T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:26
Page 2
Info Service news Self management
Pick and mix exercises
Self management is something you probably do everyday but don’t realise it. Every day you use problem solving skills, set goals and manage your stress and your time - this is self management.
The continuing popularity of our book Exercises for people with MS demonstrates the desire to find simple but effective strategies for maintaining strength and fitness. To develop this, we have explored ways to present the exercises in a more efficient and tailored manner.
In MS self management includes: I Dealing with symptoms and relapses I Being a partner with health professionals in making informed choices about medicines and treatment I Making best use of available resources I Living well and accommodating MS into your life To help you approach these issues, MS and me, a self management guide to living well with MS, will be published in the spring.
Talking to the kids MS affects not only the person with MS, but the whole family. Discussing MS with children may seem daunting. Each family is unique and each person's experience of MS is different, so there is no right or wrong way to talk about it, just as there is no ideal time. The MS Trust's new book, Talking with your kids about MS, developed with neuropsychologist Jo Johnson, looks at the concerns parents may have, some of the things children may want to know and what other parents' experiences have been. I Talking with your kids about MS will be published in the spring and joins our range of publications for families: I Kids' guide to MS - for 6-10 year olds who have a mum or dad with MS I Young person's guide to MS - for 11-16 year olds who have a parent with MS I Talking about MS - factsheet To order books, contact the MS Trust at the address below or visit www.mstrust.org.uk/publications
The new version is a set of web pages that allow you to compile a personalised programme of exercises to meet your own particular needs. The exercises are arranged in categories based both on how they are done (eg standing exercises, hand and arm exercises) and the type of problems they address (eg exercise to help with posture, with balance or to build up strength). Each exercise includes clear, attractive diagrams, an animation to illustrate the movement and the option to download the individual page. Visit the Exercises web pages at www.mstrust.org.uk/exercises
Any questions? I I I I
I've read about a new drug in the newspaper... What treatments are there for my wife's fatigue? Are my symptoms MS? How can I explain MS to my colleagues?
These are just a few examples of the hundreds of calls, emails and letters received by the MS Trust Information Service each year. Our team will gather together reliable, independent information to match your needs to help you better understand symptoms and have informed conversations with your health professionals about treatment options. Our focus is on health information, but you can ask us anything about MS. If we are unable to find an answer ourselves we will try to direct you to organisations best able to help.
February 2010
Inside this issue...
Welcome to the first edition of Open Door for 2010
The nice things in life
6
Staying smart
8
2010 will be a challenging year, full of uncertainty in the NHS, the economy and the government with an election imminent. Uncertainty is nothing new for people who have MS. Aside from the variability of MS itself, another decade has passed and people are still having to fight for the specialist treatments, services and support they need. This is unacceptable and the MS Trust will continue to campaign for more specialist services and to plug some of the gaps in information, professional education and research; areas which we know are vital to people living with MS. The start of a new year is always a good time to take a look back and it is usually this time of year when we present our Annual Review - a snapshot of our work in the previous year. This year to save both production and postage costs we have decided to make it available from our website and I hope you will be able to take a look - www.mstrust.org.uk/annual_review. Looking forward, we have enclosed our latest publication list showing all the books and resources we will have available this year. Please pass this on to anyone who may find it useful. We are committed to continuing to provide all our books free of charge, but this is only possible thanks to the generosity of many of you who send donations, buy cards and fundraise for our work - a BIG thank you to all of you for all your support.
10
Very best wishes for 2010
To ask your question, ring the Information Service on 01462 476700, email infoteam@mstrust.org.uk or write to us at the address below.
Pam Macfarlane Chief Executive
Fatigue chatroom Fatigue is the most common symptom of MS and one that can have a huge impact on the lives of people with MS. Share your thoughts and questions about fatigue with health professionals and other people with MS in our next chatroom in April. See www.mstrust.org.uk/chatrooms for details. If you are unable to make it to the chatroom on the day, post or email your questions or comments in advance to the address at the bottom of the page. If you would like an email reminder for future sessions, contact info@mstrust.org.uk
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
Also inside:
MS on a pedestal Amongst the 2,400 people who spent an hour on the fourth plinth in Trafalgar Square during 2009, Sarah Kerton and Emma Taylor used their slots to promote awareness of MS. Read more about Emma’s experience and why she did it on page 12
Registered charity no. 1088353
16
Fatigue management
www.mstrust.org.uk
www.mstrust.org.uk
Call: 01462 476 700
Vitamin D and MS
2
News
3
Research news
4
Standing up for MS
12
Supporting the MS Trust
14
Info Service news
16
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:26
Page 4
Vitamin D and MS
News
Roxanne Weber
The Shine On Scotland campaign fronted by schoolboy Ryan McLaughlin has raised interest in the role of vitamin D in MS. In November 2009, the campaign persuaded the Scottish Parliament to provide information about vitamin D to pregnant women, reflecting advice issued by NICE in England and Wales in 2008.1 But why this interest and what does the research say? It is known that MS is more common in countries further from the equator. Vitamin D is manufactured by the skin when it is exposed to sunlight. This has lead to the hypothesis that low sunlight exposure and consequent low vitamin D production increases the risk of developing MS.
Vitamin D research While the evidence to support an involvement of vitamin D in MS is still not conclusive, a number of studies have suggested that there may be a connection. I A review of blood samples taken from US military personnel when they enlisted found that levels of vitamin D in those who subsequently developed MS were lower than levels in those without the condition.2 I In laboratory experiments, researchers showed that a lack of vitamin D alters the DRB1 gene, a gene that has a direct role in the functioning of a healthy immune system. From this it is suggested that a lack of vitamin D during pregnancy and in the early years of life could increase the risk of developing the condition later in life.3 I A study of samples from 267 people with MS found that higher levels of 25-hydroxyvitamin D, the hormonal form of vitamin D found in the blood, were associated with a lower relapse rate. Low levels were associated with higher disability scores. People with progressive forms of MS had lower levels than those with relapsing remitting MS.4 I Another study of 132 people with MS found significantly lower levels of vitamin D in people experiencing a relapse than in people who were in remission.5 Despite these findings, more work is required to clarify the potential therapeutic role of vitamin D supplementation in MS.
Dietary sources of vitamin D include oily fish, eggs and fortified foods such as margarine and breakfast cereals. The best approach for supplementing in people with lower levels of vitamin D has not been established and varies depending on the individual. Short courses of high doses can be used to adjust levels, though prolonged supplementation with very high dose can lead to problems such as weakening of bones, high blood pressure and kidney problems. If you are concerned about your vitamin D levels, speak to your doctor. References 1. National Institute for Health and Clinical Excellence. Antenatal care: routine care for the healthy pregnant woman (clinical guideline 62). London:NICE;2008. 2. Munger KL, et al. Serum 25-hydroxyvitamin D levels and risk of multiple sclerosis. Journal of the American Medical Association 2006;296(23):2832-2838. 3. Ramagopalan SV, et al. Expression of the multiple sclerosis-associated MHC class II Allele HLA-DRB1*1501 is regulated by vitamin D. PLoS Genetics 2009;5(2):e1000369. 4. Smolders J, et al. Association of vitamin D metabolite levels with relapse rate and disability in multiple sclerosis. Multiple Sclerosis 2008;14(9):1220-1224.
The normal level of 25-hydroxyvitamin D, which is measured with a blood test, is generally considered to be in the region of 30-100 ng/ml.6 The Food Standards Agency (FSA) suggests a daily allowance of 25 micrograms (1000 IU) of vitamin D supplements,7 although some researchers suggest that twice this level or higher might be appropriate.8
developed by vascular surgeon Paolo Zamboni, is that an abnormal narrowing in blood vessels that take blood from the brain causes a build up of iron. This is then able to cross the blood-brain barrier and cause inflammation and damage to cells in the central nervous system. A small study found CCSVI occurred in 65 people with different types of MS, but not in a control group that included both healthy people and people with other neurological conditions. The narrowing in blood vessels can be rectified with surgery, called the 'liberation procedure'. A pilot study reports that amongst 35 people with relapsing remitting MS, 50% had no relapses in the year following surgery, compared to 27% in the period before undergoing the procedure. Participants remained on disease modifying treatments during this period, which makes the impact of the surgery harder to discern. People with progressive forms of MS showed no significant change in assessments of cognitive and motor function. Further studies of CCSVI and MS are planned in Canada and the USA. CCSVI remains a theory that poses questions about MS and this type of surgery is not without risk. Pending further research it is premature to consider it as a treatment option. Zamboni P, et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. Journal of Neurology, Neurosurgery & Psychiatry 2009;80(4):392-399.
In December, the British Medical Journal (BMJ) published the two-year interim analysis of the UK Multiple Sclerosis Risk-sharing Scheme. The Risk-sharing Scheme is the initiative that allows people with MS access to the disease modifying drugs on the NHS. It is led by the Department of Health in conjunction with the Association of British Neurologists, the MS charities, and the pharmaceutical industry. Since launching in May 2002, the Scheme has: I Initiated the development of a UK-wide network of over 70 MS specialist treatment centres which have improved the care and support available to all 100,000 people with MS across the UK. I Provided around 12,000 people with relapsing remitting MS, and in some cases with secondary progressive MS, access to the drug therapy they require. I Provided funding to increase the number of MS specialist nurses in the UK to help support all people with MS. Boggild M, et al. Multiple sclerosis risk sharing scheme: two year results of clinical cohort study with historical comparator. BMJ 2009;339:b4677.
Zamboni et al. A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency. Journal of Vascular Surgery 2009;50:1348-1358.
5. Correale J, et al. Immunomodulatory effects of vitamin D in multiple sclerosis. Brain 2009;132(5):1146-1160.
Oral MS drug research results published
6. Bowling A. Vitamin D and MS: Implications for Clinical Practice. Clinical Bulletin. New York:National MS Society;2009.
In January, the New England Journal of Medicine published results of trials of fingolimod, an oral disease modifying drug for MS. A one year phase III study (called TRANSFORMS) compared fingolimod with interferon beta 1a (Avonex) and a two-year study (FREEDOMS) compared the drug with a placebo. Both showed that fingolimod had a greater impact on reducing relapse rates and FREEDOMS also indicated that the drug reduced disability progression.
7. Food Standards Agency. Eat well, be well - Vitamin D. [cited 2009 15 Dec] Available from: http://www.eatwell.gov.uk/healthydiet/nutritionessentials/vitaminsandminerals/vitamind/
Vitamin D supplements
2
For many people, adequate levels of vitamin D are possible with reasonable exposure to sunlight and through diet. 15-20 minutes of sunshine a day during the summer months is considered adequate to maintain levels of vitamin D, although longer exposure is required if you have dark skin.
Chronic cerebro-spinal venous Two year results from insufficiency (CCSVI) the UK Multiple Sclerosis CCSVI, a theory on the cause of MS symptoms and perhaps MS itself, has been widely reported in the media. The theory, Risk-sharing Scheme
8. Holick MF. Environmental factors that influence the cutaneous production of vitamin D. American Journal of Clinical Nutrition 1995;61(3 Suppl):638S-645S.
To order the MS Trust's Vitamin D factsheet, ring 01462 476700, email info@mstrust.org.uk or visit www.mstrust.org.uk/publications.
www.mstrust.org.uk
Another oral drug, cladribine has also been shown to be more effective at reducing the relapse rate than placebo. Both drugs have been submitted for licensing in Europe and America. Decisions are not expected before 2011. If licensed, these would be the first oral disease modifying drugs for MS. For more information see www.mstrust.org.uk/atoz/oral_drugs.jsp
Call: 01462 476 700
3
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:26
Page 4
Vitamin D and MS
News
Roxanne Weber
The Shine On Scotland campaign fronted by schoolboy Ryan McLaughlin has raised interest in the role of vitamin D in MS. In November 2009, the campaign persuaded the Scottish Parliament to provide information about vitamin D to pregnant women, reflecting advice issued by NICE in England and Wales in 2008.1 But why this interest and what does the research say? It is known that MS is more common in countries further from the equator. Vitamin D is manufactured by the skin when it is exposed to sunlight. This has lead to the hypothesis that low sunlight exposure and consequent low vitamin D production increases the risk of developing MS.
Vitamin D research While the evidence to support an involvement of vitamin D in MS is still not conclusive, a number of studies have suggested that there may be a connection. I A review of blood samples taken from US military personnel when they enlisted found that levels of vitamin D in those who subsequently developed MS were lower than levels in those without the condition.2 I In laboratory experiments, researchers showed that a lack of vitamin D alters the DRB1 gene, a gene that has a direct role in the functioning of a healthy immune system. From this it is suggested that a lack of vitamin D during pregnancy and in the early years of life could increase the risk of developing the condition later in life.3 I A study of samples from 267 people with MS found that higher levels of 25-hydroxyvitamin D, the hormonal form of vitamin D found in the blood, were associated with a lower relapse rate. Low levels were associated with higher disability scores. People with progressive forms of MS had lower levels than those with relapsing remitting MS.4 I Another study of 132 people with MS found significantly lower levels of vitamin D in people experiencing a relapse than in people who were in remission.5 Despite these findings, more work is required to clarify the potential therapeutic role of vitamin D supplementation in MS.
Dietary sources of vitamin D include oily fish, eggs and fortified foods such as margarine and breakfast cereals. The best approach for supplementing in people with lower levels of vitamin D has not been established and varies depending on the individual. Short courses of high doses can be used to adjust levels, though prolonged supplementation with very high dose can lead to problems such as weakening of bones, high blood pressure and kidney problems. If you are concerned about your vitamin D levels, speak to your doctor. References 1. National Institute for Health and Clinical Excellence. Antenatal care: routine care for the healthy pregnant woman (clinical guideline 62). London:NICE;2008. 2. Munger KL, et al. Serum 25-hydroxyvitamin D levels and risk of multiple sclerosis. Journal of the American Medical Association 2006;296(23):2832-2838. 3. Ramagopalan SV, et al. Expression of the multiple sclerosis-associated MHC class II Allele HLA-DRB1*1501 is regulated by vitamin D. PLoS Genetics 2009;5(2):e1000369. 4. Smolders J, et al. Association of vitamin D metabolite levels with relapse rate and disability in multiple sclerosis. Multiple Sclerosis 2008;14(9):1220-1224.
The normal level of 25-hydroxyvitamin D, which is measured with a blood test, is generally considered to be in the region of 30-100 ng/ml.6 The Food Standards Agency (FSA) suggests a daily allowance of 25 micrograms (1000 IU) of vitamin D supplements,7 although some researchers suggest that twice this level or higher might be appropriate.8
developed by vascular surgeon Paolo Zamboni, is that an abnormal narrowing in blood vessels that take blood from the brain causes a build up of iron. This is then able to cross the blood-brain barrier and cause inflammation and damage to cells in the central nervous system. A small study found CCSVI occurred in 65 people with different types of MS, but not in a control group that included both healthy people and people with other neurological conditions. The narrowing in blood vessels can be rectified with surgery, called the 'liberation procedure'. A pilot study reports that amongst 35 people with relapsing remitting MS, 50% had no relapses in the year following surgery, compared to 27% in the period before undergoing the procedure. Participants remained on disease modifying treatments during this period, which makes the impact of the surgery harder to discern. People with progressive forms of MS showed no significant change in assessments of cognitive and motor function. Further studies of CCSVI and MS are planned in Canada and the USA. CCSVI remains a theory that poses questions about MS and this type of surgery is not without risk. Pending further research it is premature to consider it as a treatment option. Zamboni P, et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. Journal of Neurology, Neurosurgery & Psychiatry 2009;80(4):392-399.
In December, the British Medical Journal (BMJ) published the two-year interim analysis of the UK Multiple Sclerosis Risk-sharing Scheme. The Risk-sharing Scheme is the initiative that allows people with MS access to the disease modifying drugs on the NHS. It is led by the Department of Health in conjunction with the Association of British Neurologists, the MS charities, and the pharmaceutical industry. Since launching in May 2002, the Scheme has: I Initiated the development of a UK-wide network of over 70 MS specialist treatment centres which have improved the care and support available to all 100,000 people with MS across the UK. I Provided around 12,000 people with relapsing remitting MS, and in some cases with secondary progressive MS, access to the drug therapy they require. I Provided funding to increase the number of MS specialist nurses in the UK to help support all people with MS. Boggild M, et al. Multiple sclerosis risk sharing scheme: two year results of clinical cohort study with historical comparator. BMJ 2009;339:b4677.
Zamboni et al. A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency. Journal of Vascular Surgery 2009;50:1348-1358.
5. Correale J, et al. Immunomodulatory effects of vitamin D in multiple sclerosis. Brain 2009;132(5):1146-1160.
Oral MS drug research results published
6. Bowling A. Vitamin D and MS: Implications for Clinical Practice. Clinical Bulletin. New York:National MS Society;2009.
In January, the New England Journal of Medicine published results of trials of fingolimod, an oral disease modifying drug for MS. A one year phase III study (called TRANSFORMS) compared fingolimod with interferon beta 1a (Avonex) and a two-year study (FREEDOMS) compared the drug with a placebo. Both showed that fingolimod had a greater impact on reducing relapse rates and FREEDOMS also indicated that the drug reduced disability progression.
7. Food Standards Agency. Eat well, be well - Vitamin D. [cited 2009 15 Dec] Available from: http://www.eatwell.gov.uk/healthydiet/nutritionessentials/vitaminsandminerals/vitamind/
Vitamin D supplements
2
For many people, adequate levels of vitamin D are possible with reasonable exposure to sunlight and through diet. 15-20 minutes of sunshine a day during the summer months is considered adequate to maintain levels of vitamin D, although longer exposure is required if you have dark skin.
Chronic cerebro-spinal venous Two year results from insufficiency (CCSVI) the UK Multiple Sclerosis CCSVI, a theory on the cause of MS symptoms and perhaps MS itself, has been widely reported in the media. The theory, Risk-sharing Scheme
8. Holick MF. Environmental factors that influence the cutaneous production of vitamin D. American Journal of Clinical Nutrition 1995;61(3 Suppl):638S-645S.
To order the MS Trust's Vitamin D factsheet, ring 01462 476700, email info@mstrust.org.uk or visit www.mstrust.org.uk/publications.
www.mstrust.org.uk
Another oral drug, cladribine has also been shown to be more effective at reducing the relapse rate than placebo. Both drugs have been submitted for licensing in Europe and America. Decisions are not expected before 2011. If licensed, these would be the first oral disease modifying drugs for MS. For more information see www.mstrust.org.uk/atoz/oral_drugs.jsp
Call: 01462 476 700
3
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:26
Page 6
Differences in how men and women cope with MS
Research news
This Italian study of 370 people with MS (105 men and 265 women) looked for differences in the way physical disability affected aspects of quality of life in men and women. Participants completed a quality of life questionnaire and were assessed for their level of disability using the EDSS scale.
Cognitive rehabilitation Many people with MS have some degree of problem with memory, attention span or concentration at some time. Two different approaches to coping with these symptoms have been tested recently. In one study, 35 people with mild to moderate cognitive problems attended a five week course which aimed to improve understanding of cognition and teach skills and strategies to tackle these difficulties. At the end of the study, participants felt better able to cope with cognitive difficulties and were able to apply techniques they had learnt to a wider range of situations. Another study assessed a computer-based training programme with 20 people with some degree of cognitive difficulties. Half received three months intensive training aimed at improving attention, information processing and planning, whilst the other half received no treatment. The training group scored significantly higher in cognitive tests and also showed improvement in depression scale scores. Shevil E, et al. Pilot study of a cognitive intervention program for persons with multiple sclerosis. Health Education Research 2009 Aug 3. [Epub ahead of print] Flavia M, et al. Efficacy and specificity of intensive cognitive rehabilitation of attention and executive functions in multiple sclerosis. Journal of Neurological Sciences 2010;288(1-2):101-105.
For more on cognitive issues, see page 8
Short-term palliative care is cost-effective Evidence for the effectiveness of palliative care has largely been drawn from studies in cancer. The impact of palliative care on people with advanced MS and their carers and evidence for its cost-effectiveness has been sought in a study involving 46 people in south east London. Participants were either allocated immediately to the fast track palliative care team or continued with standard support services for three months before referral to palliative care. Those under the care of the fast track team fared better both psychologically and physically, as did their carers. There was also a significant reduction in care costs with fewer hospital admissions and less reliance on social services. The investigators conclude that short-term palliative care for people severely affected by MS and their carers will be cost-effective and warrants further study. Higginson IJ, et al. Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. Journal of Pain and Symptom Management 2009;38(6):816-826.
One-to-one versus group rehab
Risk of deep vein thrombosis in advanced MS
This study compared individual versus group-based physical rehabilitation programmes for people with MS. 50 volunteers were divided into two groups: the first received four one-on-one physical rehabilitation sessions and three personalised phone calls whilst the second group attended seven group-based education sessions. At the end of the eight week study, both groups had improved general health and physical activity. However, the individual therapy group showed a greater improvement in physical health whilst the group-based approach showed greater improvements in mental health. This suggests that a programme combining both approaches would be most effective.
Advanced MS often leads to loss of mobility, increasing the risk of venous thromboembolism (blood clots forming within veins, typically in the legs or lungs). As no reliable figures exist for the incidence of this complication, this study investigated the frequency of deep venous thrombosis of the legs (DVT) in 132 people with advanced MS who were permanent wheelchair users or confined to bed. DVT was found in 58 people (44%). The investigators note that despite this high incidence, little is know about those most at risk or ways to reduce the risk and highlight the need for further research.
Plow MA, et al. Comparing individualized rehabilitation to a group wellness intervention for persons with multiple sclerosis. American Journal of Health Promotion 2009;24(1):23-26.
Arpaia G, et al. Risk of deep venous thrombosis (DVT) in bedridden or wheelchair-bound multiple sclerosis patients: A prospective study. Thrombosis Research 2009 Jul 27. [Epub ahead of print]
4
www.mstrust.org.uk
Overall, the group had a lower quality of life (irrespective of EDSS score) than the general population. Quality of life fell as disability increased. Quality of life was more reduced in men than in women, particularly for mental well-being and at greater disability. These results would suggest that while MS has a major impact on quality of life, women seem better at coping with its effects than men. Casetta I, et al. Gender differences in health-related quality of life in multiple sclerosis. Multiple Sclerosis 2009;15(11):1339-1346.
Disease modifying drugs and parenthood Although people are advised to discontinue disease modifying treatments (DMTs) prior to starting a family, there is little data on the effects on parenthood, particularly in relation to fathers with MS. This study investigated pregnancies fathered by men taking DMTs. A questionnaire was sent out via a German outpatient MS clinic and captured information about 46 pregnancies. Despite the small numbers, the results suggest that pregnancy fathered by men taking DMTs is safe. The average birth weight of babies was the same as that for the general population. The study also recorded the birth weight of babies born to women with MS and found that this tended to be lower regardless of whether the mothers were receiving DMTs or not. Hellwig K, et al. Parenthood and immunomodulation in patients with multiple sclerosis. Journal of Neurology 2009; [Epub ahead of print].
Modafanil for fatigue Previous studies investigating the effectiveness of modafinil (Provigil) in treating fatigue have produced conflicting results. In this UK study, investigators audited the effectiveness of modafinil in 39 people with MS-related fatigue and found that those experiencing excessive daytime sleepiness perceived greatest benefit from the treatment. Littleton ET, et al. Modafinil for multiple sclerosis fatigue: Does it work? Clinical Neurology and Neurosurgery 2009 Oct 16. [Epub ahead of print]
MS and birth month Research suggests that babies born in spring face an increased risk of developing multiple sclerosis later in life. The researchers looked at records of 1,300 people with MS born in the west of Scotland between 1922 and 1992. A much higher than expected proportion was born in March, April or May. In contrast, a lower proportion of those born in the autumn, particularly in November went on to develop MS. The study reflects earlier studies that have drawn a connection with vitamin D levels in the mother. A principal source of vitamin D is regular exposure to sunlight. For children born in April, the last stages of the pregnancy will have coincided with the darkest months of the year. Bayes HK, et al.Timing of birth and risk of multiple sclerosis in the Scottish population.European Neurology 2009;63(1):36-40.
Personal information on YouTube analysed The Internet has become a major source of health information. A variety of resources, such as videos, blogs and social networking sites, encourage people to post personal health information. Researchers have evaluated information generated by people with MS found within YouTube video comments. They took a random sample of 25 videos and analysed their comments. Out of 320 comments, 70 contained personal health information concerning their creators or a third party (eg relatives). The researchers point out that by looking for the same web alias on different sites, such as Flickr or Facebook, a ‘curious’ reader could piece together detailed personal information and possibly identify a comment’s author. Theoretically, this might be used to deny health insurance coverage or have implications for job applications. They also found that although some commenters’ YouTube profiles had been deleted, their comments remained. The researchers were surprised by the number of videos and comments relating to medications, especially Tysabri (natalizumab), and they drew attention to the potential legal and ethical implications of giving medical advice through YouTube. Fernandez-Luque L, et al. An analysis of personal medical information disclosed in YouTube videos created by patients with multiple sclerosis. Studies in Health Technology and Informatics 2009;150:292-296.
Have you signed up for weekly research news updates? Send your email address to info@mstrust.org.uk
Call: 01462 476 700
5
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:26
Page 6
Differences in how men and women cope with MS
Research news
This Italian study of 370 people with MS (105 men and 265 women) looked for differences in the way physical disability affected aspects of quality of life in men and women. Participants completed a quality of life questionnaire and were assessed for their level of disability using the EDSS scale.
Cognitive rehabilitation Many people with MS have some degree of problem with memory, attention span or concentration at some time. Two different approaches to coping with these symptoms have been tested recently. In one study, 35 people with mild to moderate cognitive problems attended a five week course which aimed to improve understanding of cognition and teach skills and strategies to tackle these difficulties. At the end of the study, participants felt better able to cope with cognitive difficulties and were able to apply techniques they had learnt to a wider range of situations. Another study assessed a computer-based training programme with 20 people with some degree of cognitive difficulties. Half received three months intensive training aimed at improving attention, information processing and planning, whilst the other half received no treatment. The training group scored significantly higher in cognitive tests and also showed improvement in depression scale scores. Shevil E, et al. Pilot study of a cognitive intervention program for persons with multiple sclerosis. Health Education Research 2009 Aug 3. [Epub ahead of print] Flavia M, et al. Efficacy and specificity of intensive cognitive rehabilitation of attention and executive functions in multiple sclerosis. Journal of Neurological Sciences 2010;288(1-2):101-105.
For more on cognitive issues, see page 8
Short-term palliative care is cost-effective Evidence for the effectiveness of palliative care has largely been drawn from studies in cancer. The impact of palliative care on people with advanced MS and their carers and evidence for its cost-effectiveness has been sought in a study involving 46 people in south east London. Participants were either allocated immediately to the fast track palliative care team or continued with standard support services for three months before referral to palliative care. Those under the care of the fast track team fared better both psychologically and physically, as did their carers. There was also a significant reduction in care costs with fewer hospital admissions and less reliance on social services. The investigators conclude that short-term palliative care for people severely affected by MS and their carers will be cost-effective and warrants further study. Higginson IJ, et al. Is short-term palliative care cost-effective in multiple sclerosis? A randomized phase II trial. Journal of Pain and Symptom Management 2009;38(6):816-826.
One-to-one versus group rehab
Risk of deep vein thrombosis in advanced MS
This study compared individual versus group-based physical rehabilitation programmes for people with MS. 50 volunteers were divided into two groups: the first received four one-on-one physical rehabilitation sessions and three personalised phone calls whilst the second group attended seven group-based education sessions. At the end of the eight week study, both groups had improved general health and physical activity. However, the individual therapy group showed a greater improvement in physical health whilst the group-based approach showed greater improvements in mental health. This suggests that a programme combining both approaches would be most effective.
Advanced MS often leads to loss of mobility, increasing the risk of venous thromboembolism (blood clots forming within veins, typically in the legs or lungs). As no reliable figures exist for the incidence of this complication, this study investigated the frequency of deep venous thrombosis of the legs (DVT) in 132 people with advanced MS who were permanent wheelchair users or confined to bed. DVT was found in 58 people (44%). The investigators note that despite this high incidence, little is know about those most at risk or ways to reduce the risk and highlight the need for further research.
Plow MA, et al. Comparing individualized rehabilitation to a group wellness intervention for persons with multiple sclerosis. American Journal of Health Promotion 2009;24(1):23-26.
Arpaia G, et al. Risk of deep venous thrombosis (DVT) in bedridden or wheelchair-bound multiple sclerosis patients: A prospective study. Thrombosis Research 2009 Jul 27. [Epub ahead of print]
4
www.mstrust.org.uk
Overall, the group had a lower quality of life (irrespective of EDSS score) than the general population. Quality of life fell as disability increased. Quality of life was more reduced in men than in women, particularly for mental well-being and at greater disability. These results would suggest that while MS has a major impact on quality of life, women seem better at coping with its effects than men. Casetta I, et al. Gender differences in health-related quality of life in multiple sclerosis. Multiple Sclerosis 2009;15(11):1339-1346.
Disease modifying drugs and parenthood Although people are advised to discontinue disease modifying treatments (DMTs) prior to starting a family, there is little data on the effects on parenthood, particularly in relation to fathers with MS. This study investigated pregnancies fathered by men taking DMTs. A questionnaire was sent out via a German outpatient MS clinic and captured information about 46 pregnancies. Despite the small numbers, the results suggest that pregnancy fathered by men taking DMTs is safe. The average birth weight of babies was the same as that for the general population. The study also recorded the birth weight of babies born to women with MS and found that this tended to be lower regardless of whether the mothers were receiving DMTs or not. Hellwig K, et al. Parenthood and immunomodulation in patients with multiple sclerosis. Journal of Neurology 2009; [Epub ahead of print].
Modafanil for fatigue Previous studies investigating the effectiveness of modafinil (Provigil) in treating fatigue have produced conflicting results. In this UK study, investigators audited the effectiveness of modafinil in 39 people with MS-related fatigue and found that those experiencing excessive daytime sleepiness perceived greatest benefit from the treatment. Littleton ET, et al. Modafinil for multiple sclerosis fatigue: Does it work? Clinical Neurology and Neurosurgery 2009 Oct 16. [Epub ahead of print]
MS and birth month Research suggests that babies born in spring face an increased risk of developing multiple sclerosis later in life. The researchers looked at records of 1,300 people with MS born in the west of Scotland between 1922 and 1992. A much higher than expected proportion was born in March, April or May. In contrast, a lower proportion of those born in the autumn, particularly in November went on to develop MS. The study reflects earlier studies that have drawn a connection with vitamin D levels in the mother. A principal source of vitamin D is regular exposure to sunlight. For children born in April, the last stages of the pregnancy will have coincided with the darkest months of the year. Bayes HK, et al.Timing of birth and risk of multiple sclerosis in the Scottish population.European Neurology 2009;63(1):36-40.
Personal information on YouTube analysed The Internet has become a major source of health information. A variety of resources, such as videos, blogs and social networking sites, encourage people to post personal health information. Researchers have evaluated information generated by people with MS found within YouTube video comments. They took a random sample of 25 videos and analysed their comments. Out of 320 comments, 70 contained personal health information concerning their creators or a third party (eg relatives). The researchers point out that by looking for the same web alias on different sites, such as Flickr or Facebook, a ‘curious’ reader could piece together detailed personal information and possibly identify a comment’s author. Theoretically, this might be used to deny health insurance coverage or have implications for job applications. They also found that although some commenters’ YouTube profiles had been deleted, their comments remained. The researchers were surprised by the number of videos and comments relating to medications, especially Tysabri (natalizumab), and they drew attention to the potential legal and ethical implications of giving medical advice through YouTube. Fernandez-Luque L, et al. An analysis of personal medical information disclosed in YouTube videos created by patients with multiple sclerosis. Studies in Health Technology and Informatics 2009;150:292-296.
Have you signed up for weekly research news updates? Send your email address to info@mstrust.org.uk
Call: 01462 476 700
5
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:26
Page 8
MS has also opened doors for me. MS has made me appreciate those things in life that I would not have noticed before, and has given me more than it has taken away. I love my life and would not change a thing… except I would like my daughters to clean their rooms, pick up their washing and clean the bathroom after themselves. So you see, our life is not all that different from that of a ‘normal’ family.
The nice things in life
When I arrive home, dog in hand (or wrapped around my legs), it’s time to rest a while. David and I have a coffee together, extra caffeine please, washed down with a few more pills (I find it does help to get through the day) and instead of comparing leg spasms or which bits are numb today, we do normal things like decide what to have for dinner. David switches into his electric wheelchair and shops for the delicacies to be found in our local supermarket, and I take an hour or two to shower and drink more coffee before jumping onto the quad bike, (electric scooter) and making the dog exercise. She quite likes it but I’m hard to keep up with these days! No slacking, because pugs are prone to getting fat.
Anne Brennan
In the beginning I would have been mortified to think that at age 33 I would be riding around on an electric scooter, because they are just for ‘old’ people aren’t they? Well, I think I make it look pretty good. No arm rests, no rear view mirrors, no basket on the front. It’s minimal, it’s fast and I go anywhere I want to on it. It does have a very loud horn though, which I fully intend to use one day. I would also have been mortified to think that I would have been wearing a top of the line carbon fibre leg splint, but wearing one I am. The up side is that I no longer fall over my own feet several times a day and I get to go shoe shopping (doctor’s orders) for shoes that fit the splint. Also my ankle doesn’t feel like it’s breaking anymore, which is good. Typically my day starts as I regain consciousness at approximately 7.45am, following calls from my children to “get up! It’s time to take us to school!” So, after gulping down my tea, tablets and toast lovingly prepared for me by my husband, I check my pyjamas are looking presentable, tie up the tangles in my hair, grab the dog, stumble out of the door to the car, then back to look for wherever I left the keys, and finally drive the girls to school. If it’s a nice day I like to wind down the windows and sing very badly and very loud; I have learned not to be embarrassed about things.
My husband’s brand of MS is different from my own. He wakes up very early and makes the packed lunches, makes sure that those who like Frubes in their lunches get them, and those who dislike mayonnaise get none, and for the ones that prefer cold, hard cash for lunch, it is there. David has had MS for seventeen years and I have had it for five. When we met I was going through my diagnosis and he was my support; he understood me and taught me that life does not end with a diagnosis of MS. MS hurts, MS is horrible, and MS takes away a lot of things. All that is true, however
David has had MS for seventeen years and I have had it for five. When we met I was going through my diagnosis and he was my support; he understood me and taught me that life does not end with a diagnosis of MS 6
www.mstrust.org.uk
Today is Tuesday, which means it’s vacuuming day. Monday is bathrooms, Wednesdays are for… whatever. Nobody can live life like that, but my point is, I have had to learn to pace myself because if I do too much one day I pay for it for the next three. Before long it’s time to pick up the children from school. First thing to do is check with David what day of the week it is and then ponder for a while over which after school clubs are running and which child does after school clubs! Once that is sorted, I get back into the car and pick up the children from their various schools and activities. When home, it’s time for me to rest again. The slightest things tire me. Writing this article is tiring. My wrists are aching and my eyes are stabbing me but I am enjoying putting things down on paper. Achieving something, no matter how simple it used to be, is no longer easy, and that is why it’s more fun. I notice small things and enjoy small achievements.
Achieving something, no matter how simple it used to be, is no longer easy, and that is why it’s more fun. I notice small things and enjoy small achievements. David and I cook together. We talk. He opens the bottles and cans because my wrists are weak, and I stir the pans because he is only three feet tall when in his wheelchair. Whichever one feels the safest with a knife cuts the vegetables and if neither feel safe with a sharp knife we just cook something different. We have learned many things you can do safely with a tin of tomatoes and a pack of spaghetti! Over dinner the kids laugh, they bicker, they talk about their day, or they refuse to talk about their day, we joke about the dog being stupid. ‘Pudding day’ is strictly Fridays, however we ‘regularly break the rules, because rules like that are made to be broken. Clearing up after dinner is exhausting. It’s something we’d rather put off, but that can’t be done. Life has to be normal and preferably hygienic. The trick is to housetrain children to help with these things. After dinner is the time when I really go flat, however it’s not the time for more ‘wake up’ pills or coffee because it’s nice to sleep at night as well as during the day. Homework has to be done, help needs to be given. Thankfully, children are children and without a doubt they are the reason we get up every day and enjoy every day, no matter what that day may bring. Our day closes at about 8pm with us kissing the kids goodnight before we go to bed, reminding them to switch off all the lights and make sure the alarm is set. I take the bedtime tablets which gently drift me back into unconsciousness once again until the screams for hair straighteners and not making them late for school begin again. It’s our life; it’s not really that different from anybody else’s. I know MS is always going to be here, marching on the way it does. Thankfully however, small things happen every day which make us smile and those things will also be constant, and will always be the most significant. Our lives are normal. We are both parents, I am a sister, David is a brother. We are husband and wife. We have each other.
See page 16 for information on books for families affected by MS
Call: 01462 476 700
7
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:26
Page 8
MS has also opened doors for me. MS has made me appreciate those things in life that I would not have noticed before, and has given me more than it has taken away. I love my life and would not change a thing… except I would like my daughters to clean their rooms, pick up their washing and clean the bathroom after themselves. So you see, our life is not all that different from that of a ‘normal’ family.
The nice things in life
When I arrive home, dog in hand (or wrapped around my legs), it’s time to rest a while. David and I have a coffee together, extra caffeine please, washed down with a few more pills (I find it does help to get through the day) and instead of comparing leg spasms or which bits are numb today, we do normal things like decide what to have for dinner. David switches into his electric wheelchair and shops for the delicacies to be found in our local supermarket, and I take an hour or two to shower and drink more coffee before jumping onto the quad bike, (electric scooter) and making the dog exercise. She quite likes it but I’m hard to keep up with these days! No slacking, because pugs are prone to getting fat.
Anne Brennan
In the beginning I would have been mortified to think that at age 33 I would be riding around on an electric scooter, because they are just for ‘old’ people aren’t they? Well, I think I make it look pretty good. No arm rests, no rear view mirrors, no basket on the front. It’s minimal, it’s fast and I go anywhere I want to on it. It does have a very loud horn though, which I fully intend to use one day. I would also have been mortified to think that I would have been wearing a top of the line carbon fibre leg splint, but wearing one I am. The up side is that I no longer fall over my own feet several times a day and I get to go shoe shopping (doctor’s orders) for shoes that fit the splint. Also my ankle doesn’t feel like it’s breaking anymore, which is good. Typically my day starts as I regain consciousness at approximately 7.45am, following calls from my children to “get up! It’s time to take us to school!” So, after gulping down my tea, tablets and toast lovingly prepared for me by my husband, I check my pyjamas are looking presentable, tie up the tangles in my hair, grab the dog, stumble out of the door to the car, then back to look for wherever I left the keys, and finally drive the girls to school. If it’s a nice day I like to wind down the windows and sing very badly and very loud; I have learned not to be embarrassed about things.
My husband’s brand of MS is different from my own. He wakes up very early and makes the packed lunches, makes sure that those who like Frubes in their lunches get them, and those who dislike mayonnaise get none, and for the ones that prefer cold, hard cash for lunch, it is there. David has had MS for seventeen years and I have had it for five. When we met I was going through my diagnosis and he was my support; he understood me and taught me that life does not end with a diagnosis of MS. MS hurts, MS is horrible, and MS takes away a lot of things. All that is true, however
David has had MS for seventeen years and I have had it for five. When we met I was going through my diagnosis and he was my support; he understood me and taught me that life does not end with a diagnosis of MS 6
www.mstrust.org.uk
Today is Tuesday, which means it’s vacuuming day. Monday is bathrooms, Wednesdays are for… whatever. Nobody can live life like that, but my point is, I have had to learn to pace myself because if I do too much one day I pay for it for the next three. Before long it’s time to pick up the children from school. First thing to do is check with David what day of the week it is and then ponder for a while over which after school clubs are running and which child does after school clubs! Once that is sorted, I get back into the car and pick up the children from their various schools and activities. When home, it’s time for me to rest again. The slightest things tire me. Writing this article is tiring. My wrists are aching and my eyes are stabbing me but I am enjoying putting things down on paper. Achieving something, no matter how simple it used to be, is no longer easy, and that is why it’s more fun. I notice small things and enjoy small achievements.
Achieving something, no matter how simple it used to be, is no longer easy, and that is why it’s more fun. I notice small things and enjoy small achievements. David and I cook together. We talk. He opens the bottles and cans because my wrists are weak, and I stir the pans because he is only three feet tall when in his wheelchair. Whichever one feels the safest with a knife cuts the vegetables and if neither feel safe with a sharp knife we just cook something different. We have learned many things you can do safely with a tin of tomatoes and a pack of spaghetti! Over dinner the kids laugh, they bicker, they talk about their day, or they refuse to talk about their day, we joke about the dog being stupid. ‘Pudding day’ is strictly Fridays, however we ‘regularly break the rules, because rules like that are made to be broken. Clearing up after dinner is exhausting. It’s something we’d rather put off, but that can’t be done. Life has to be normal and preferably hygienic. The trick is to housetrain children to help with these things. After dinner is the time when I really go flat, however it’s not the time for more ‘wake up’ pills or coffee because it’s nice to sleep at night as well as during the day. Homework has to be done, help needs to be given. Thankfully, children are children and without a doubt they are the reason we get up every day and enjoy every day, no matter what that day may bring. Our day closes at about 8pm with us kissing the kids goodnight before we go to bed, reminding them to switch off all the lights and make sure the alarm is set. I take the bedtime tablets which gently drift me back into unconsciousness once again until the screams for hair straighteners and not making them late for school begin again. It’s our life; it’s not really that different from anybody else’s. I know MS is always going to be here, marching on the way it does. Thankfully however, small things happen every day which make us smile and those things will also be constant, and will always be the most significant. Our lives are normal. We are both parents, I am a sister, David is a brother. We are husband and wife. We have each other.
See page 16 for information on books for families affected by MS
Call: 01462 476 700
7
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:26
Page 10
Staying smart and staying afloat
“When I was diagnosed,” said another lady, “I had a very stressful job where I had to spin a lot of plates.” It had become commonplace for her to lose the thread of a thought, leaving her with “a horrible, sinking feeling.”
StayingSmart
Jeffrey N Gingold To a casual observer it might appear that we are an ocean apart. When the MS Trust asked me to participate in a filmed group discussion, regarding the cognitive challenges of multiple sclerosis, the Atlantic distance between my home in the United States and London vanished. MS is not halted by a shoreline and neither are the efforts to cope with it. In fact, those of us living with multiple sclerosis are sitting next to each other in the same boat, enduring stealth cognitive slams from MS lesions. Since at least half of the MS population is faced with thinking difficulties, there is no reason to remain silent on the turbulent ship. There are mental life jackets, but each person with MS needs to find the one that fits them. Discovering what keeps an MS mind well connected begins with acknowledging thinking difficulties and then learning successful coping tactics, often from others in the MS community. Were you told to handle MS setbacks by yourself? Probably not. Wouldn’t you ask for directions in a foreign city and rely on those who know the way? There is nothing wrong with letting someone else drive, just like taking a taxi. Arriving in London, I realised that my loss of presence in an MS cognitive moment is very much like experiencing a taxi ride in London. En route to the hotel for the MS Trust presentation, our driver noticed our American accents and asked if we enjoyed driving on the ‘other side’ of the road. My daughters, Lauren and Meredith, were thrilled by the experience of the driver sitting on the right side of the vehicle and driving on the left side of the road backwards to us. I chose to not contemplate how I would safely operate a car in this mirrored existence and gladly accepted the assistance of the driver to navigate the streets. To the gleeful squeals of our girls, the driver stated “but you prefer to drive over here, don’t you?” He playfully careened the taxi into the right lane and zoomed toward the on-coming cars. Just short of sending the terrified traffic onto the sidewalk, he cut back to the left lane. My cognitive moments are like that, suddenly forgetting what I am doing or losing my place in a conversation or location, finding myself on the ‘other picture: XhyraGraf side’ of the road and unsure what to do next.
8
Group discussion On that warm, blue sky day in June, they came from across the country and battled trains and Tubes to share their MS cognitive experiences. The MS Trust had recently launched its cutting-edge website www.stayingsmart.org.uk as an open invitation for the MS community to ‘learn, build and share’ a better cognitive understanding. This interactive site would assemble the best techniques to handle the MS cognitive challenges that are privately experienced by people with MS. Make no mistake about it - there is an invisible stigma about cognitive challenges. It is difficult for people to move out of their initial denial phase when they are not educated about that part of MS and their doctor won’t go there. If that discussion never starts, then the patient is caught in a circle of denial, leading to more denial. As I sat down for the presentation with a microphone clipped inside my shirt collar, the cameras began to roll and I wondered whether the attendees would run silent and slip into that denial. When asked whether anyone had any tips or tricks to share, the outpouring of personal cognitive skills began to flow. Collectively, they kicked open the door of MS cognitive discussion.
“Lists are very good, lists and lists and lists,” said a woman, as she emphasised keeping track of thoughts, as well as remembering where the lists are placed for future reference. Another woman stated that when cognitive problems began for her, she was unsure whether it was simply related to her fatigue.
www.mstrust.org.uk
Even though I was thousands of miles from home, the conversation mirrored the MS community in my neighbourhood. Those who are coming to grips with mental impediments are surprised to learn that they are not alone in their word finding difficulties, loss of concentration, mental fatigue and other untimely cognitive symptoms. Actually, it is a crowded room. “You think that you’re just imagining it all,” stated another man with MS. The concerns were real and the level of honesty was astounding. He noted that “to lose being a ‘thinker’ can be the scariest thing about MS. Heads in the room began to nod in strong agreement. Others discussed the loss of short-term memory and the methods for delegating tasks to other people, whether at home or work. More head nods. Wanting to keep those bewildering cognitive moments to yourself tends to make matters worse, especially when others can’t see the mental shutdown. Whether the word is caught on the tip of your tongue, conversations are confounded or you lost a train of thought, others may not understand the cognitive derailment. The jammed process is invisible, except for the frustration registered on your face. When it is taking you more time to accomplish less at work or on home projects, simply because you feel overwhelmed by multi-task details that were once manageable, this is also your MS, but you are not alone. Many of us dealing with MS have been there too. A lady stated how her husband is far more patient now that he understands why she suddenly changes subjects in the middle of a conversation without even being aware of it. By sharing her experiences with MS cognitive misdirection, their relationship avoids collateral damage.
There is a new safe harbour to address your concerns, which will place the maps and tools in your hands to better navigate the cognitive turmoil of MS. When you look into your private soul, discover that you are at your best when you share and help another. That is the purpose and appeal of this website, since it is designed to help any person with MS to get their thoughts back on track. In this vast and confounding ocean, the steady boat is the MS Trust and the calm port is its new StayingSmart website for cognitive discussion. Know that whatever cognitive problem that you may face, there may already be an answer addressed by others who have already landed there. That day in London, many individuals from the MS community reached out with an honest discussion. Their personal coping strategies are all there on the site and the video clips are easily accessible to the MS community at large. They are brave to open their private stories and share their mental sharpening techniques, so that others dealing with MS might benefit from the on-point direction - hold fast to a vital life with your families and friends. Whether in MS high seas, calm rivers or running against the tide, check out the cognitive sharing in your midst and begin to enjoy the benefits of sitting next to each other - smooth sailing and stay smart.
Jeffrey Gingold is an advocate for people living with MS and experiencing cognitive problems. He is the author of the books Facing the cognitive challenges of multiple sclerosis and Mental sharpening stones: manage the cognitive challenges of multiple sclerosis Visit the StayingSmart website at www.stayingsmart.org.uk
Call: 01462 476 700
9
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:26
Page 10
Staying smart and staying afloat
“When I was diagnosed,” said another lady, “I had a very stressful job where I had to spin a lot of plates.” It had become commonplace for her to lose the thread of a thought, leaving her with “a horrible, sinking feeling.”
StayingSmart
Jeffrey N Gingold To a casual observer it might appear that we are an ocean apart. When the MS Trust asked me to participate in a filmed group discussion, regarding the cognitive challenges of multiple sclerosis, the Atlantic distance between my home in the United States and London vanished. MS is not halted by a shoreline and neither are the efforts to cope with it. In fact, those of us living with multiple sclerosis are sitting next to each other in the same boat, enduring stealth cognitive slams from MS lesions. Since at least half of the MS population is faced with thinking difficulties, there is no reason to remain silent on the turbulent ship. There are mental life jackets, but each person with MS needs to find the one that fits them. Discovering what keeps an MS mind well connected begins with acknowledging thinking difficulties and then learning successful coping tactics, often from others in the MS community. Were you told to handle MS setbacks by yourself? Probably not. Wouldn’t you ask for directions in a foreign city and rely on those who know the way? There is nothing wrong with letting someone else drive, just like taking a taxi. Arriving in London, I realised that my loss of presence in an MS cognitive moment is very much like experiencing a taxi ride in London. En route to the hotel for the MS Trust presentation, our driver noticed our American accents and asked if we enjoyed driving on the ‘other side’ of the road. My daughters, Lauren and Meredith, were thrilled by the experience of the driver sitting on the right side of the vehicle and driving on the left side of the road backwards to us. I chose to not contemplate how I would safely operate a car in this mirrored existence and gladly accepted the assistance of the driver to navigate the streets. To the gleeful squeals of our girls, the driver stated “but you prefer to drive over here, don’t you?” He playfully careened the taxi into the right lane and zoomed toward the on-coming cars. Just short of sending the terrified traffic onto the sidewalk, he cut back to the left lane. My cognitive moments are like that, suddenly forgetting what I am doing or losing my place in a conversation or location, finding myself on the ‘other picture: XhyraGraf side’ of the road and unsure what to do next.
8
Group discussion On that warm, blue sky day in June, they came from across the country and battled trains and Tubes to share their MS cognitive experiences. The MS Trust had recently launched its cutting-edge website www.stayingsmart.org.uk as an open invitation for the MS community to ‘learn, build and share’ a better cognitive understanding. This interactive site would assemble the best techniques to handle the MS cognitive challenges that are privately experienced by people with MS. Make no mistake about it - there is an invisible stigma about cognitive challenges. It is difficult for people to move out of their initial denial phase when they are not educated about that part of MS and their doctor won’t go there. If that discussion never starts, then the patient is caught in a circle of denial, leading to more denial. As I sat down for the presentation with a microphone clipped inside my shirt collar, the cameras began to roll and I wondered whether the attendees would run silent and slip into that denial. When asked whether anyone had any tips or tricks to share, the outpouring of personal cognitive skills began to flow. Collectively, they kicked open the door of MS cognitive discussion.
“Lists are very good, lists and lists and lists,” said a woman, as she emphasised keeping track of thoughts, as well as remembering where the lists are placed for future reference. Another woman stated that when cognitive problems began for her, she was unsure whether it was simply related to her fatigue.
www.mstrust.org.uk
Even though I was thousands of miles from home, the conversation mirrored the MS community in my neighbourhood. Those who are coming to grips with mental impediments are surprised to learn that they are not alone in their word finding difficulties, loss of concentration, mental fatigue and other untimely cognitive symptoms. Actually, it is a crowded room. “You think that you’re just imagining it all,” stated another man with MS. The concerns were real and the level of honesty was astounding. He noted that “to lose being a ‘thinker’ can be the scariest thing about MS. Heads in the room began to nod in strong agreement. Others discussed the loss of short-term memory and the methods for delegating tasks to other people, whether at home or work. More head nods. Wanting to keep those bewildering cognitive moments to yourself tends to make matters worse, especially when others can’t see the mental shutdown. Whether the word is caught on the tip of your tongue, conversations are confounded or you lost a train of thought, others may not understand the cognitive derailment. The jammed process is invisible, except for the frustration registered on your face. When it is taking you more time to accomplish less at work or on home projects, simply because you feel overwhelmed by multi-task details that were once manageable, this is also your MS, but you are not alone. Many of us dealing with MS have been there too. A lady stated how her husband is far more patient now that he understands why she suddenly changes subjects in the middle of a conversation without even being aware of it. By sharing her experiences with MS cognitive misdirection, their relationship avoids collateral damage.
There is a new safe harbour to address your concerns, which will place the maps and tools in your hands to better navigate the cognitive turmoil of MS. When you look into your private soul, discover that you are at your best when you share and help another. That is the purpose and appeal of this website, since it is designed to help any person with MS to get their thoughts back on track. In this vast and confounding ocean, the steady boat is the MS Trust and the calm port is its new StayingSmart website for cognitive discussion. Know that whatever cognitive problem that you may face, there may already be an answer addressed by others who have already landed there. That day in London, many individuals from the MS community reached out with an honest discussion. Their personal coping strategies are all there on the site and the video clips are easily accessible to the MS community at large. They are brave to open their private stories and share their mental sharpening techniques, so that others dealing with MS might benefit from the on-point direction - hold fast to a vital life with your families and friends. Whether in MS high seas, calm rivers or running against the tide, check out the cognitive sharing in your midst and begin to enjoy the benefits of sitting next to each other - smooth sailing and stay smart.
Jeffrey Gingold is an advocate for people living with MS and experiencing cognitive problems. He is the author of the books Facing the cognitive challenges of multiple sclerosis and Mental sharpening stones: manage the cognitive challenges of multiple sclerosis Visit the StayingSmart website at www.stayingsmart.org.uk
Call: 01462 476 700
9
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:27
Page 12
Secondary fatigue
Fatigue management in MS Jane Currie
Secondary fatigue is not unique to MS. It relates to more general factors that can affect energy levels, eg pain/spasm leading to sleep problems. Here is a brief list of areas that are important when considering fatigue and its possible causes.
Medication What are the side effects of your prescribed medication? Is tiredness one of them and, if so, are there any alternatives? Alison Nock and Vicky Slingsby, MS Specialist Occupational Therapists, Poole MS Service As occupational therapists (OTs) working in an MS service, the topic of fatigue is discussed on an almost daily basis. The statistics suggest that over 85% of people with MS experience fatigue so it is not surprising that this is one of the most talked about symptoms. One of the challenging and frustrating aspects of MS fatigue is the invisible nature that it takes, as this can lead to misunderstanding and misinterpretation with comments like “but you look so well!”
Infection
Cognitive fatigue At times of fatigue, some people describe difficulties concentrating and remembering things. This is often referred to as a form of mental or cognitive fatigue. The MS Trust has a website called StayingSmart that has some useful tips on managing cognitive problems.2
MS fatigue can be difficult to describe. It is defined as: “A subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual or desired activities”1
Environmental factors Are there changes that can be made in your environment, such as rearranging work surfaces or making use of labour saving devices that can make tasks easier to carry out?
Primary fatigue
Anxiety and stress
Primary fatigue is directly related to damage or inflammation affecting the myelin in the central nervous system along with altered immune or endocrine function.
Is stress playing a part in draining energy? This needs to be considered in the whole picture. There are many other factors in life which can affect energy levels and it is helpful to take the time out to identify all the relevant factors before looking at how to manage fatigue.
Short-circuiting fatigue This is where the effort of doing a repetitive task becomes more difficult over time to the point of needing to stop and have an enforced rest. The good news is that it usually improves after a short rest.
So how can fatigue be managed?
Lassitude
www.mstrust.org.uk
Susan Sermoneta
This is an overwhelming sensation of tiredness that sweeps over the body and is often unrelated to the task that you have just been doing.
10
Do you have problems getting to sleep? Is waking in the night a problem or is there too much sleep in the day? It can be really helpful to take a close look at your sleep pattern and factors affecting this.
Is there a pattern of pushing yourself at every opportunity so as not to be ‘giving in to fatigue’ or has the fear of fatigue or difficulties with mobility led to deconditioning? It is about getting a balance here.
The mechanisms underlying MS fatigue are not fully understood. The literature separates the causes into primary and secondary factors.
This is brought on by heat when there is a rise in the body’s core temperature. People have talked about enjoying the sun, lying on a sun-bed, and then not being able to get up! Or for some it might be a hot bath that depletes energy.
Sleep disturbance
Exertion/de-conditioning
Finding a way to communicate the effects MS fatigue can have is useful, in terms of helping significant others understand and thus support the fatigue management process.
Heat sensitive fatigue
Are there any signs of infection? These can affect fatigue levels and need to be either ruled out or treated as soon as possible.
A large part of fatigue management may be regarded as common sense, however there is a difference between knowing something and actually incorporating it into everyday life. For example, we know from research that it is beneficial to have our ‘five a day’ and take regular exercise but putting it into practice doesn’t always happen! So it is important that fatigue management goes beyond the theory and gets put into practice. The MS Trust’s book Living with fatigue gives a good introduction to managing fatigue.3
A good starting point is to complete a fatigue diary over a few days to provide a real picture of what is happening. An OT can help with identifying a suitable way to record this information. The diary can help to identify how/if certain activities affect fatigue, how long recovery takes and what reduces fatigue. The great thing about a diary is that it can be repeated after some changes have been made to see how things are going, as it is all too easy to lose sight of where you started from and the progress you have made. The next stage would be to consider using some energy conservation strategies. The principles of rest and pacing are key aspects of energy conservation. Some people really struggle with the notion of rest as it doesn’t always fit into Western cultural values, which seem to promote busyness and keeping going as long as you can! Comments such as ‘if I rest I feel lazy’ and ‘I feel guilty if I rest as I am not pulling my weight’ often crop up and can get in the way of putting effective fatigue management into practice. Sometimes thinking about what you would advise a friend can help to cast a fresh light on such matters. Getting to know how your fatigue levels relate to specific tasks can be helpful in learning to rest before you get tired, as then there is likely to be less payback time. Sometimes payback is worth it; for example, if it has been an enjoyable, much anticipated event. However, if payback happens regularly as a result of overdoing mundane everyday activities, it might be worth questioning this approach. Prioritisation is about identifying what you want to use your energy for and finding a way to manage this. This can be achieved by using pacing techniques in conjunction with breaking tasks down into manageable chunks. An OT can help you consider the whole picture and give ideas about equipment and adapting tasks. Other members of the MS service can offer advice and direction, and there are the various publications from the MS Trust and MS Society. When thinking about how to keep the momentum going over time with regards to using fatigue management principles, it can be helpful to have the understanding and support of those around you, giving gentle reminders about rest and putting the principles of fatigue management into practice. Fatigue management doesn’t lead to fatigue disappearing but it can certainly go a long way in helping you to manage the available energy more effectively and feeling more in control. References 1. Multiple Sclerosis Council. Fatigue and multiple sclerosis: evidence-based management strategies for fatigue in multiple sclerosis. Washington; Paralyzed Veterans of America:1998. 2. StayingSmart - www.stayingsmart.org.uk 3. Ennis M. Living with fatigue. Letchworth Garden City: MS Trust; 2006.
Call: 01462 476 700
11
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:27
Page 12
Secondary fatigue
Fatigue management in MS Jane Currie
Secondary fatigue is not unique to MS. It relates to more general factors that can affect energy levels, eg pain/spasm leading to sleep problems. Here is a brief list of areas that are important when considering fatigue and its possible causes.
Medication What are the side effects of your prescribed medication? Is tiredness one of them and, if so, are there any alternatives? Alison Nock and Vicky Slingsby, MS Specialist Occupational Therapists, Poole MS Service As occupational therapists (OTs) working in an MS service, the topic of fatigue is discussed on an almost daily basis. The statistics suggest that over 85% of people with MS experience fatigue so it is not surprising that this is one of the most talked about symptoms. One of the challenging and frustrating aspects of MS fatigue is the invisible nature that it takes, as this can lead to misunderstanding and misinterpretation with comments like “but you look so well!”
Infection
Cognitive fatigue At times of fatigue, some people describe difficulties concentrating and remembering things. This is often referred to as a form of mental or cognitive fatigue. The MS Trust has a website called StayingSmart that has some useful tips on managing cognitive problems.2
MS fatigue can be difficult to describe. It is defined as: “A subjective lack of physical and/or mental energy that is perceived by the individual or caregiver to interfere with usual or desired activities”1
Environmental factors Are there changes that can be made in your environment, such as rearranging work surfaces or making use of labour saving devices that can make tasks easier to carry out?
Primary fatigue
Anxiety and stress
Primary fatigue is directly related to damage or inflammation affecting the myelin in the central nervous system along with altered immune or endocrine function.
Is stress playing a part in draining energy? This needs to be considered in the whole picture. There are many other factors in life which can affect energy levels and it is helpful to take the time out to identify all the relevant factors before looking at how to manage fatigue.
Short-circuiting fatigue This is where the effort of doing a repetitive task becomes more difficult over time to the point of needing to stop and have an enforced rest. The good news is that it usually improves after a short rest.
So how can fatigue be managed?
Lassitude
www.mstrust.org.uk
Susan Sermoneta
This is an overwhelming sensation of tiredness that sweeps over the body and is often unrelated to the task that you have just been doing.
10
Do you have problems getting to sleep? Is waking in the night a problem or is there too much sleep in the day? It can be really helpful to take a close look at your sleep pattern and factors affecting this.
Is there a pattern of pushing yourself at every opportunity so as not to be ‘giving in to fatigue’ or has the fear of fatigue or difficulties with mobility led to deconditioning? It is about getting a balance here.
The mechanisms underlying MS fatigue are not fully understood. The literature separates the causes into primary and secondary factors.
This is brought on by heat when there is a rise in the body’s core temperature. People have talked about enjoying the sun, lying on a sun-bed, and then not being able to get up! Or for some it might be a hot bath that depletes energy.
Sleep disturbance
Exertion/de-conditioning
Finding a way to communicate the effects MS fatigue can have is useful, in terms of helping significant others understand and thus support the fatigue management process.
Heat sensitive fatigue
Are there any signs of infection? These can affect fatigue levels and need to be either ruled out or treated as soon as possible.
A large part of fatigue management may be regarded as common sense, however there is a difference between knowing something and actually incorporating it into everyday life. For example, we know from research that it is beneficial to have our ‘five a day’ and take regular exercise but putting it into practice doesn’t always happen! So it is important that fatigue management goes beyond the theory and gets put into practice. The MS Trust’s book Living with fatigue gives a good introduction to managing fatigue.3
A good starting point is to complete a fatigue diary over a few days to provide a real picture of what is happening. An OT can help with identifying a suitable way to record this information. The diary can help to identify how/if certain activities affect fatigue, how long recovery takes and what reduces fatigue. The great thing about a diary is that it can be repeated after some changes have been made to see how things are going, as it is all too easy to lose sight of where you started from and the progress you have made. The next stage would be to consider using some energy conservation strategies. The principles of rest and pacing are key aspects of energy conservation. Some people really struggle with the notion of rest as it doesn’t always fit into Western cultural values, which seem to promote busyness and keeping going as long as you can! Comments such as ‘if I rest I feel lazy’ and ‘I feel guilty if I rest as I am not pulling my weight’ often crop up and can get in the way of putting effective fatigue management into practice. Sometimes thinking about what you would advise a friend can help to cast a fresh light on such matters. Getting to know how your fatigue levels relate to specific tasks can be helpful in learning to rest before you get tired, as then there is likely to be less payback time. Sometimes payback is worth it; for example, if it has been an enjoyable, much anticipated event. However, if payback happens regularly as a result of overdoing mundane everyday activities, it might be worth questioning this approach. Prioritisation is about identifying what you want to use your energy for and finding a way to manage this. This can be achieved by using pacing techniques in conjunction with breaking tasks down into manageable chunks. An OT can help you consider the whole picture and give ideas about equipment and adapting tasks. Other members of the MS service can offer advice and direction, and there are the various publications from the MS Trust and MS Society. When thinking about how to keep the momentum going over time with regards to using fatigue management principles, it can be helpful to have the understanding and support of those around you, giving gentle reminders about rest and putting the principles of fatigue management into practice. Fatigue management doesn’t lead to fatigue disappearing but it can certainly go a long way in helping you to manage the available energy more effectively and feeling more in control. References 1. Multiple Sclerosis Council. Fatigue and multiple sclerosis: evidence-based management strategies for fatigue in multiple sclerosis. Washington; Paralyzed Veterans of America:1998. 2. StayingSmart - www.stayingsmart.org.uk 3. Ennis M. Living with fatigue. Letchworth Garden City: MS Trust; 2006.
Call: 01462 476 700
11
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:27
Page 14
can work flexible hours, so I can leave early if I like. I started a routine of always having a coffee and a read of the paper in the afternoon after work as I found this helped my fatigue and helped me to collect my thoughts.
Standing up for MS
Reading about the Gormley project struck a chord with me due to the nature of standing for one hour. At one stage I couldn't stand at all. Now here I was, over two years later, with the ability to still stand, work and live independently. This encouraged me to apply. Emma Taylor
The heavens have just opened on a cold October afternoon, as I stand at the end of a cherry-picker's arm, being lifted onto the Fourth Plinth in Trafalgar Square. I'm about to take part in Anthony Gormley’s One and Other project, where, over the course of 100 days, 2,400 participants occupy the plinth for one hour each. I'm here to represent people with multiple sclerosis, such as myself. You might ask yourself why anybody would opt to stand for an hour in the cold and wet in the middle of London, let alone somebody with a condition that can affect balance. I did it because it was important. I was diagnosed with MS in May 2007. I woke one February morning with numb feet. I thought it was due to having walked home in the snow a few days previously, but when the feeling didn't subside, I consulted my GP. A few weeks later I developed pins and needles in my hands. A similar thing had happened to me ten years before, but I didn't think to connect the two instances until later. Then I started to lose my balance and co-ordination. I remember walking through my office one morning and bumping into something. I had no idea what was going on. The following week I was too ill to go to work. I wasn't sleeping because my legs kept twitching. I tried to write something but couldn't hold the pen. I went to the doctor who advised I rested until I could get an appointment with a neurologist. By the end of the week the doctor advised I get myself checked out at A&E. I was very frightened but I wanted to know what was wrong with me. I spent a week in hospital, received a course of steroids and was sent home with an unconfirmed diagnosis of MS. I thought I was getting better but a couple of weeks later I started to get a visual disturbance in my left eye. This led to my balance and co-ordination getting bad again. I was unable to get out of the bath one morning so my family took me to A&E again. I was admitted to hospital for the
12
second time and this time, after a lumber puncture and MRI scan, it was confirmed that I had relapsing remitting MS. At first I was a little relieved. I finally knew what was causing all this. I knew I couldn't die from it but then the realisation came - I had this for life. There was no cure. I couldn't walk or go to the bathroom properly. I would spend my days in hospital trying to sleep hours away until visiting time. I was very upset I was then assigned an MS nurse, who brought me information and leaflets from the MS Trust that helped me realise that I needed to start fighting this. I found that there were things I could do and medication out there. I started to spend my days doing the exercises that the physiotherapists had left me and eventually started to walk again with the aid of crutches. Beta interferon injections were prescribed and I left hospital after six weeks. When I look back at this now, it feels like I was in hospital longer than that. I've got a lot better. I have had some glitches with my medication and have changed to Copaxone, which is injected every day. This was quite a shock but it does get easier with time. I wouldn't say it's as easy as brushing your teeth but you do get used to it. I went back to work in October 2007, having been off for nearly six months. It was hard to adjust back into it but I was lucky enough to work for a very understanding employer. My hours were reduced at first but I've been back at work full time now for nearly two years. I get very tired sometimes but I
www.mstrust.org.uk
34,520 people applied for 2,400 places. When I heard I had been successful, I couldn't believe it. To be honest, for the first couple of days I almost rejected my place. What was I going to do? Was I able to do this? That's when I remembered being in hospital and the promise I made to myself. In the future, if I was able to do something, I would always give it a go. It's a clichĂŠ but life is short. MS struck me in my prime but I got better, although I live with what feels like an axe above my head. It is important now that I do everything I can to live my life to the full. When I stopped using my crutches, people would comment how healthy I looked, even though I felt awful. Friends and family would say that I was too young to have MS. This inspired me to stand up on the plinth for MS, to alert people to the fact there is no 'typical' appearance. It's a silent disease and no one knows unless you've having a relapse or use a walking aid.
My idea was that MS is like wearing a shackle. You feel chained to the disease. If you're still able to walk, then fatigue means that it can limit what you can get done in a day. I decided to literally chain myself to a pole on the plinth. On the day, the first thing I had to do was go through the healthy and safety measures. The organisers were quite surprised when I produced handcuffs and a chain from my bag! I had a sign that said, 'Help release the shackles of MS', which I thought would get the message across. I also wore a radio mic for the people at home on the internet. As I was being lifted to the plinth, I remember thinking how unique this experience was. I probably wouldn't have applied if I had been healthy. Sometimes it takes a scare to make you appreciate things. When I got on the plinth I forgot about my nerves and I enjoyed the experience. The rain was no concern. I had proved something to myself while raising awareness of an important cause. A gentleman came up to my partner whilst I was on the plinth and asked who I knew with MS. My partner told him that I was the one with MS and he seemed surprised but said how brave I was. My family and friends were very supportive and my mother-in-law called me whilst on the plinth. She has been a source of support for me and visited me everyday when I was in hospital. My family and friends have something to do with how well I am now. I think being in a positive environment can make a big difference. I would like to thank everybody at the MS Trust for their support, not just for the project but for the help and advice from their website. I hope that by being on the plinth I can inspire others to fundraise for MS, to help develop new treatments and hopefully, one day, find a cure.
Watch Emma's hour on the plinth at www.oneandother.co.uk/participants/ Emma_T_1 Sarah Kerton occupied the plinth in September. Watch her hour at www.oneandother.co.uk/participants/ Sardonic
Call: 01462 476 700
13
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:27
Page 14
can work flexible hours, so I can leave early if I like. I started a routine of always having a coffee and a read of the paper in the afternoon after work as I found this helped my fatigue and helped me to collect my thoughts.
Standing up for MS
Reading about the Gormley project struck a chord with me due to the nature of standing for one hour. At one stage I couldn't stand at all. Now here I was, over two years later, with the ability to still stand, work and live independently. This encouraged me to apply. Emma Taylor
The heavens have just opened on a cold October afternoon, as I stand at the end of a cherry-picker's arm, being lifted onto the Fourth Plinth in Trafalgar Square. I'm about to take part in Anthony Gormley’s One and Other project, where, over the course of 100 days, 2,400 participants occupy the plinth for one hour each. I'm here to represent people with multiple sclerosis, such as myself. You might ask yourself why anybody would opt to stand for an hour in the cold and wet in the middle of London, let alone somebody with a condition that can affect balance. I did it because it was important. I was diagnosed with MS in May 2007. I woke one February morning with numb feet. I thought it was due to having walked home in the snow a few days previously, but when the feeling didn't subside, I consulted my GP. A few weeks later I developed pins and needles in my hands. A similar thing had happened to me ten years before, but I didn't think to connect the two instances until later. Then I started to lose my balance and co-ordination. I remember walking through my office one morning and bumping into something. I had no idea what was going on. The following week I was too ill to go to work. I wasn't sleeping because my legs kept twitching. I tried to write something but couldn't hold the pen. I went to the doctor who advised I rested until I could get an appointment with a neurologist. By the end of the week the doctor advised I get myself checked out at A&E. I was very frightened but I wanted to know what was wrong with me. I spent a week in hospital, received a course of steroids and was sent home with an unconfirmed diagnosis of MS. I thought I was getting better but a couple of weeks later I started to get a visual disturbance in my left eye. This led to my balance and co-ordination getting bad again. I was unable to get out of the bath one morning so my family took me to A&E again. I was admitted to hospital for the
12
second time and this time, after a lumber puncture and MRI scan, it was confirmed that I had relapsing remitting MS. At first I was a little relieved. I finally knew what was causing all this. I knew I couldn't die from it but then the realisation came - I had this for life. There was no cure. I couldn't walk or go to the bathroom properly. I would spend my days in hospital trying to sleep hours away until visiting time. I was very upset I was then assigned an MS nurse, who brought me information and leaflets from the MS Trust that helped me realise that I needed to start fighting this. I found that there were things I could do and medication out there. I started to spend my days doing the exercises that the physiotherapists had left me and eventually started to walk again with the aid of crutches. Beta interferon injections were prescribed and I left hospital after six weeks. When I look back at this now, it feels like I was in hospital longer than that. I've got a lot better. I have had some glitches with my medication and have changed to Copaxone, which is injected every day. This was quite a shock but it does get easier with time. I wouldn't say it's as easy as brushing your teeth but you do get used to it. I went back to work in October 2007, having been off for nearly six months. It was hard to adjust back into it but I was lucky enough to work for a very understanding employer. My hours were reduced at first but I've been back at work full time now for nearly two years. I get very tired sometimes but I
www.mstrust.org.uk
34,520 people applied for 2,400 places. When I heard I had been successful, I couldn't believe it. To be honest, for the first couple of days I almost rejected my place. What was I going to do? Was I able to do this? That's when I remembered being in hospital and the promise I made to myself. In the future, if I was able to do something, I would always give it a go. It's a clichĂŠ but life is short. MS struck me in my prime but I got better, although I live with what feels like an axe above my head. It is important now that I do everything I can to live my life to the full. When I stopped using my crutches, people would comment how healthy I looked, even though I felt awful. Friends and family would say that I was too young to have MS. This inspired me to stand up on the plinth for MS, to alert people to the fact there is no 'typical' appearance. It's a silent disease and no one knows unless you've having a relapse or use a walking aid.
My idea was that MS is like wearing a shackle. You feel chained to the disease. If you're still able to walk, then fatigue means that it can limit what you can get done in a day. I decided to literally chain myself to a pole on the plinth. On the day, the first thing I had to do was go through the healthy and safety measures. The organisers were quite surprised when I produced handcuffs and a chain from my bag! I had a sign that said, 'Help release the shackles of MS', which I thought would get the message across. I also wore a radio mic for the people at home on the internet. As I was being lifted to the plinth, I remember thinking how unique this experience was. I probably wouldn't have applied if I had been healthy. Sometimes it takes a scare to make you appreciate things. When I got on the plinth I forgot about my nerves and I enjoyed the experience. The rain was no concern. I had proved something to myself while raising awareness of an important cause. A gentleman came up to my partner whilst I was on the plinth and asked who I knew with MS. My partner told him that I was the one with MS and he seemed surprised but said how brave I was. My family and friends were very supportive and my mother-in-law called me whilst on the plinth. She has been a source of support for me and visited me everyday when I was in hospital. My family and friends have something to do with how well I am now. I think being in a positive environment can make a big difference. I would like to thank everybody at the MS Trust for their support, not just for the project but for the help and advice from their website. I hope that by being on the plinth I can inspire others to fundraise for MS, to help develop new treatments and hopefully, one day, find a cure.
Watch Emma's hour on the plinth at www.oneandother.co.uk/participants/ Emma_T_1 Sarah Kerton occupied the plinth in September. Watch her hour at www.oneandother.co.uk/participants/ Sardonic
Call: 01462 476 700
13
21/1/10
15:27
Page 16
Supporting the MS Trust
Upcoming running events
UK Events
We will be entering our biggest team yet for the Great Manchester Run (10K) on 16 May. Get involved and run for the MS Trust! We will support you every step of the way and we'll be waiting for you after the race at the charity village. Teams of six runners benefit from reduced sponsorship rates! Contact us now to find out more.
Accessible cycle/trike event in the Peak District: 4-6 June 2010 Following requests for a challenge accessible to MS Trust supporters with limited mobility, we are organising a ride along the High Peak and Tissington Trails in Derbyshire’s beautiful Peak District National Park.
it costs the MS Trust £5 per person per year to produce and send out Open Door? We are committed to providing our books, factsheets and newsletters free to anyone who needs them, but this is only possible thanks to the people who support us through donations and fundraising. Please do what you can to support the MS Trust - it is the only way we can keep doing what we do!
Open your garden for MS this June How much do we love our gardens? They give us pleasure, relaxation, healthy exercise, somewhere to entertain and a job for life! As you see the first hopeful signs of new growth, and start planning for how lovely it's going to be this summer, why not also plan to open your garden to support the MS Trust? Or ask your friends and family or your local garden club to help us? Show off your gardening skills, or have a garden party or barbecue.
Overseas Events Costa Rica Trek: 18-28 November 2010 The beauty of Costa Rica is staggering, from dense rainforest to rich flora and fauna; from forest-clad mountains to sparkling blue seas - this trek has it all! Journey through coffee plantations and oak forests, deep into the tropical rainforest where you could be serenaded by howler monkeys and exotic birds. This promises to be the trip of a lifetime, but it will also be a real challenge. Trekking for up to eight hours a day, the route will follow some steep and narrow trails. This remote and untouched area is waiting to be explored! Registration fee: £349 Minimum sponsorship: £2,950 www.mstrust.org.uk/overseas
Icelandic Horse Trek: 22-29 August 2010
Could you do as well as Fiona Mitchinson and Lynda Muldoon (pictured), who with family and friends raised over £600 for the MS Trust at an open garden party?
There's still time to book on this spectacular and challenging ride through Iceland's Snafellsjokull Peninsula, often called 'Iceland in a nutshell' because of its extreme diversity of landscape.
Or Christina Martin, who had “lots of sun and cakes” in her open garden and raised over £500. Christina had great fun and is now starting up a local get-together group with her new found friends.
Registration fee: £230 Minimum sponsorship: £2,450 www.mstrust.org.uk/ride
Join other supporters who are already signing up for our My Garden for MS event between 1 and 14 June 2010. No garden too small or unfinished - all the best gardens are a work in progress! To find out more, please contact us or visit www.mstrust.org.uk/mygarden
14
Looking for insurance? The MS Trust has been working with Unique Insurance Services to develop a range of insurance products that could benefit you and the MS Trust. For a free quote for travel, home, motor insurance or life assurance, visit www.mstrust.org.uk/insurance or call 01603 828387 quoting MST/WEB
www.mstrust.org.uk
A range of cycles will be available over the weekend (wheelchair bikes, trikes and tandems), and accommodation will be in local youth hostels with disabled access bedrooms.
We also have places available in... The 10th Anniversary British 10K London Run: 11 July
These traffic free trails were originally railway lines and are ideal for cyclists to enjoy the scenic views through the limestone countryside of the White Peak area.
Great North Run (half marathon): 19 September www.mstrust.org.uk/runningclub
Registration fee: £40 Minimum sponsorship: £500
Act now and help people with MS for years to come
Still time to book...
The 1st MS Trust Golf Challenge
The MS Trust has teamed up with totallyFREEwills to give our supporters the chance to make a will - for free! Making a will is something that we often put off, but is vital if you want to have control over where your money goes.
The 1st MS Trust Golf Challenge takes place at the Celtic Manor Resort from 20-22 June. Be part of our marathon golfing team and play either 54 or 72 holes on the longest day of the year!
Hadrian's Wall Trek
When making your will, you will be given the opportunity to leave a gift to charity. Your legacy can give us a future and ensure that the next generations affected by MS receive the information and support they need. Please help people with MS by remembering the MS Trust in your will.
Experience our fantastic Hadrian's Wall Trek, from 4-6 June 2010, which will take you on a breathtaking and challenging journey through ancient Roman history. Only £550 minimum sponsorship! www.mstrust.org.uk/ukevents
Every gift makes a big difference and we could not continue our work without your help. Find out how to create your own will, completely free of charge, by visiting www.mstrust.org.uk/wills.
Jump in June 2010 This is your chance to fight your fears and take part in a parachute jump from 10,000ft, all in aid of the MS Trust. A parachute jump is a fantastic challenge to undertake to raise valuable funds. Take to the skies for MS this June!
Natalie Curtin
Did you know...
We would be very grateful if you could display the enclosed poster and help spread the word about this fantastic event. www.mstrust.org.uk/jump
Tony Foulds
T27465 Open Door Dec09 v7.QXD:Layout 1
MS Awareness Week: 26 April - 2 May 2010 Can you help raise awareness of MS during MS Awareness Week? We will be asking our supporters to take part in our £50 Fundraising Challenge, or help raise awareness by displaying information in their local area. If you would like to get involved, please get in touch or visit www.msawarenessweek.org.uk
For more information about our fundraising, please call 01462 476707, email fundraising@mstrust.org.uk or visit www.mstrust.org.uk/fundraising
Call: 01462 476 700
15
21/1/10
15:27
Page 16
Supporting the MS Trust
Upcoming running events
UK Events
We will be entering our biggest team yet for the Great Manchester Run (10K) on 16 May. Get involved and run for the MS Trust! We will support you every step of the way and we'll be waiting for you after the race at the charity village. Teams of six runners benefit from reduced sponsorship rates! Contact us now to find out more.
Accessible cycle/trike event in the Peak District: 4-6 June 2010 Following requests for a challenge accessible to MS Trust supporters with limited mobility, we are organising a ride along the High Peak and Tissington Trails in Derbyshire’s beautiful Peak District National Park.
it costs the MS Trust £5 per person per year to produce and send out Open Door? We are committed to providing our books, factsheets and newsletters free to anyone who needs them, but this is only possible thanks to the people who support us through donations and fundraising. Please do what you can to support the MS Trust - it is the only way we can keep doing what we do!
Open your garden for MS this June How much do we love our gardens? They give us pleasure, relaxation, healthy exercise, somewhere to entertain and a job for life! As you see the first hopeful signs of new growth, and start planning for how lovely it's going to be this summer, why not also plan to open your garden to support the MS Trust? Or ask your friends and family or your local garden club to help us? Show off your gardening skills, or have a garden party or barbecue.
Overseas Events Costa Rica Trek: 18-28 November 2010 The beauty of Costa Rica is staggering, from dense rainforest to rich flora and fauna; from forest-clad mountains to sparkling blue seas - this trek has it all! Journey through coffee plantations and oak forests, deep into the tropical rainforest where you could be serenaded by howler monkeys and exotic birds. This promises to be the trip of a lifetime, but it will also be a real challenge. Trekking for up to eight hours a day, the route will follow some steep and narrow trails. This remote and untouched area is waiting to be explored! Registration fee: £349 Minimum sponsorship: £2,950 www.mstrust.org.uk/overseas
Icelandic Horse Trek: 22-29 August 2010
Could you do as well as Fiona Mitchinson and Lynda Muldoon (pictured), who with family and friends raised over £600 for the MS Trust at an open garden party?
There's still time to book on this spectacular and challenging ride through Iceland's Snafellsjokull Peninsula, often called 'Iceland in a nutshell' because of its extreme diversity of landscape.
Or Christina Martin, who had “lots of sun and cakes” in her open garden and raised over £500. Christina had great fun and is now starting up a local get-together group with her new found friends.
Registration fee: £230 Minimum sponsorship: £2,450 www.mstrust.org.uk/ride
Join other supporters who are already signing up for our My Garden for MS event between 1 and 14 June 2010. No garden too small or unfinished - all the best gardens are a work in progress! To find out more, please contact us or visit www.mstrust.org.uk/mygarden
14
Looking for insurance? The MS Trust has been working with Unique Insurance Services to develop a range of insurance products that could benefit you and the MS Trust. For a free quote for travel, home, motor insurance or life assurance, visit www.mstrust.org.uk/insurance or call 01603 828387 quoting MST/WEB
www.mstrust.org.uk
A range of cycles will be available over the weekend (wheelchair bikes, trikes and tandems), and accommodation will be in local youth hostels with disabled access bedrooms.
We also have places available in... The 10th Anniversary British 10K London Run: 11 July
These traffic free trails were originally railway lines and are ideal for cyclists to enjoy the scenic views through the limestone countryside of the White Peak area.
Great North Run (half marathon): 19 September www.mstrust.org.uk/runningclub
Registration fee: £40 Minimum sponsorship: £500
Act now and help people with MS for years to come
Still time to book...
The 1st MS Trust Golf Challenge
The MS Trust has teamed up with totallyFREEwills to give our supporters the chance to make a will - for free! Making a will is something that we often put off, but is vital if you want to have control over where your money goes.
The 1st MS Trust Golf Challenge takes place at the Celtic Manor Resort from 20-22 June. Be part of our marathon golfing team and play either 54 or 72 holes on the longest day of the year!
Hadrian's Wall Trek
When making your will, you will be given the opportunity to leave a gift to charity. Your legacy can give us a future and ensure that the next generations affected by MS receive the information and support they need. Please help people with MS by remembering the MS Trust in your will.
Experience our fantastic Hadrian's Wall Trek, from 4-6 June 2010, which will take you on a breathtaking and challenging journey through ancient Roman history. Only £550 minimum sponsorship! www.mstrust.org.uk/ukevents
Every gift makes a big difference and we could not continue our work without your help. Find out how to create your own will, completely free of charge, by visiting www.mstrust.org.uk/wills.
Jump in June 2010 This is your chance to fight your fears and take part in a parachute jump from 10,000ft, all in aid of the MS Trust. A parachute jump is a fantastic challenge to undertake to raise valuable funds. Take to the skies for MS this June!
Natalie Curtin
Did you know...
We would be very grateful if you could display the enclosed poster and help spread the word about this fantastic event. www.mstrust.org.uk/jump
Tony Foulds
T27465 Open Door Dec09 v7.QXD:Layout 1
MS Awareness Week: 26 April - 2 May 2010 Can you help raise awareness of MS during MS Awareness Week? We will be asking our supporters to take part in our £50 Fundraising Challenge, or help raise awareness by displaying information in their local area. If you would like to get involved, please get in touch or visit www.msawarenessweek.org.uk
For more information about our fundraising, please call 01462 476707, email fundraising@mstrust.org.uk or visit www.mstrust.org.uk/fundraising
Call: 01462 476 700
15
T27465 Open Door Dec09 v7.QXD:Layout 1
21/1/10
15:26
Page 2
Info Service news Self management
Pick and mix exercises
Self management is something you probably do everyday but don’t realise it. Every day you use problem solving skills, set goals and manage your stress and your time - this is self management.
The continuing popularity of our book Exercises for people with MS demonstrates the desire to find simple but effective strategies for maintaining strength and fitness. To develop this, we have explored ways to present the exercises in a more efficient and tailored manner.
In MS self management includes: I Dealing with symptoms and relapses I Being a partner with health professionals in making informed choices about medicines and treatment I Making best use of available resources I Living well and accommodating MS into your life To help you approach these issues, MS and me, a self management guide to living well with MS, will be published in the spring.
Talking to the kids MS affects not only the person with MS, but the whole family. Discussing MS with children may seem daunting. Each family is unique and each person's experience of MS is different, so there is no right or wrong way to talk about it, just as there is no ideal time. The MS Trust's new book, Talking with your kids about MS, developed with neuropsychologist Jo Johnson, looks at the concerns parents may have, some of the things children may want to know and what other parents' experiences have been. I Talking with your kids about MS will be published in the spring and joins our range of publications for families: I Kids' guide to MS - for 6-10 year olds who have a mum or dad with MS I Young person's guide to MS - for 11-16 year olds who have a parent with MS I Talking about MS - factsheet To order books, contact the MS Trust at the address below or visit www.mstrust.org.uk/publications
The new version is a set of web pages that allow you to compile a personalised programme of exercises to meet your own particular needs. The exercises are arranged in categories based both on how they are done (eg standing exercises, hand and arm exercises) and the type of problems they address (eg exercise to help with posture, with balance or to build up strength). Each exercise includes clear, attractive diagrams, an animation to illustrate the movement and the option to download the individual page. Visit the Exercises web pages at www.mstrust.org.uk/exercises
Any questions? I I I I
I've read about a new drug in the newspaper... What treatments are there for my wife's fatigue? Are my symptoms MS? How can I explain MS to my colleagues?
These are just a few examples of the hundreds of calls, emails and letters received by the MS Trust Information Service each year. Our team will gather together reliable, independent information to match your needs to help you better understand symptoms and have informed conversations with your health professionals about treatment options. Our focus is on health information, but you can ask us anything about MS. If we are unable to find an answer ourselves we will try to direct you to organisations best able to help.
February 2010
Inside this issue...
Welcome to the first edition of Open Door for 2010
The nice things in life
6
Staying smart
8
2010 will be a challenging year, full of uncertainty in the NHS, the economy and the government with an election imminent. Uncertainty is nothing new for people who have MS. Aside from the variability of MS itself, another decade has passed and people are still having to fight for the specialist treatments, services and support they need. This is unacceptable and the MS Trust will continue to campaign for more specialist services and to plug some of the gaps in information, professional education and research; areas which we know are vital to people living with MS. The start of a new year is always a good time to take a look back and it is usually this time of year when we present our Annual Review - a snapshot of our work in the previous year. This year to save both production and postage costs we have decided to make it available from our website and I hope you will be able to take a look - www.mstrust.org.uk/annual_review. Looking forward, we have enclosed our latest publication list showing all the books and resources we will have available this year. Please pass this on to anyone who may find it useful. We are committed to continuing to provide all our books free of charge, but this is only possible thanks to the generosity of many of you who send donations, buy cards and fundraise for our work - a BIG thank you to all of you for all your support.
10
Very best wishes for 2010
To ask your question, ring the Information Service on 01462 476700, email infoteam@mstrust.org.uk or write to us at the address below.
Pam Macfarlane Chief Executive
Fatigue chatroom Fatigue is the most common symptom of MS and one that can have a huge impact on the lives of people with MS. Share your thoughts and questions about fatigue with health professionals and other people with MS in our next chatroom in April. See www.mstrust.org.uk/chatrooms for details. If you are unable to make it to the chatroom on the day, post or email your questions or comments in advance to the address at the bottom of the page. If you would like an email reminder for future sessions, contact info@mstrust.org.uk
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
Also inside:
MS on a pedestal Amongst the 2,400 people who spent an hour on the fourth plinth in Trafalgar Square during 2009, Sarah Kerton and Emma Taylor used their slots to promote awareness of MS. Read more about Emma’s experience and why she did it on page 12
Registered charity no. 1088353
16
Fatigue management
www.mstrust.org.uk
www.mstrust.org.uk
Call: 01462 476 700
Vitamin D and MS
2
News
3
Research news
4
Standing up for MS
12
Supporting the MS Trust
14
Info Service news
16