this. For example keeping an MS diary can help you to recognise what might make a symptom worse and remind you of questions to ask your MS nurse or GP.
Everyone’s ideas and experiences of selfmanagement were very different. But eventually we recognised that ultimately self-management means being able to adapt, to solve problems, to make decisions and adopt healthy choices. We agreed that the book needed to feature these elements:
“Self-management can enable you to control the things you can control and better deal with the things you can’t” MS and me Self-management is recognised as important in today’s health care system. The Expert Patients Programme (EPP) is available for people with any long-term condition and there are Getting to Grips courses for people living with MS. These courses aim to improve confidence so that people can become active in managing their MS and the effects it may have on their lives.
Problem solving techniques can break down what looks like an insurmountable difficulty into manageable pieces, and reframing situations can help you to look at things in a different way.
Studies have shown that people who are most likely to successfully self-manage their MS: I have a good understanding of MS
I Developing partnerships with health professionals - participation and information sharing are key elements of self-management working together toward shared goals driven by the person with MS.
I Setting goals and monitoring MS - setting goals helps when monitoring progress. A selfmanagement diary is helpful and encourages better communication with health care professionals.
I actively participate in making decisions with health professionals, adopt healthy life styles and take action.
6
I Finding and using resources - information is now more readily available with new ways being designed to help people find appropriate resources to self-manage.
I Solving problems and making decisions important skills based upon having the information or knowledge to find solutions to existing and potential problems.
I manage the impact on physical, social and working life and are able to make adjustments where needed
“The very nature of MS requires a dynamic and positive approach: moving from a passive role to a proactive one - learning to take the lead in living with MS and the changes it brings.” Liz
We knew how important self-management was to us and felt we wanted to share this with others - to provide them with the information we had found useful. We decided we wanted a really accessible self-management guide without too much jargon and felt it was important that it came directly from people who had MS and experience of managing their MS successfully.
MS and me aims to support you to gain the skills and confidence that will enable you to make the treatment and lifestyle choices that are right for you.
www.mstrust.org.uk
We wanted it to be useful to people whether they had just been diagnosed or had been living with MS for many years.
“When I was first diagnosed, my thoughts about selfmanagement were very different to now. Initially a feeling of ‘why me?’ and emotions like fear, anger, depression, hate, and others all came to mind. Now I do feel so much better, I feel that now I am in control, I can influence my health” Towards the final stages of developing the book we realised that we were all aware of the strategies for self-management, but were not always putting them to the best use. It was interesting to discover that the skills we use in our daily lives - planning, setting goals, etc - were the same skills that we could be using to manage our MS. The process of developing this book was very empowering, feeling that our experiences as people with MS were valued and that our opinion was actively sought. Knowing that we could help others manage their own condition was very satisfying. We are excited about the launch of MS and me and hope others will benefit from the publication. Order MS and me on the back page or visit www.mstrust.org.uk/publications
Call: 01462 476 700
7
MS and me - not just waffle!
How MS and me was developed Carole Chance, Sandra Evans and Liz Gumbley are people with MS who were involved in putting the book together
The development of a self-management guide to living with MS
MS nurse Nikki Embrey is passionate about supporting people with MS to gain the skills needed to successfully manage the condition. One group of people who attended Nikki’s course on self-management wanted to share their experiences and spread the word about how self-management techniques have helped them to better cope with the challenges of living with MS. The group’s conclusion - “We wanted action - not just waffle.” The result is the MS Trust’s new book MS and me - a self-management guide to living with MS.
What is self-management? Nikki Embrey, MS Specialist Nurse, University Hospital North Staffordshire Living effectively with MS means using all the resources available. Some of those will be internal, like setting goals, and some of them will be external such as finding information. The term often used for this is self-management
Self-management is focused on the individual. This means that, as someone with MS, you are vital to managing your our own condition. However this does not mean ‘going it alone’ but working in partnership with health professionals and with the support of friends and family. Self-management techniques offer ways to achieve this. For example keeping an MS diary can help you to recognise what might make a symptom worse and remind you of questions to ask your MS nurse or GP.
Everyone’s ideas and experiences of selfmanagement were very different. But eventually we recognised that ultimately self-management means being able to adapt, to solve problems, to make decisions and adopt healthy choices. We agreed that the book needed to feature these elements:
“Self-management can enable you to control the things you can control and better deal with the things you can’t” MS and me Self-management is recognised as important in today’s health care system. The Expert Patients Programme (EPP) is available for people with any long-term condition and there are Getting to Grips courses for people living with MS. These courses aim to improve confidence so that people can become active in managing their MS and the effects it may have on their lives.
Problem solving techniques can break down what looks like an insurmountable difficulty into manageable pieces, and reframing situations can help you to look at things in a different way.
Studies have shown that people who are most likely to successfully self-manage their MS: I have a good understanding of MS
I Developing partnerships with health professionals - participation and information sharing are key elements of self-management working together toward shared goals driven by the person with MS.
I Setting goals and monitoring MS - setting goals helps when monitoring progress. A selfmanagement diary is helpful and encourages better communication with health care professionals.
I actively participate in making decisions with health professionals, adopt healthy life styles and take action.
6
I Finding and using resources - information is now more readily available with new ways being designed to help people find appropriate resources to self-manage.
I Solving problems and making decisions important skills based upon having the information or knowledge to find solutions to existing and potential problems.
I manage the impact on physical, social and working life and are able to make adjustments where needed
“The very nature of MS requires a dynamic and positive approach: moving from a passive role to a proactive one - learning to take the lead in living with MS and the changes it brings.” Liz
We knew how important self-management was to us and felt we wanted to share this with others - to provide them with the information we had found useful. We decided we wanted a really accessible self-management guide without too much jargon and felt it was important that it came directly from people who had MS and experience of managing their MS successfully.
MS and me aims to support you to gain the skills and confidence that will enable you to make the treatment and lifestyle choices that are right for you.
www.mstrust.org.uk
We wanted it to be useful to people whether they had just been diagnosed or had been living with MS for many years.
“When I was first diagnosed, my thoughts about selfmanagement were very different to now. Initially a feeling of ‘why me?’ and emotions like fear, anger, depression, hate, and others all came to mind. Now I do feel so much better, I feel that now I am in control, I can influence my health” Towards the final stages of developing the book we realised that we were all aware of the strategies for self-management, but were not always putting them to the best use. It was interesting to discover that the skills we use in our daily lives - planning, setting goals, etc - were the same skills that we could be using to manage our MS. The process of developing this book was very empowering, feeling that our experiences as people with MS were valued and that our opinion was actively sought. Knowing that we could help others manage their own condition was very satisfying. We are excited about the launch of MS and me and hope others will benefit from the publication. Order MS and me on the back page or visit www.mstrust.org.uk/publications
Call: 01462 476 700
7
The body compensates. I may have tight hamstrings that mean I can only move very slightly in a sitting forward bend, but my twisty intercostal muscles have inspired my teacher to say she has rarely seen such a twisty spine in all her years of teaching. Yoga has constantly surprised me. It has taught me my limitations are not where I believe them to be, that I can go further than I ever thought - but only by relaxing and backing off and then gently and respectfully requesting whether I can do more, accepting whatever answer may come with equanimity.
MS and yoga
Picture: Liz West
As in yoga, so in life. Alison Potts In fact, fitness and stamina are only by-products of yoga. The actual aim of the asanas - the poses or stretches - is to bring stillness to the mind and body and in doing so, render them open. All the asanas are designed to keep our bodies as vital and open as when we were children, allowing the breath to flow freely, warming, nourishing and energising our internal bodies and giving us mental clarity. Yoga is all about becoming the breath (prana). The asanas are the tool that gets us there. In life, we tend to forget to breathe well. Stress, pain, fatigue and immobility all contribute to us hunching and tensing up, making our breathing shallow. I used to think MS was solely to blame for my problems with chronic fatigue. Now I know differently and I see how important good breathing is to health. No 15 Dhanurasana variation - the Sphinx Opens front body and chakras, works in between shoulders, works lower back gently To a person who hasn’t got MS it’s simple. You exercise to get stronger, fitter and have more energy. To a person with MS, it’s a can riddled with worms. We’ve all been there - one morning’s fantastic workout equals a week in bed. How often do health professionals say “Use it or lose it”, failing to add, crucially, “Have you ever searched for the Holy Grail? That would be easy in comparison.” For years my search for an effective workout that would strengthen without sapping me has taken me to a frustrating cul-de-sac. Today, however, I am in a dramatically different place. I have stamina, energy and clarity I’ve not had since before MS struck. My body is getting stronger, fitter and more toned. Most importantly, after years of being engaged in battle with it, I am completely at peace with myself and my MS. Six months ago, yoga came into my life and transformed it in ways I could never have imagined. I have lived with MS for 20 years. I am a yoga novice. But already, it has brought sweeping, positive changes onpicture: everyXhyraGraf level - physical, mental and spiritual.
8
Something else I now understand is that thoughts and emotions are as fatiguing as physical activity. In yoga, once we have settled into an asana and set our pose, we are asked to move our minds away from our bodies and our thoughts and concentrate purely on deep yogic breathing. Then, something magical happens. Our bodies become lighter, they become immaterial - how liberating for someone with MS! - and, in this precious stillness, there is a lifting of fatigue, elevating of mood and an arrival of clarity. I wouldn’t believe it possible had I not experienced it. Many times I have failed to complete a gym session because of fatigue, but in six months of doing yoga, I have never missed a class, no matter how bad my MS. And however I feel at the start of the class, I leave feeling energised, alert and ready to face whatever I have to face. Some of my experiences in yoga have been profoundly moving for me. I used to be constantly at odds with myself, as a result of living with my ‘faulty’ body. I set the bar so high for what I wanted to achieve and my health always let me down. After a while, that made inroads on my self respect. Everyone has an inner critic but mine was on fire. I saw my body as working against me - it didn’t do what it used to do, it didn’t do what I wanted it to do, it stopped me getting to where I needed to be, it
www.mstrust.org.uk
No 10 Virabhadrasana 2 - Warrior 2 Strengthens legs and arms, brings confidence and spatial awareness disappointed my expectations, it isolated me and made my life complicated in ways no one around me could understand. Without me registering it, my mind was constantly shouting at myself. Then in my first yoga class, I was trying to stretch myself further than my body felt it wanted to go and Penny, my teacher, said, “Don’t push. Relax. Encourage yourself. Respectfully ask your body if it can go further. When you treat your body with encouragement, you find it gives. Treat your body like a child. You love your child unconditionally - you wouldn’t judge your child, or punish your child. You just want to help them achieve their potential.” What a revelation. I do have a child and I would never push her the way I have pushed myself nor accuse her of failure when she has tried so very hard: it was a life changing moment. We are individuals. We are all good at different things. Yoga reminds us the harmfulness of judging ourselves by internal pressures and social expectations. That’s all ego and yoga isn’t interested in ego. Says Penny: “We all have a part of the body that works more harmoniously. Yoga asks for 80% effort, never a hundred. It asks you to give the best of what you have today. “Physically, you set your bones in each pose to the best of your ability that day. You tell yourself ‘I am going as far as I can today.’ Then you have to let go. Yoga is about releasing tension and going into breath. And when you let go and back off a bit from a stretch, you often find you can do more. But first you have to accept the letting go.”
It’s been good for me to be in a non judging, non competitive community of fellow yoga practitioners. At the beginning of each class, Penny checks for any problems which need looking out for and may require her to adapt the postures. Everyone has something. A bad back, a post-childbirth kink, sometimes a stressful period has rendered people ill or exhausted. I don’t feel isolated, as I sometimes have, imagining myself to be among ‘healthy’ people, while I bear the burdens of this dizzyingly challenging condition. In fact, it’s important to speak up about any problems. I had been fine in every class until October when it got colder outside and the community centre cranked up all the radiators. After ten minutes I had turned to a quivering jelly, unable to attempt the asanas. I actually lay on my back and laughed. “I thought you weren’t yourself!” cried Penny when I explained about heat and my MS. “We are used to being told the details of people’s illnesses,” she says. “We need to know them so that we can make any adjustments to poses or bring in supports such as a wall for balance or blocks and straps to help suppleness.” At the end of the class, we put our hands together, bow to each other and say “Namaste,” meaning “my soul to your soul.” It’s a sign of respect. It’s an acknowledgement of the light inside ourselves and others. We’re all equal. We’re all amazing human beings. We’re all connected.
No 12 Vrkasana - the Tree Balances focus the mind, lengthens spine, and opens hips
For more information on yoga and finding a teacher, contact The British Wheel Of Yoga - 01529 306851 / office@bwy.org.uk / www.bwy.org.uk
Call: 01462 476 700
9
The body compensates. I may have tight hamstrings that mean I can only move very slightly in a sitting forward bend, but my twisty intercostal muscles have inspired my teacher to say she has rarely seen such a twisty spine in all her years of teaching. Yoga has constantly surprised me. It has taught me my limitations are not where I believe them to be, that I can go further than I ever thought - but only by relaxing and backing off and then gently and respectfully requesting whether I can do more, accepting whatever answer may come with equanimity.
MS and yoga
Picture: Liz West
As in yoga, so in life. Alison Potts In fact, fitness and stamina are only by-products of yoga. The actual aim of the asanas - the poses or stretches - is to bring stillness to the mind and body and in doing so, render them open. All the asanas are designed to keep our bodies as vital and open as when we were children, allowing the breath to flow freely, warming, nourishing and energising our internal bodies and giving us mental clarity. Yoga is all about becoming the breath (prana). The asanas are the tool that gets us there. In life, we tend to forget to breathe well. Stress, pain, fatigue and immobility all contribute to us hunching and tensing up, making our breathing shallow. I used to think MS was solely to blame for my problems with chronic fatigue. Now I know differently and I see how important good breathing is to health. No 15 Dhanurasana variation - the Sphinx Opens front body and chakras, works in between shoulders, works lower back gently To a person who hasn’t got MS it’s simple. You exercise to get stronger, fitter and have more energy. To a person with MS, it’s a can riddled with worms. We’ve all been there - one morning’s fantastic workout equals a week in bed. How often do health professionals say “Use it or lose it”, failing to add, crucially, “Have you ever searched for the Holy Grail? That would be easy in comparison.” For years my search for an effective workout that would strengthen without sapping me has taken me to a frustrating cul-de-sac. Today, however, I am in a dramatically different place. I have stamina, energy and clarity I’ve not had since before MS struck. My body is getting stronger, fitter and more toned. Most importantly, after years of being engaged in battle with it, I am completely at peace with myself and my MS. Six months ago, yoga came into my life and transformed it in ways I could never have imagined. I have lived with MS for 20 years. I am a yoga novice. But already, it has brought sweeping, positive changes onpicture: everyXhyraGraf level - physical, mental and spiritual.
8
Something else I now understand is that thoughts and emotions are as fatiguing as physical activity. In yoga, once we have settled into an asana and set our pose, we are asked to move our minds away from our bodies and our thoughts and concentrate purely on deep yogic breathing. Then, something magical happens. Our bodies become lighter, they become immaterial - how liberating for someone with MS! - and, in this precious stillness, there is a lifting of fatigue, elevating of mood and an arrival of clarity. I wouldn’t believe it possible had I not experienced it. Many times I have failed to complete a gym session because of fatigue, but in six months of doing yoga, I have never missed a class, no matter how bad my MS. And however I feel at the start of the class, I leave feeling energised, alert and ready to face whatever I have to face. Some of my experiences in yoga have been profoundly moving for me. I used to be constantly at odds with myself, as a result of living with my ‘faulty’ body. I set the bar so high for what I wanted to achieve and my health always let me down. After a while, that made inroads on my self respect. Everyone has an inner critic but mine was on fire. I saw my body as working against me - it didn’t do what it used to do, it didn’t do what I wanted it to do, it stopped me getting to where I needed to be, it
www.mstrust.org.uk
No 10 Virabhadrasana 2 - Warrior 2 Strengthens legs and arms, brings confidence and spatial awareness disappointed my expectations, it isolated me and made my life complicated in ways no one around me could understand. Without me registering it, my mind was constantly shouting at myself. Then in my first yoga class, I was trying to stretch myself further than my body felt it wanted to go and Penny, my teacher, said, “Don’t push. Relax. Encourage yourself. Respectfully ask your body if it can go further. When you treat your body with encouragement, you find it gives. Treat your body like a child. You love your child unconditionally - you wouldn’t judge your child, or punish your child. You just want to help them achieve their potential.” What a revelation. I do have a child and I would never push her the way I have pushed myself nor accuse her of failure when she has tried so very hard: it was a life changing moment. We are individuals. We are all good at different things. Yoga reminds us the harmfulness of judging ourselves by internal pressures and social expectations. That’s all ego and yoga isn’t interested in ego. Says Penny: “We all have a part of the body that works more harmoniously. Yoga asks for 80% effort, never a hundred. It asks you to give the best of what you have today. “Physically, you set your bones in each pose to the best of your ability that day. You tell yourself ‘I am going as far as I can today.’ Then you have to let go. Yoga is about releasing tension and going into breath. And when you let go and back off a bit from a stretch, you often find you can do more. But first you have to accept the letting go.”
It’s been good for me to be in a non judging, non competitive community of fellow yoga practitioners. At the beginning of each class, Penny checks for any problems which need looking out for and may require her to adapt the postures. Everyone has something. A bad back, a post-childbirth kink, sometimes a stressful period has rendered people ill or exhausted. I don’t feel isolated, as I sometimes have, imagining myself to be among ‘healthy’ people, while I bear the burdens of this dizzyingly challenging condition. In fact, it’s important to speak up about any problems. I had been fine in every class until October when it got colder outside and the community centre cranked up all the radiators. After ten minutes I had turned to a quivering jelly, unable to attempt the asanas. I actually lay on my back and laughed. “I thought you weren’t yourself!” cried Penny when I explained about heat and my MS. “We are used to being told the details of people’s illnesses,” she says. “We need to know them so that we can make any adjustments to poses or bring in supports such as a wall for balance or blocks and straps to help suppleness.” At the end of the class, we put our hands together, bow to each other and say “Namaste,” meaning “my soul to your soul.” It’s a sign of respect. It’s an acknowledgement of the light inside ourselves and others. We’re all equal. We’re all amazing human beings. We’re all connected.
No 12 Vrkasana - the Tree Balances focus the mind, lengthens spine, and opens hips
For more information on yoga and finding a teacher, contact The British Wheel Of Yoga - 01529 306851 / office@bwy.org.uk / www.bwy.org.uk
Call: 01462 476 700
9
I Osmotic laxatives (eg lactulose or macrogols (Movicol)) work by drawing fluid from the body or by retaining the fluid in the bowel. These require good fluid intake.
Bowel management
I Stimulant laxatives (eg senna or bisacodyl (Dulcolax)) stimulate the colonic nerves. These are usually taken at bedtime to produce an effect the following morning and are recommended for short-term use only. Abdominal cramping is a common side effect. Picture: Andy
Noreen Barker, MS Specialist Nurse, West Herts PCT Bowel symptoms are often difficult and embarrassing to discuss and many people may be reluctant to seek help and advice. But these symptoms are surprisingly common - research indicates that up to 70% of people with MS may at some time experience constipation or faecal incontinence, which may coexist1 - and can often be treated effectively.
Constipation Constipation is the passing of hard stools with excessive effort less frequently than three times a week. It can be accompanied by abdominal bloating and discomfort, tiredness and fatigue, and a loss of appetite.2,3,4 There are a number of possible causes of constipation in MS. I With some people with MS waste matter moves more slowly through the colon. As one of the functions of the colon is to reabsorb water, the longer the transit time, the harder and smaller stools can become. A simple test to indicate transit time is to eat sweetcorn, which is visible in stools. Normal transit time is less than 72 hours.2 I Reduced sensation can cause reduced awareness of needing to empty the bowel, exacerbating constipation and, if left untreated, causing overflow incontinence. I Weakness or uncoordination of the anal sphincters, weakness of the pelvic floor muscles, and anatomical problems in the rectum (which can be caused by excessive straining on the toilet, childbirth or heavy lifting) can also cause difficulties. I If fluid intake is reduced in an attempt to manage bladder symptoms, the body will compensate by reabsorbing water from stools in the colon and rectum. I Reduced mobility or lack of exercise can worsen constipation and could also impair someone’s ability to get to the toilet when they need to. Similarly, the timing of carer visits to fit in with a person’s bowel habit can be tricky. I Eating breakfast initiates a reflex reaction triggering the urge to go to the toilet. However, many people skip breakfast or eat just as they are about to leave home.
10
I Common medications used in MS can cause constipation as a side effect, including drugs for bladder symptoms, spasticity and depression, as well as iron supplements and antacids. The effect can be multiplied by multiple medications. I Women can experience changes in bowel pattern due to hormonal fluctuations in menstruation or pregnancy.
Management of constipation Fluid and fibre intake Dietary fibre is required to maintain the bulk and softness of stools. The recommended five portions of fruit or vegetables a day can help with this.5 Fibre can be increased by adding a tablespoon of linseeds or flaxseeds into the diet, and many people find prune juice or aloe vera juice is effective. However for people with slow transit time, too much fibre can worsen their symptoms2 and a high fibre diet requires an adequate fluid intake.3
Defecation dynamics The natural posture for opening the bowels is the squat, however this is no longer the position we adopt. Sitting with both feet on a step (like one toddlers use to reach the toilet), with knees slightly higher than hips can help, as can brace and bulging the abdomen to increase abdominal pressure.
I Suppositories or mini enemas cause a contraction in the rectum, softening the stool, and causing contraction in the bowel higher up. They can encourage a regular bowel habit if always used at the same time of day.2
Anal irrigation People with more advanced MS who have previously been unable to manage their bowel with medication and toileting alone may benefit from an anal irrigation system called Peristeen. This uses a catheter to insert warm tap water into the rectum, stimulating the bowel to open.
Quick access A RADAR key, obtained from www.radar.org.uk or 0207 250 3222, gives access to locked public toilets around the UK. An urgency flash card can be obtained from the Bladder & Bowel Foundation at www.bladderandbowelfoundation.org.uk or 01536 533255.
Summary Effective bowel management involves tailoring a combination of different strategies to each individual. Seek the advice of a relevant professional such as a GP, MS specialist nurse, continence specialist nurse or dietician. Talking about bowel symptoms might not be as traumatic as you may imagine, and the solution may be straightforward.
Faecal incontinence is the lack of control over passing stools. The most common cause can in fact be constipation. When a hard plug of impacted stool builds up in the rectum, a loose, watery, diarrhoea like fluid can be passed around it. Incontinence can also be caused by limited sensation, poor anal sphincter tone, over use of laxatives, too much dietary fibre, and gastrointestinal infections causing diarrhoea.4
Management of faecal incontinence Exercises If the sphincter muscles around the anus are weak, continence specialist nurses can teach specific exercises that can help people to have more control.
Medication
Medications
Containment products
Laxatives should really be taken on the advice of a medical professional. Many of the common over the counter preparations are licensed for short-term use and if taken long-term can affect the bowel permanently.2
I Disposable pads can be obtained in many areas via local continence/ bladder and bowel services if faecal incontinence is a permanent problem.
www.mstrust.org.uk
It is important to make sure the skin is kept clean and dry. Barrier creams can be used to prevent soreness, or sprays can be used if skin is already broken and sore.
Faecal incontinence
It is important to allow enough time. The optimum time is twenty minutes after a meal. If nothing has happened after ten to twenty minutes, try again after the next meal.
I Bulk forming laxatives (eg ispaghula husk (Fybogel)) can be used if dietary fibre cannot be increased sufficiently. These are not effective in treating acute constipation.
Skin care
If constipation with overflow has been ruled out as a cause, loperamide (Imodium) or ispaghula husk (Fybogel) can be used.
I Anal plugs are easily inserted and removed and can used for up to 12 hours. However these should not be used without an assessment by a continence specialist nurse or appropriate healthcare professional.
References 1. Wiesel PH, et al Pathophysiology and management of bowel dysfunction in multiple sclerosis. European Journal of Gastroenterology and Hepatology 2001;13(4):441-448. 2. St. Marks Hospital & Burdett Institute Patient Information Leaflet: Constipation. 2009 [cited 2010 Mar 8] PDF available from: http://tinyurl.com/yecw8bl 3. National Prescribing Centre The management of constipation. MeReC Bulletin 2009;14(6). 4. Getliffe K, Dolman M Promoting Continence: a clinical and research resource London: Elsevier Health Sciences; 2009. pp185-223. 5. NHS Choices 5 a day [cited 2010 Feb 23] Available from: http://www.nhs.uk/livewell/5aday/pages/5adayhome.aspx
Order the MS Trust's Bowel problems factsheet on the back page
Call: 01462 476 700
11
I Osmotic laxatives (eg lactulose or macrogols (Movicol)) work by drawing fluid from the body or by retaining the fluid in the bowel. These require good fluid intake.
Bowel management
I Stimulant laxatives (eg senna or bisacodyl (Dulcolax)) stimulate the colonic nerves. These are usually taken at bedtime to produce an effect the following morning and are recommended for short-term use only. Abdominal cramping is a common side effect. Picture: Andy
Noreen Barker, MS Specialist Nurse, West Herts PCT Bowel symptoms are often difficult and embarrassing to discuss and many people may be reluctant to seek help and advice. But these symptoms are surprisingly common - research indicates that up to 70% of people with MS may at some time experience constipation or faecal incontinence, which may coexist1 - and can often be treated effectively.
Constipation Constipation is the passing of hard stools with excessive effort less frequently than three times a week. It can be accompanied by abdominal bloating and discomfort, tiredness and fatigue, and a loss of appetite.2,3,4 There are a number of possible causes of constipation in MS. I With some people with MS waste matter moves more slowly through the colon. As one of the functions of the colon is to reabsorb water, the longer the transit time, the harder and smaller stools can become. A simple test to indicate transit time is to eat sweetcorn, which is visible in stools. Normal transit time is less than 72 hours.2 I Reduced sensation can cause reduced awareness of needing to empty the bowel, exacerbating constipation and, if left untreated, causing overflow incontinence. I Weakness or uncoordination of the anal sphincters, weakness of the pelvic floor muscles, and anatomical problems in the rectum (which can be caused by excessive straining on the toilet, childbirth or heavy lifting) can also cause difficulties. I If fluid intake is reduced in an attempt to manage bladder symptoms, the body will compensate by reabsorbing water from stools in the colon and rectum. I Reduced mobility or lack of exercise can worsen constipation and could also impair someone’s ability to get to the toilet when they need to. Similarly, the timing of carer visits to fit in with a person’s bowel habit can be tricky. I Eating breakfast initiates a reflex reaction triggering the urge to go to the toilet. However, many people skip breakfast or eat just as they are about to leave home.
10
I Common medications used in MS can cause constipation as a side effect, including drugs for bladder symptoms, spasticity and depression, as well as iron supplements and antacids. The effect can be multiplied by multiple medications. I Women can experience changes in bowel pattern due to hormonal fluctuations in menstruation or pregnancy.
Management of constipation Fluid and fibre intake Dietary fibre is required to maintain the bulk and softness of stools. The recommended five portions of fruit or vegetables a day can help with this.5 Fibre can be increased by adding a tablespoon of linseeds or flaxseeds into the diet, and many people find prune juice or aloe vera juice is effective. However for people with slow transit time, too much fibre can worsen their symptoms2 and a high fibre diet requires an adequate fluid intake.3
Defecation dynamics The natural posture for opening the bowels is the squat, however this is no longer the position we adopt. Sitting with both feet on a step (like one toddlers use to reach the toilet), with knees slightly higher than hips can help, as can brace and bulging the abdomen to increase abdominal pressure.
I Suppositories or mini enemas cause a contraction in the rectum, softening the stool, and causing contraction in the bowel higher up. They can encourage a regular bowel habit if always used at the same time of day.2
Anal irrigation People with more advanced MS who have previously been unable to manage their bowel with medication and toileting alone may benefit from an anal irrigation system called Peristeen. This uses a catheter to insert warm tap water into the rectum, stimulating the bowel to open.
Quick access A RADAR key, obtained from www.radar.org.uk or 0207 250 3222, gives access to locked public toilets around the UK. An urgency flash card can be obtained from the Bladder & Bowel Foundation at www.bladderandbowelfoundation.org.uk or 01536 533255.
Summary Effective bowel management involves tailoring a combination of different strategies to each individual. Seek the advice of a relevant professional such as a GP, MS specialist nurse, continence specialist nurse or dietician. Talking about bowel symptoms might not be as traumatic as you may imagine, and the solution may be straightforward.
Faecal incontinence is the lack of control over passing stools. The most common cause can in fact be constipation. When a hard plug of impacted stool builds up in the rectum, a loose, watery, diarrhoea like fluid can be passed around it. Incontinence can also be caused by limited sensation, poor anal sphincter tone, over use of laxatives, too much dietary fibre, and gastrointestinal infections causing diarrhoea.4
Management of faecal incontinence Exercises If the sphincter muscles around the anus are weak, continence specialist nurses can teach specific exercises that can help people to have more control.
Medication
Medications
Containment products
Laxatives should really be taken on the advice of a medical professional. Many of the common over the counter preparations are licensed for short-term use and if taken long-term can affect the bowel permanently.2
I Disposable pads can be obtained in many areas via local continence/ bladder and bowel services if faecal incontinence is a permanent problem.
www.mstrust.org.uk
It is important to make sure the skin is kept clean and dry. Barrier creams can be used to prevent soreness, or sprays can be used if skin is already broken and sore.
Faecal incontinence
It is important to allow enough time. The optimum time is twenty minutes after a meal. If nothing has happened after ten to twenty minutes, try again after the next meal.
I Bulk forming laxatives (eg ispaghula husk (Fybogel)) can be used if dietary fibre cannot be increased sufficiently. These are not effective in treating acute constipation.
Skin care
If constipation with overflow has been ruled out as a cause, loperamide (Imodium) or ispaghula husk (Fybogel) can be used.
I Anal plugs are easily inserted and removed and can used for up to 12 hours. However these should not be used without an assessment by a continence specialist nurse or appropriate healthcare professional.
References 1. Wiesel PH, et al Pathophysiology and management of bowel dysfunction in multiple sclerosis. European Journal of Gastroenterology and Hepatology 2001;13(4):441-448. 2. St. Marks Hospital & Burdett Institute Patient Information Leaflet: Constipation. 2009 [cited 2010 Mar 8] PDF available from: http://tinyurl.com/yecw8bl 3. National Prescribing Centre The management of constipation. MeReC Bulletin 2009;14(6). 4. Getliffe K, Dolman M Promoting Continence: a clinical and research resource London: Elsevier Health Sciences; 2009. pp185-223. 5. NHS Choices 5 a day [cited 2010 Feb 23] Available from: http://www.nhs.uk/livewell/5aday/pages/5adayhome.aspx
Order the MS Trust's Bowel problems factsheet on the back page
Call: 01462 476 700
11
The bank that gives hope
Staff of the MS Tissue Bank
New from the MS Trust
Dr George Gveric, UK MS Tissue Bank The UK Multiple Sclerosis Tissue Bank was set up in 1998 with two clear aims - to fulfil wishes of all those who wanted to help MS research by donating brain and spinal cord tissue, and to provide a resource for scientists investigating various aspects of MS. So far 490 individuals have donated their brain and spinal cord and more than 4,000 people with and without MS have pledged their tissue for MS research. We have supported more than 120 research groups whose experimental work has changed the way we look and think about MS and opened new avenues for treatment.
is sent to the deceased’s GP who can discuss it with relatives if they so wish. It is vital that you let your next-of-kin or legal representative, your GP and any other relevant people know of your intention to donate. The more people who know, the better the chance that it will not be forgotten at the critical moment. Tissue Bank co-ordinators are on call 24 hours a day, every day of the year, to arrange tissue retrieval or to answer urgent questions from donors.
The role of the Tissue Bank
Donating tissue is a lasting legacy
A need for a tissue bank in the UK was recognised some 30 years ago. The impetus for collection, accurate cataloguing and storage of MS tissue arose from pathological evidence of significant variations from brain to brain. An increasing number of research groups in the UK requiring human MS samples for their studies led to the recognition of a need for a dedicated tissue source to supply the wider research community.
We understand that becoming a donor is not an easy choice to make. We produce a donor pack that contains all the relevant information and forms, and our co-ordinators are happy to answer the questions you may have to help you make an informed decision. Brain and spinal cord tissue are not transplantable, so being a donor does not clash with your membership of any other organ donor scheme.
The Tissue Bank now makes high quality tissue available to research groups who are investigating a variety of problems associated with MS. Enabling more people - from both academia and pharmaceutical industry - to do this work means that our likelihood of finding the cause of MS is greatly increased.
Once you decide to become a donor we send you a donor card with your name and an emergency phone number to contact the Tissue Bank. We will also send you The Bank Statement, our annual newsletter, to keep you informed on the progress of the Bank and developments in research projects using donated tissue.
What happens after you donate We aim to collect donated tissue within 24 hours of death, when tissue is most useful for research. However, donated organs are valuable no matter the length of time taken to collect the tissue and can still be used for a number of important scientific studies. We usually organise tissue retrieval at the hospital mortuary nearest to the place of death. Transport costs between mortuary and the funeral directors are covered by the Tissue Bank. Every donation yields approximately 250 samples from which our neuropathologists generate a detailed report. This
12
Donating tissue for research is a lasting legacy. A better understanding of the causes and treatment of human diseases, including MS, is only going to come from studies performed on human tissue made available through the generosity of people who have agreed to donate their organs. UK Multiple Sclerosis Tissue Bank Division of Neuroscience and Mental Health Imperial College London Hammersmith Campus, Du Cane Road London W12 0NN Tel: 0207 594 9734 email: ukmstissuebank@imperial.ac.uk
www.mstrust.org.uk
Already in 2010, the MS Trust has launched three important new resources for people with MS. You can read about the writing of MS and me - a self-management guide to living with MS on page 6. On this page we look at the other new additions.
Exercises for people with MS www.mstrust.org.uk/exercises These pages on our website build on the success of the previous book of the same title, which has been the most popular item produced by the MS Trust. The new version expands the range of exercises and allows users to put together a personalised set of exercises to meet their own particular needs. Staying as active and as fit as possible has been shown to be beneficial for people with MS and an important element in maintaining general health and well being. Regular activity can reduce the risk of coronary disease, lower blood pressure, help to control weight and help protect against osteoporosis. It also has a role in reducing stress and low mood and in helping with a number of MS symptoms including fatigue and bowel and bladder function. Exercises for people with MS was compiled with specialist physiotherapist Liz Betts and contains simple but effective exercises for all people with MS. The exercises are arranged in categories based both on how they are done - whether sitting, standing, kneeling or lying - and the type of problems they address - posture, balance, stretching, etc. Each exercise is clearly illustrated with an animation and can be downloaded as a pdf.
Talking with your kids about MS “I was dreading telling my children about my diagnosis, and I was going to put it off for as long as I could. I thought I had been protecting them, but in hindsight they’d been confused and worried. They were all so young but I hadn’t credited their intelligence.” When a parent is affected by MS, discussing MS with children may seem daunting. As a parent, you know your own circumstances and your own children best. That makes you the best judge of how to discuss MS with your family, when the right time might be and what you might tell them. The MS Trust’s new book, Talking with your kids about MS, developed with neuropsychologist Jo Johnson, looks at the concerns parents may have and aims to provide some ideas to help broach the subject and keep up a dialogue in the future. It doesn’t tell you exactly what to say to your children but it will give some suggestions about how to tell them, some of the things they may want to know and what other parents’ experiences have been. It will help you to talk about MS and encourage your children to ask questions, share their own worries and express their feelings. Talking with your kids about MS joins our range of publications for families:
Other books for families Kids’ guide to MS Aimed at 6-10 year olds who have a mum or dad with MS. The young person’s guide to MS Written with and for 10-16 year olds who have a parent with MS. Order these books on the back page
Call: 01462 476 700
13
The bank that gives hope
Staff of the MS Tissue Bank
New from the MS Trust
Dr George Gveric, UK MS Tissue Bank The UK Multiple Sclerosis Tissue Bank was set up in 1998 with two clear aims - to fulfil wishes of all those who wanted to help MS research by donating brain and spinal cord tissue, and to provide a resource for scientists investigating various aspects of MS. So far 490 individuals have donated their brain and spinal cord and more than 4,000 people with and without MS have pledged their tissue for MS research. We have supported more than 120 research groups whose experimental work has changed the way we look and think about MS and opened new avenues for treatment.
is sent to the deceased’s GP who can discuss it with relatives if they so wish. It is vital that you let your next-of-kin or legal representative, your GP and any other relevant people know of your intention to donate. The more people who know, the better the chance that it will not be forgotten at the critical moment. Tissue Bank co-ordinators are on call 24 hours a day, every day of the year, to arrange tissue retrieval or to answer urgent questions from donors.
The role of the Tissue Bank
Donating tissue is a lasting legacy
A need for a tissue bank in the UK was recognised some 30 years ago. The impetus for collection, accurate cataloguing and storage of MS tissue arose from pathological evidence of significant variations from brain to brain. An increasing number of research groups in the UK requiring human MS samples for their studies led to the recognition of a need for a dedicated tissue source to supply the wider research community.
We understand that becoming a donor is not an easy choice to make. We produce a donor pack that contains all the relevant information and forms, and our co-ordinators are happy to answer the questions you may have to help you make an informed decision. Brain and spinal cord tissue are not transplantable, so being a donor does not clash with your membership of any other organ donor scheme.
The Tissue Bank now makes high quality tissue available to research groups who are investigating a variety of problems associated with MS. Enabling more people - from both academia and pharmaceutical industry - to do this work means that our likelihood of finding the cause of MS is greatly increased.
Once you decide to become a donor we send you a donor card with your name and an emergency phone number to contact the Tissue Bank. We will also send you The Bank Statement, our annual newsletter, to keep you informed on the progress of the Bank and developments in research projects using donated tissue.
What happens after you donate We aim to collect donated tissue within 24 hours of death, when tissue is most useful for research. However, donated organs are valuable no matter the length of time taken to collect the tissue and can still be used for a number of important scientific studies. We usually organise tissue retrieval at the hospital mortuary nearest to the place of death. Transport costs between mortuary and the funeral directors are covered by the Tissue Bank. Every donation yields approximately 250 samples from which our neuropathologists generate a detailed report. This
12
Donating tissue for research is a lasting legacy. A better understanding of the causes and treatment of human diseases, including MS, is only going to come from studies performed on human tissue made available through the generosity of people who have agreed to donate their organs. UK Multiple Sclerosis Tissue Bank Division of Neuroscience and Mental Health Imperial College London Hammersmith Campus, Du Cane Road London W12 0NN Tel: 0207 594 9734 email: ukmstissuebank@imperial.ac.uk
www.mstrust.org.uk
Already in 2010, the MS Trust has launched three important new resources for people with MS. You can read about the writing of MS and me - a self-management guide to living with MS on page 6. On this page we look at the other new additions.
Exercises for people with MS www.mstrust.org.uk/exercises These pages on our website build on the success of the previous book of the same title, which has been the most popular item produced by the MS Trust. The new version expands the range of exercises and allows users to put together a personalised set of exercises to meet their own particular needs. Staying as active and as fit as possible has been shown to be beneficial for people with MS and an important element in maintaining general health and well being. Regular activity can reduce the risk of coronary disease, lower blood pressure, help to control weight and help protect against osteoporosis. It also has a role in reducing stress and low mood and in helping with a number of MS symptoms including fatigue and bowel and bladder function. Exercises for people with MS was compiled with specialist physiotherapist Liz Betts and contains simple but effective exercises for all people with MS. The exercises are arranged in categories based both on how they are done - whether sitting, standing, kneeling or lying - and the type of problems they address - posture, balance, stretching, etc. Each exercise is clearly illustrated with an animation and can be downloaded as a pdf.
Talking with your kids about MS “I was dreading telling my children about my diagnosis, and I was going to put it off for as long as I could. I thought I had been protecting them, but in hindsight they’d been confused and worried. They were all so young but I hadn’t credited their intelligence.” When a parent is affected by MS, discussing MS with children may seem daunting. As a parent, you know your own circumstances and your own children best. That makes you the best judge of how to discuss MS with your family, when the right time might be and what you might tell them. The MS Trust’s new book, Talking with your kids about MS, developed with neuropsychologist Jo Johnson, looks at the concerns parents may have and aims to provide some ideas to help broach the subject and keep up a dialogue in the future. It doesn’t tell you exactly what to say to your children but it will give some suggestions about how to tell them, some of the things they may want to know and what other parents’ experiences have been. It will help you to talk about MS and encourage your children to ask questions, share their own worries and express their feelings. Talking with your kids about MS joins our range of publications for families:
Other books for families Kids’ guide to MS Aimed at 6-10 year olds who have a mum or dad with MS. The young person’s guide to MS Written with and for 10-16 year olds who have a parent with MS. Order these books on the back page
Call: 01462 476 700
13
Rambling for wheelchair users
Gliding down
Pinecone Point
Eva McCracken
Katie Priest
We moved back to Scotland in 1978, four years after I was diagnosed with MS. My husband looked forward to golf, sailing and hill walking. I set my sights a little lower and a little less adventurous. The advice at that time was not to over-exercise and most of my energy was taken up at home - we had four children who kept me busy enough. My love of the outdoors was fulfilled by a large garden and many local, short walks suitable for prams (often doubling as a support). By the time I was 50 my mobility was much reduced and I had now retired. I was still driving and walked with a foldable frame that was light enough to throw in my car. I had never lost my love of walking but I was realistic enough to accept my limitations. Then I met a man at my MS exercise class who went out every day in his motorised scooter. He would visit his local park or harbour, only a few streets away from his house. In an ancient, secondhand, motorised wheelchair I accompanied him. Soon we were joined by some other friends and by 2001 we constituted a group and registered as the charity Scottish Disabled Ramblers (SDR). Although by June 2004 SDR had ceased to exist, it spawned four independent groups around Scotland that still function and each run an annual programme of rambles. I could be out every week with one or other of the groups but unfortunately no matter how the host behaves, MS carries on and does whatever it chooses. With my reduced energy I now manage about once a month. In 2004 my husband came across an AA book on short walks but it gave no indication about barriers to wheels. He suggested I write a book and in April 2006 Walking On Wheels was published. The following years have been filled by trying to promote the great outdoors to those of us reliant on a wheelchair or scooter for mobility. Shopmobility
up and down the country has made our shops accessible. I want to make the possibility of rambling in our beautiful Scottish countryside equally available. I’m very pleased that more and more countryside service providers, such as visitor centres, are providing scooter loan schemes. I’m also aware that new technology means that there is an increasing choice of mobility scooters and cars (with ramps or hoists) with which to transport them, which enables the individual to access the great outdoors. However, information on wheel-friendly trails is hard to find. This is why I wrote the book and set up the Walking On Wheels Trust. This runs a website that adds new walks that have been audited by someone in a wheelchair or scooter. The most recent addition is the Pinecone Point All Ability path in Tay Forest Park near Dunkeld. For those of you who, like me, enjoy the wind in your hair, the smells of grass, heather, pine woods, or sea and who like watching the birds or seeking out new wildflowers, then rambling may be for you. To tell the truth, I don’t often get the wind in my hair because, living in Scotland, I usually have to wear my woolly hat. And should the sun come out to play, out comes my sun hat. Rambling gives a wonderful excuse to build up your outdoor wardrobe.
I was diagnosed with MS in 1995. I didn’t know what MS was. I’d been suffering from optic neuritis and couldn’t see properly; I thought maybe I had a brain tumour. Then I had a brain scan. It was very scary. The consultant neurologist said, “You have multiple sclerosis. I’ll see you at my next clinic. Go and make another appointment.” After I had to give up work, I felt I couldn’t sit around just doing nothing and feeling sorry for myself. I wanted to feel useful again and do something constructive. That’s why, when I read about fundraising by doing a parachute jump for the MS Trust in Open Door, I thought, that’s for me. I chose to jump at Hinton Skydiving near Oxford. We rang to find out if it was possible for me to do it and were assured it was no problem. Yee-ha! They sent me some forms to be completed including one by my GP to say there was no medical reason why I shouldn’t jump! Just because I have MS didn’t mean I wasn’t able to jump, despite what some people said. I wanted to prove them wrong.
14
www.mstrust.org.uk
With my husband and young son, I drove up to Oxfordshire from London, with Mum and Dad following. Lots of very good friends and relatives had come to cheer me on and encourage me. And then disaster struck - Dad had forgotten to bring the medical form. Luckily we were able to contact my younger cousin James, who faxed the form through to the airfield. Yippee. I wasn’t scared or worried about the jump, just annoyed I had to wait so long. When I was being wheeled to the plane by my father in law I felt so excited. There were about nine other people on the plane who all got on first before I was lifted out of my wheelchair into the plane. I was the only tandem jumper on that flight, strapped to my instructor, Geoff. The plane started to taxi and it was ages before they shut the door. The plane went up to around 13,000 feet. One person jumped out before me and then it was my turn. Geoff and I jumped... It was good to get away from the noise of the plane. My ears had popped so I couldn’t hear anything. The parachute opened and we started to glide down. The view was fantastic and the sensation of floating was wonderful. We went round and round and down and down and I felt a little bit dizzy. But the feeling was brilliant. If anyone is nervous about doing a parachute jump, just do it. It is fantastic. The landing was so soft. Geoff touched down and rolled on his back and I was unclipped, the harness and jump suit were taken off and I was back in my wheelchair before I knew it. We then had a late lunch and laughed and joked. We drove back to London and I was on a high for a very long time.
Katie with Geoff
Walking On Wheels is available from Cualann Press 01383 733724 / info@cualann.com / www.cualann.com Walking On Wheels website - www.walkingonwheels.org
I did the jump in July 2009 and it was amazing. One of the best things I’ve done for a long time.
I would like to thank the MS Trust for being such a brilliant organisation and for being there for me and my family and giving us practical and psychological help whenever we need it.
To find out how you could do a parachute jump for the MS Trust, ring 01462 476707 or visit www.mstrust.org.uk/jump
Call: 01462 476 700
15
Rambling for wheelchair users
Gliding down
Pinecone Point
Eva McCracken
Katie Priest
We moved back to Scotland in 1978, four years after I was diagnosed with MS. My husband looked forward to golf, sailing and hill walking. I set my sights a little lower and a little less adventurous. The advice at that time was not to over-exercise and most of my energy was taken up at home - we had four children who kept me busy enough. My love of the outdoors was fulfilled by a large garden and many local, short walks suitable for prams (often doubling as a support). By the time I was 50 my mobility was much reduced and I had now retired. I was still driving and walked with a foldable frame that was light enough to throw in my car. I had never lost my love of walking but I was realistic enough to accept my limitations. Then I met a man at my MS exercise class who went out every day in his motorised scooter. He would visit his local park or harbour, only a few streets away from his house. In an ancient, secondhand, motorised wheelchair I accompanied him. Soon we were joined by some other friends and by 2001 we constituted a group and registered as the charity Scottish Disabled Ramblers (SDR). Although by June 2004 SDR had ceased to exist, it spawned four independent groups around Scotland that still function and each run an annual programme of rambles. I could be out every week with one or other of the groups but unfortunately no matter how the host behaves, MS carries on and does whatever it chooses. With my reduced energy I now manage about once a month. In 2004 my husband came across an AA book on short walks but it gave no indication about barriers to wheels. He suggested I write a book and in April 2006 Walking On Wheels was published. The following years have been filled by trying to promote the great outdoors to those of us reliant on a wheelchair or scooter for mobility. Shopmobility
up and down the country has made our shops accessible. I want to make the possibility of rambling in our beautiful Scottish countryside equally available. I’m very pleased that more and more countryside service providers, such as visitor centres, are providing scooter loan schemes. I’m also aware that new technology means that there is an increasing choice of mobility scooters and cars (with ramps or hoists) with which to transport them, which enables the individual to access the great outdoors. However, information on wheel-friendly trails is hard to find. This is why I wrote the book and set up the Walking On Wheels Trust. This runs a website that adds new walks that have been audited by someone in a wheelchair or scooter. The most recent addition is the Pinecone Point All Ability path in Tay Forest Park near Dunkeld. For those of you who, like me, enjoy the wind in your hair, the smells of grass, heather, pine woods, or sea and who like watching the birds or seeking out new wildflowers, then rambling may be for you. To tell the truth, I don’t often get the wind in my hair because, living in Scotland, I usually have to wear my woolly hat. And should the sun come out to play, out comes my sun hat. Rambling gives a wonderful excuse to build up your outdoor wardrobe.
I was diagnosed with MS in 1995. I didn’t know what MS was. I’d been suffering from optic neuritis and couldn’t see properly; I thought maybe I had a brain tumour. Then I had a brain scan. It was very scary. The consultant neurologist said, “You have multiple sclerosis. I’ll see you at my next clinic. Go and make another appointment.” After I had to give up work, I felt I couldn’t sit around just doing nothing and feeling sorry for myself. I wanted to feel useful again and do something constructive. That’s why, when I read about fundraising by doing a parachute jump for the MS Trust in Open Door, I thought, that’s for me. I chose to jump at Hinton Skydiving near Oxford. We rang to find out if it was possible for me to do it and were assured it was no problem. Yee-ha! They sent me some forms to be completed including one by my GP to say there was no medical reason why I shouldn’t jump! Just because I have MS didn’t mean I wasn’t able to jump, despite what some people said. I wanted to prove them wrong.
14
www.mstrust.org.uk
With my husband and young son, I drove up to Oxfordshire from London, with Mum and Dad following. Lots of very good friends and relatives had come to cheer me on and encourage me. And then disaster struck - Dad had forgotten to bring the medical form. Luckily we were able to contact my younger cousin James, who faxed the form through to the airfield. Yippee. I wasn’t scared or worried about the jump, just annoyed I had to wait so long. When I was being wheeled to the plane by my father in law I felt so excited. There were about nine other people on the plane who all got on first before I was lifted out of my wheelchair into the plane. I was the only tandem jumper on that flight, strapped to my instructor, Geoff. The plane started to taxi and it was ages before they shut the door. The plane went up to around 13,000 feet. One person jumped out before me and then it was my turn. Geoff and I jumped... It was good to get away from the noise of the plane. My ears had popped so I couldn’t hear anything. The parachute opened and we started to glide down. The view was fantastic and the sensation of floating was wonderful. We went round and round and down and down and I felt a little bit dizzy. But the feeling was brilliant. If anyone is nervous about doing a parachute jump, just do it. It is fantastic. The landing was so soft. Geoff touched down and rolled on his back and I was unclipped, the harness and jump suit were taken off and I was back in my wheelchair before I knew it. We then had a late lunch and laughed and joked. We drove back to London and I was on a high for a very long time.
Katie with Geoff
Walking On Wheels is available from Cualann Press 01383 733724 / info@cualann.com / www.cualann.com Walking On Wheels website - www.walkingonwheels.org
I did the jump in July 2009 and it was amazing. One of the best things I’ve done for a long time.
I would like to thank the MS Trust for being such a brilliant organisation and for being there for me and my family and giving us practical and psychological help whenever we need it.
To find out how you could do a parachute jump for the MS Trust, ring 01462 476707 or visit www.mstrust.org.uk/jump
Call: 01462 476 700
15
Information Service news
Order form For a full list of publications visit www.mstrust.org.uk/publications or order the Publication Leaflet
New factsheets Vitamin D
DVDs Move it for MS – a DVD of exercises for people with MS (£1) MS together
With increasing interest in the role of vitamin D both in the onset of multiple sclerosis and as a treatment, this factsheet covers some of the recent research.
Books At work with MS Living with fatigue MS and me - a self-management guide to living with MS NEW MS explained MS: what does it mean for me? Sexuality and MS: a guide for women Talking with your kids about MS NEW Kids’ guide to MS - for children aged 6-10 Young person’s guide to MS - for people aged 10-16
MS factsheets Regularly updated, we now have more than 20 titles available Bowel problems Oral drugs - cladribine / fingolimod Clinically isolated syndrome NEW Depression NEW Vitamin D NEW
Chatroom transcripts Fatigue transcript NEW
Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful
Depression Depression is an under-recognised and undertreated symptom in people with MS where half of all those diagnosed will be medically depressed at some time in the illness. This factsheet looks at the causes of depression and how it can be managed. Clinically isolated syndrome A first episode of neurological symptoms can be an indicator of what may turn out to be multiple sclerosis. In the absence of a second episode or of a definite diagnosis, this is referred to as clinically isolated syndrome (CIS). This new factsheet examines the typical presentations of CIS, different assessments that might be recommended, treatments for CIS and starting disease modifying drug therapy, and risk factors associated with CIS converting to MS. These factsheets and other MS Trust publications can also be downloaded from our website or read online at www.mstrust.org.uk/publications
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
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.
Sexuality and MS - a guide for men Sexual problems are rarely discussed symptoms of MS and many men are unaware of treatments that might be available and how to discuss what they are experiencing with their partner or with a health professional. Having published Sexuality and MS - a guide for women in 2007, the MS Trust is about to start work on an equivalent resource for men. To help us make the contents and design of the resource as helpful as possible, we are asking men to complete a brief, anonymous survey about the problems they have encountered and how the new resource might be best presented.
Name Job title (if health professional) Address
Postcode Telephone number A copy of the MS Trust’s data protection policy is available on request
To request a survey, either write to the address below or visit www.mstrust.org.uk/men
Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET
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
May 2010
Inside this issue...
Welcome to the Spring Edition of Open Door
Yoga
8
The arrival of this Open Door should coincide with the General Election results and it will be interesting to see what challenges lie ahead for us all, as tackling the public finances deficit becomes a reality rather than a topic for debate. A recent survey via the MS Trust website asked 'what is your most valued source of support for your MS?' Along with close family, MS specialist nurses were top of the list. In 2001 a unique research project funded by the MS Trust at South Bank University London, demonstrated clearly the benefit of MS specialist nurses both to people with MS and in financial terms to the NHS. The research showed that having an MS specialist nurse in post could generate a net saving of over £64,000 in a year, purely from a reduction in admissions to hospital.
Bowel management
10
Gliding down
15
The MS Trust has campaigned since 1996 for MS specialist nurses. The number has grown from three to around 220, but this is still some 150 short of the number needed to support 100,000 people with MS. Yet once again MS nurse posts are under threat, easy targets for NHS cutbacks where short term gains outweigh long term benefits. MS Awareness week may have just ended, but raising awareness of the challenges of living with MS does not go away. MS nurses are a vital part of the support system, therefore the MS Trust will continue to campaign for MS nurses and support those in post, through information and education and by promoting the value of their role wherever possible. Very best wishes
Pam Macfarlane Chief Executive
Also inside: CCSVI
2
News
3
Research news
4 6
I Talking with your kids about MS
MS and me self-management
I Exercises for people with MS
MS Tissue Bank
12
Read more about these on pages 6 and 13
New from MS Trust
13
New from the MS Trust I MS and me - a guide to self-management
Wheelchair rambling 14 16
www.mstrust.org.uk
www.mstrust.org.uk
Call: 01462 476 700
Info Service news
16