MS Trust Information Services
Order form For a full list of publications visit www.mstrust.org.uk/publications or order the Publication Leaflet
DVDs Move it for MS – a DVD of exercises for people with MS (£1)
Books Are you sitting comfortably..? a self-help guide to good posture in sitting Living with fatigue MS and me - a self-management guide to living with MS MS explained Talking with your kids about MS Kids’ guide to MS for children aged 6-10 Young person's guide to MS for people aged 10-16
Spasticity chatroom Spasticity, spasms and muscle stiffness are a major source of mobility problems for people with MS. The next MS Trust chatroom will allow people with these symptoms to share thoughts and questions with specialist health professionals and other people with MS. The chatroom will be open on Tuesday 23 November from 10am to 7pm. If you are unable to join the chatroom on the day, post or email your questions or comments in advance to the address at the bottom of this page. More details of the session can be found at www.mstrust.org.uk/chatrooms
MS factsheets Regularly updated, we now have more than 20 titles available Bladder problems Bowel problems Cladribine Fingolimod Functional electrical stimulation (FES) Low does naltrexone (LDN) Natalizumab (Tysabri)
New phone number The MS Trust Information Service now has a freephone number. If you have questions about any aspect of MS, call us on 0800 032 38 39
Chatroom transcripts Fatigue
Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful
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MS Trust news services The news services on the MS Trust's website have been redesigned to bring you the latest information on MS and research. Visit www.mstrust.org.uk/news to find updates on new publications, upcoming events, fundraising opportunities and also MS Trust press releases and comments on stories in the news. Sign up for news alerts and get this information sent to you each Friday.
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The MS Trust Information Service will be open as normal, Monday - Friday 9am to 5pm, with the following exceptions:
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A copy of the MS Trust’s data protection policy is available on request Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET
Inside this issue...
Welcome to Open Door
CCSVI
6
Standing
8
Peristeen
12
The last three months have been both frustrating and disappointing in the world of MS. The MS Society's decision to close their four respite homes caused much controversy and was a blow to those who use them and their families. The homes had a reputation for expertise in the care of those severely affected by MS and it will be a challenge for them to find that 'gold standard' of excellence elsewhere. The availability of residential respite care is important for the wellbeing, not only of the person who has MS, but also for their family and carers. Ultimately the provider is unimportant, so long as the quality is maintained and this essential service is not lost. MS services are being challenged on a number of fronts at present, with access to work assessments, cutbacks to services and threats to specialist nurse posts - the fight for ongoing availability of quality respite care must now be added to the list. The European license for cladribine was also recently turned down on the grounds of risk. Whilst disappointing, it is important to evaluate the risks not solely focus on the benefits of an oral drug. The more we can find out about you; the better we can get at meeting your needs and if we can understand our supporters better, it will help us to engage other people with our work. We have devised a short survey which is enclosed with this copy of Open Door and we would be very grateful if you could spare the time to give us your feedback. The survey can also be completed on our website at www.mstrust.org.uk/survey Many thanks to those of you who support our work by buying our Christmas cards, as well as raising funds for us they also raise awareness of MS. With very best wishes
Also inside: Pam Macfarlane Chief Executive
Tuesday 28 Dec - closed Monday 3 January - closed
Multiple Sclerosis Trust Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353
16
November 2010
www.mstrust.org.uk
Accentuate the positive Everyone has their own ways of coping with MS. In this issue Martin Baum and Alun Jones each describe how they reassessed the effect MS was having on their lives and made positive decisions about how to face life with the condition. Read Martin’s story on page 10 and Alun’s on page 14.
www.mstrust.org.uk
Martin Baum
Call: 0800 032 38 39
MS services audit
2
News
3
Research news
4
Dropping unwanted baggage
10
Never give up never give in
14
MS Trust 16 Information services
What is the MS service like in your area?
Campaigning for improvements to MS services is one of the MS Trust’s objectives.
Previous survey results
The 2006 survey showed that there were some pockets of Early next year the MS Trust, in partnership with the Royal excellence, but in the main services for people with MS College of Physicians, will be undertaking the third survey were poor. Services were not matching the quality or of MS services in England and Wales and we would like quantity recommended by national policies. you to take part. In 2008 over 1,300 people with MS took part and although In 2006 and again in 2008 the survey asked people with access to specialist neurological services had improved, MS, Hospital Trusts, Primary Care Trusts and the Strategic there were still long delays from GP referral to diagnosis, Health Authorities a series of questions based on the with 50% of people waiting over 20 weeks. In addition, the NICE MS management guidelines. The aim is to survey showed that access to neurological rehabilitation understand what services are available and to see how services remained wholly inadequate - only 36% of people they meet the needs of people with MS. with MS had access to such services.
Key recommendations of the NICE MS management guidelines: I Access to specialist neurological and neurorehabilitation services. I A rapid diagnosis (no longer than three months from referral to completion of investigations). I A seamless service across health and social care. I A service which is responsive to people with MS, who should be actively involved in decisions about their care and treatment. I Sensitive and thorough problem and symptom assessment. I Self-referral back into specialist services after discharge.
The survey recognised that the inadequacy of symptom management could cause distress and may worsen disability. If neurological rehabilitation were readily available, the severity of disability would be reduced. One of the big concerns in both the previous audits was the number of people who had experienced skin pressure ulcers, 9% in 2006 and 6% in 2008. As well as being extremely distressing for the person concerned, the estimated total cost of treating preventable skin pressure ulcers in the UK is estimated to be £1-£2 billion, a significant chunk of the NHS budget.
The 2011 survey The structure of the NHS is changing, but there will still be people in place who will commission, provide, monitor and definitely use MS services and it is even more important to get all of their views at this uncertain time. NICE have also announced a review of their guidelines, however the key recommendations as shown above are still very relevant and unlikely to change. Please help us by taking part in the survey - the more data collected, the more significant the results and the more pressure we can apply for services to be improved. If you live in England or Wales and you have been in contact with any NHS service (GP, hospital, therapist etc.) about your MS in 2010 please register to take part in our survey. Register by emailing info@mstrust.org.uk or by telephoning or writing to the MS Trust and letting us know that you are willing to take part. The survey will take place in the first quarter of 2011 and the results published in the summer.
2
www.mstrust.org.uk
News
Licence updates
Equality Act comes into force
In September 2010, the European Medicines Agency (EMA) rejected the licence application for cladribine, a potential oral treatment for MS. The regulators decided that the benefits of the drug did not outweigh the risks, and were concerned about four cases of cancer observed during clinical testing and about the drug’s effect on the immune system. The news came days after the American Food and Drug Administration (FDA) approved fingolimod (Gilenya), another disease modifying drug taken as a tablet, as a treatment for relapsing forms of MS. Fingolimod is still being appraised by the EMA with a decision not expected before 2011.
The majority of the provisions of the new Equality Act came into force on 1 October. The new Act brings together nine separate pieces of antidiscrimination legislation, including the Disability Discrimination Act, and extends protection in a number of ways including:
Order the Cladribine and Fingolimod factsheets from the back page
NICE to review MS guideline NICE (the National Institute for Health and Clinical Excellence) has confirmed that their guideline Management of multiple sclerosis in primary and secondary care is scheduled for review in November 2010. If it is decided that a full update is necessary, this could take over a year to complete.
I Protecting people from discrimination because they associate with someone who has a disability, such as family members or carers I Protection from indirect discrimination, such as an employer making general changes that have a disproportionate effect on employees with a disability The Equality and Human Rights Commission have published a range of guidance leaflets on the new Act - http://tinyurl.com/ehrc-equality-act
Report criticises continence care A national audit of continence care reports that services are failing people. The report, published by the Royal College of Physicians, is particularly critical of services for older people and those living in care homes.
The Guideline was originally launched in 2003 and brought together existing evidence and good practice to define a reasonable level of care for everyone with MS across England. Since publication, significant changes have occurred in the management of MS, including the licensing of new treatments such as Sativex for spasticity and functional electrical stimulation (FES) for dropped foot; the updating of diagnostic criteria for MS; and the publication of a consensus statement on the management of the bladder in MS.
Key findings include:
The disease modifying drugs for MS are covered by other NICE appraisals and are not part of the Guideline.
I Patients are rarely consulted for advice in commissioning services
The MS Trust has worked with the Royal College of Physicians on a series of audits to monitor implementation of the Guideline within the NHS (see facing page).
I Services often fail to meet the standards set out by NICE guidelines
I Diagnosis and treatment of incontinence is often poor or non-existent I Continence services are poorly integrated across NHS services resulting in disjointed care for patients and carers I Often there is no single person responsible for commissioning and improving continence services I Training of healthcare professionals is inadequate
Order the Bladder problems factsheet from the back page
Call: 0800 032 38 39
3
What is the MS service like in your area?
Campaigning for improvements to MS services is one of the MS Trust’s objectives.
Previous survey results
The 2006 survey showed that there were some pockets of Early next year the MS Trust, in partnership with the Royal excellence, but in the main services for people with MS College of Physicians, will be undertaking the third survey were poor. Services were not matching the quality or of MS services in England and Wales and we would like quantity recommended by national policies. you to take part. In 2008 over 1,300 people with MS took part and although In 2006 and again in 2008 the survey asked people with access to specialist neurological services had improved, MS, Hospital Trusts, Primary Care Trusts and the Strategic there were still long delays from GP referral to diagnosis, Health Authorities a series of questions based on the with 50% of people waiting over 20 weeks. In addition, the NICE MS management guidelines. The aim is to survey showed that access to neurological rehabilitation understand what services are available and to see how services remained wholly inadequate - only 36% of people they meet the needs of people with MS. with MS had access to such services.
Key recommendations of the NICE MS management guidelines: I Access to specialist neurological and neurorehabilitation services. I A rapid diagnosis (no longer than three months from referral to completion of investigations). I A seamless service across health and social care. I A service which is responsive to people with MS, who should be actively involved in decisions about their care and treatment. I Sensitive and thorough problem and symptom assessment. I Self-referral back into specialist services after discharge.
The survey recognised that the inadequacy of symptom management could cause distress and may worsen disability. If neurological rehabilitation were readily available, the severity of disability would be reduced. One of the big concerns in both the previous audits was the number of people who had experienced skin pressure ulcers, 9% in 2006 and 6% in 2008. As well as being extremely distressing for the person concerned, the estimated total cost of treating preventable skin pressure ulcers in the UK is estimated to be £1-£2 billion, a significant chunk of the NHS budget.
The 2011 survey The structure of the NHS is changing, but there will still be people in place who will commission, provide, monitor and definitely use MS services and it is even more important to get all of their views at this uncertain time. NICE have also announced a review of their guidelines, however the key recommendations as shown above are still very relevant and unlikely to change. Please help us by taking part in the survey - the more data collected, the more significant the results and the more pressure we can apply for services to be improved. If you live in England or Wales and you have been in contact with any NHS service (GP, hospital, therapist etc.) about your MS in 2010 please register to take part in our survey. Register by emailing info@mstrust.org.uk or by telephoning or writing to the MS Trust and letting us know that you are willing to take part. The survey will take place in the first quarter of 2011 and the results published in the summer.
2
www.mstrust.org.uk
News
Licence updates
Equality Act comes into force
In September 2010, the European Medicines Agency (EMA) rejected the licence application for cladribine, a potential oral treatment for MS. The regulators decided that the benefits of the drug did not outweigh the risks, and were concerned about four cases of cancer observed during clinical testing and about the drug’s effect on the immune system. The news came days after the American Food and Drug Administration (FDA) approved fingolimod (Gilenya), another disease modifying drug taken as a tablet, as a treatment for relapsing forms of MS. Fingolimod is still being appraised by the EMA with a decision not expected before 2011.
The majority of the provisions of the new Equality Act came into force on 1 October. The new Act brings together nine separate pieces of antidiscrimination legislation, including the Disability Discrimination Act, and extends protection in a number of ways including:
Order the Cladribine and Fingolimod factsheets from the back page
NICE to review MS guideline NICE (the National Institute for Health and Clinical Excellence) has confirmed that their guideline Management of multiple sclerosis in primary and secondary care is scheduled for review in November 2010. If it is decided that a full update is necessary, this could take over a year to complete.
I Protecting people from discrimination because they associate with someone who has a disability, such as family members or carers I Protection from indirect discrimination, such as an employer making general changes that have a disproportionate effect on employees with a disability The Equality and Human Rights Commission have published a range of guidance leaflets on the new Act - http://tinyurl.com/ehrc-equality-act
Report criticises continence care A national audit of continence care reports that services are failing people. The report, published by the Royal College of Physicians, is particularly critical of services for older people and those living in care homes.
The Guideline was originally launched in 2003 and brought together existing evidence and good practice to define a reasonable level of care for everyone with MS across England. Since publication, significant changes have occurred in the management of MS, including the licensing of new treatments such as Sativex for spasticity and functional electrical stimulation (FES) for dropped foot; the updating of diagnostic criteria for MS; and the publication of a consensus statement on the management of the bladder in MS.
Key findings include:
The disease modifying drugs for MS are covered by other NICE appraisals and are not part of the Guideline.
I Patients are rarely consulted for advice in commissioning services
The MS Trust has worked with the Royal College of Physicians on a series of audits to monitor implementation of the Guideline within the NHS (see facing page).
I Services often fail to meet the standards set out by NICE guidelines
I Diagnosis and treatment of incontinence is often poor or non-existent I Continence services are poorly integrated across NHS services resulting in disjointed care for patients and carers I Often there is no single person responsible for commissioning and improving continence services I Training of healthcare professionals is inadequate
Order the Bladder problems factsheet from the back page
Call: 0800 032 38 39
3
Functional electrical stimulation for dropped foot
Research news
People with MS more likely to suffer from migraines
Dropped foot is the inability to lift the foot properly when walking. It can be treated using functional electrical stimulation (FES), which uses small electrical charges to help lift the toes as the leg swings.
How do teenagers cope when a parent has MS?
Low dose naltrexone and quality of life
This study comprised interviews with 15 teenagers who described both positive and negative experiences of having a parent with MS. Benefits included having greater empathy for others and becoming more independent. Negative aspects included family tension, less time to spend with friends and worries about the future.
Some people have reported that low dose naltrexone (LDN), a drug used at higher doses to treat addiction, can alleviate the symptoms of MS. However, there have been few clinical studies of LDN in MS.
The severity and progression of the parent’s symptoms, support from the other partner, siblings or friends, and extra responsibilities towards their parents all played a role in adjustment. The study highlighted the importance of the family environment and the researchers suggested that supporting families to improve communications may benefit adolescents who are finding it hard to cope. Bogosian A, et al. How do adolescents adjust to their parent’s multiple sclerosis?: An interview study. British Journal of Health Psychology 2010 Aug 4 [Epub ahead of print].
Order The young person’s guide to MS and Talking with your kids about MS from the back page
People over 60 can have relapses too It is generally believed that older people diagnosed with MS are more likely to follow a progressive course. Data reported by a US clinic has challenged this. Neurologists reviewed records of 111 people diagnosed with MS or clinically isolated syndrome (first symptoms indicative of MS) at age 60 or over. Active inflammation (as shown by clinical relapses and gadolinium enhancement on MRI scans) occurred in a significant number. These observations show that people over 60 can have active relapses, develop new lesions and show signs of active inflammation just like people in their 20s. These findings have implications for evaluation and treatment of people with MS diagnosed at an older age. Bermel RA, et al. Diagnosing multiple sclerosis at a later age: more than just progressive myelopathy. Multiple Sclerosis 2010:Jul 29 [Epub ahead of print].
4
Two recent studies have investigated the impact of LDN on quality of life. In both studies, participants (60 in one study, 96 in the other) took LDN or placebo for eight weeks, had a one week break, and then switched to the other treatment for a further eight weeks; neither investigators nor participants knew which treatment they were taking. Participants completed questionnaires covering general quality of life. In one study there was an improvement in mental health quality of life after taking LDN, but in the second no statistically significant changes in any aspect of quality of life were observed. Both studies found that LDN was well tolerated and concluded that a longer duration trial was needed. Cree BA, et al. Pilot trial of low-dose naltrexone and quality of life in multiple sclerosis. Annals of Neurology 2010;68(2):145-150.
In this MS Trust funded study of 53 people with secondary progressive MS, FES was compared with physiotherapy exercises over an 18 week period. The FES group had fewer falls and was more successful at achieving personal predefined goals, such as being able to climb the stairs or walk for a longer distance. This research provides further evidence to support the use of FES in people with dropped foot. Esnouf J, et al. Impact on activities of daily living using a functional electrical stimulation device to improve dropped foot in people with multiple sclerosis, measured by the Canadian Occupational Performance Measure. Multiple Sclerosis 2010;16(9):1141-1147.
Order the FES factsheet from the back page
Postural balance in MS MS can affect balance in a number of ways leading to increased risk of falls. A recent study of 67 women with MS found that their balance was significantly reduced even though they had no problems walking. An MS Trust funded pilot study found improvements in balance and mobility in people with MS following eight weeks of individualised core stability training. Core stability training targets the muscles in the trunk of the body which assist in the maintenance of good posture and provide the foundation for all arm and leg movements.
Sharafaddinzadeh N, et al. The effect of low-dose naltrexone on quality of life of patients with multiple sclerosis: a randomized placebo-controlled trial. Multiple Sclerosis 2010;16(8):964-970.
Fjeldstad C, et al. Decreased postural balance in multiple sclerosis patients with low disability. International Journal of Rehabilitation Research 2010 Jul 31 [Epub ahead of print].
Order the LDN factsheet from the back page
Freeman JA, et al. The effect of core stability training on balance and mobility in ambulant individuals with multiple sclerosis: a multi-centre series of single case studies. Multiple Sclerosis 2010 August 10 [Epub ahead of print].
Epilepsy associated with MS Epileptic seizures can occur in some people with MS. Using evoked potentials, tests which measure the speed of nerve responses, researchers found an association between the existence of epilepsy in MS and evoked potentials which indicate damage to the brainstem, an area at the base of the brain that connects to the spinal cord. They conclude that epileptic seizures occurring as a symptom of MS may be the result of lesions in this area of the brain. Papathanasiou ES, et al. Brainstem lesions may be important in the development of epilepsy in multiple sclerosis patients: An evoked potential study. Clinical Neurophysiology 2010 Jun 11 [Epub ahead of print].
www.mstrust.org.uk
Order the Falls book from the back page
picture: Craig Munro
Data from 204 people with MS revealed that they were three times more likely to experience migraine than the general population. The symptoms that were more commonly seen in people with MS who experienced migraine included facial pain of different types, muscle pain, nonheadache pain and a past history of depression. The frequency of migraine did not appear to be associated with level of disability or disease activity as seen on MRI. Kister I, et al. Migraine is comorbid with multiple sclerosis and associated with a more symptomatic MS course. Journal of Headache and Pain 2010;11(5):417-425.
Natalizumab drug holiday poorly tolerated Natalizumab (Tysabri) is a disease modifying drug licensed for use in people with highly active relapsing remitting multiple sclerosis. Progressive multifocal leukoencephalopathy (PML) is a rare but very serious side effect. Although still low, the risk of developing PML increases after two years of treatment. It has been suggested that having a break from treatment might reduce the risk. However, two recent reports in the Annals of Neurology found that discontinuing natalizumab treatment can result in relapses and new disease activity on MRI scans. These findings suggest that in people with highly active MS, a natalizumab drug holiday without reinstating alternative disease modifying therapy is poorly tolerated. Killestein J, et al. Natalizumab drug holiday in multiple sclerosis: poorly tolerated. Annals of Neurology 2010;68(3):392-395. West TW, et al. Natalizumab dosage suspension: Are we helping or hurting? Annals of Neurology 2010;68(3):395-399.
Order the Natalizumab (Tysabri) factsheet from the back page
Call: 0800 032 38 39
5
Functional electrical stimulation for dropped foot
Research news
People with MS more likely to suffer from migraines
Dropped foot is the inability to lift the foot properly when walking. It can be treated using functional electrical stimulation (FES), which uses small electrical charges to help lift the toes as the leg swings.
How do teenagers cope when a parent has MS?
Low dose naltrexone and quality of life
This study comprised interviews with 15 teenagers who described both positive and negative experiences of having a parent with MS. Benefits included having greater empathy for others and becoming more independent. Negative aspects included family tension, less time to spend with friends and worries about the future.
Some people have reported that low dose naltrexone (LDN), a drug used at higher doses to treat addiction, can alleviate the symptoms of MS. However, there have been few clinical studies of LDN in MS.
The severity and progression of the parent’s symptoms, support from the other partner, siblings or friends, and extra responsibilities towards their parents all played a role in adjustment. The study highlighted the importance of the family environment and the researchers suggested that supporting families to improve communications may benefit adolescents who are finding it hard to cope. Bogosian A, et al. How do adolescents adjust to their parent’s multiple sclerosis?: An interview study. British Journal of Health Psychology 2010 Aug 4 [Epub ahead of print].
Order The young person’s guide to MS and Talking with your kids about MS from the back page
People over 60 can have relapses too It is generally believed that older people diagnosed with MS are more likely to follow a progressive course. Data reported by a US clinic has challenged this. Neurologists reviewed records of 111 people diagnosed with MS or clinically isolated syndrome (first symptoms indicative of MS) at age 60 or over. Active inflammation (as shown by clinical relapses and gadolinium enhancement on MRI scans) occurred in a significant number. These observations show that people over 60 can have active relapses, develop new lesions and show signs of active inflammation just like people in their 20s. These findings have implications for evaluation and treatment of people with MS diagnosed at an older age. Bermel RA, et al. Diagnosing multiple sclerosis at a later age: more than just progressive myelopathy. Multiple Sclerosis 2010:Jul 29 [Epub ahead of print].
4
Two recent studies have investigated the impact of LDN on quality of life. In both studies, participants (60 in one study, 96 in the other) took LDN or placebo for eight weeks, had a one week break, and then switched to the other treatment for a further eight weeks; neither investigators nor participants knew which treatment they were taking. Participants completed questionnaires covering general quality of life. In one study there was an improvement in mental health quality of life after taking LDN, but in the second no statistically significant changes in any aspect of quality of life were observed. Both studies found that LDN was well tolerated and concluded that a longer duration trial was needed. Cree BA, et al. Pilot trial of low-dose naltrexone and quality of life in multiple sclerosis. Annals of Neurology 2010;68(2):145-150.
In this MS Trust funded study of 53 people with secondary progressive MS, FES was compared with physiotherapy exercises over an 18 week period. The FES group had fewer falls and was more successful at achieving personal predefined goals, such as being able to climb the stairs or walk for a longer distance. This research provides further evidence to support the use of FES in people with dropped foot. Esnouf J, et al. Impact on activities of daily living using a functional electrical stimulation device to improve dropped foot in people with multiple sclerosis, measured by the Canadian Occupational Performance Measure. Multiple Sclerosis 2010;16(9):1141-1147.
Order the FES factsheet from the back page
Postural balance in MS MS can affect balance in a number of ways leading to increased risk of falls. A recent study of 67 women with MS found that their balance was significantly reduced even though they had no problems walking. An MS Trust funded pilot study found improvements in balance and mobility in people with MS following eight weeks of individualised core stability training. Core stability training targets the muscles in the trunk of the body which assist in the maintenance of good posture and provide the foundation for all arm and leg movements.
Sharafaddinzadeh N, et al. The effect of low-dose naltrexone on quality of life of patients with multiple sclerosis: a randomized placebo-controlled trial. Multiple Sclerosis 2010;16(8):964-970.
Fjeldstad C, et al. Decreased postural balance in multiple sclerosis patients with low disability. International Journal of Rehabilitation Research 2010 Jul 31 [Epub ahead of print].
Order the LDN factsheet from the back page
Freeman JA, et al. The effect of core stability training on balance and mobility in ambulant individuals with multiple sclerosis: a multi-centre series of single case studies. Multiple Sclerosis 2010 August 10 [Epub ahead of print].
Epilepsy associated with MS Epileptic seizures can occur in some people with MS. Using evoked potentials, tests which measure the speed of nerve responses, researchers found an association between the existence of epilepsy in MS and evoked potentials which indicate damage to the brainstem, an area at the base of the brain that connects to the spinal cord. They conclude that epileptic seizures occurring as a symptom of MS may be the result of lesions in this area of the brain. Papathanasiou ES, et al. Brainstem lesions may be important in the development of epilepsy in multiple sclerosis patients: An evoked potential study. Clinical Neurophysiology 2010 Jun 11 [Epub ahead of print].
www.mstrust.org.uk
Order the Falls book from the back page
picture: Craig Munro
Data from 204 people with MS revealed that they were three times more likely to experience migraine than the general population. The symptoms that were more commonly seen in people with MS who experienced migraine included facial pain of different types, muscle pain, nonheadache pain and a past history of depression. The frequency of migraine did not appear to be associated with level of disability or disease activity as seen on MRI. Kister I, et al. Migraine is comorbid with multiple sclerosis and associated with a more symptomatic MS course. Journal of Headache and Pain 2010;11(5):417-425.
Natalizumab drug holiday poorly tolerated Natalizumab (Tysabri) is a disease modifying drug licensed for use in people with highly active relapsing remitting multiple sclerosis. Progressive multifocal leukoencephalopathy (PML) is a rare but very serious side effect. Although still low, the risk of developing PML increases after two years of treatment. It has been suggested that having a break from treatment might reduce the risk. However, two recent reports in the Annals of Neurology found that discontinuing natalizumab treatment can result in relapses and new disease activity on MRI scans. These findings suggest that in people with highly active MS, a natalizumab drug holiday without reinstating alternative disease modifying therapy is poorly tolerated. Killestein J, et al. Natalizumab drug holiday in multiple sclerosis: poorly tolerated. Annals of Neurology 2010;68(3):392-395. West TW, et al. Natalizumab dosage suspension: Are we helping or hurting? Annals of Neurology 2010;68(3):395-399.
Order the Natalizumab (Tysabri) factsheet from the back page
Call: 0800 032 38 39
5
The interim results of a larger study conducted by the University of Buffalo were published in February 2010.6 Of 280 people with MS, 56.4% showed an abnormality in the venous flow within one or both internal jugular veins when examined using Doppler ultrasound. This compared to 22.4% of a healthy control group.
CCSVI theory: an update
Dr Lucy Matthews, MRC Clinical Research Training Fellow, Dr Jacqueline Palace, Consultant Neurologist, John Radcliffe Hospital, Oxford
We previously covered CCSVI in the February 2010 issue of Open Door. In light of continuing interest, we approached Drs Matthews and Palace for their views on this topic. Multiple sclerosis causes inflammation and damage to myelin, the insulating layer that coats the nerve cells in the brain and spinal cord. The fundamental cause of this is currently unknown, although many theories have been proposed, and it is likely to be a combination of genetic and environmental factors. In 2009, Professor Paolo Zamboni, a vascular surgeon, published research suggesting an association between abnormalities (including narrowing) of the veins draining the brain and spinal cord, and MS.1,2 This led to a theory that chronic cerebrospinal venous insufficiency (CCSVI) could be a cause of MS, sparking much media interest and controversy over whether there is sufficient evidence to support surgery. Recent independent research has challenged the findings of Zamboni.3,4
Of the 65 people with MS investigated, he reported that 37% had evidence of narrowing of the internal jugular vein and 71% had reflux (ie blood flowing in the wrong direction) in either the internal jugular vein or the spinal veins. In the control group of 190 healthy people and 45 people with other neurological conditions, no significant abnormalities were found. Using venography, where dye is injected directly into the vein, Zamboni found a narrowing in either one or both of the internal jugular veins in 91% of the people with MS.
Alternative theories of iron deposition in multiple sclerosis Inflammation theory
CCSVI theory
Inflammation in the brain and spinal cord
Resistance in the veins draining the brain and spinal cord
What is the evidence? It has been well described in post-mortem and MRI studies that MS lesions are often centred around a small vein and it is thought that the inflammatory cells that are found in the lesions enter the brain from the blood. It is also documented that MS lesions contain iron deposits. Traditionally this has been thought to be due to the inflammation causing iron to leak from blood vessels. Prof Zamboni has proposed that alternatively the iron deposition could be caused by back-pressure in the venous system due to restricted outflow through the large draining veins. He theorises that this iron attracts the inflammation and subsequent loss of myelin seen in MS.5 These two contrasting theories are summarised in the diagram.
Damage to the small blood vessels in the brain and the spinal cord
Leakage of iron from the blood cells into the brain and spinal cord tissues
Prof Zamboni undertook Doppler ultrasound studies to measure the direction and speed of flow through the internal jugular veins that drain blood from the brain and the azygos veins in the spinal cord.1,2
6
www.mstrust.org.uk
Backpressure/ congestion in the venous system
Deposition of iron from the red blood cells
Inflammation and subsequent demyelination caused by the iron deposits
Recently German researchers undertook an extended Doppler study of the internal jugular veins and the vertebral veins, examining 56 people with MS (41 with a relapsing remitting course and 15 with secondary progressive MS) and 20 controls.3 None of the people with MS or healthy controls fulfilled the diagnostic criteria proposed by Prof Zamboni for CCSVI, and in none of the subjects was narrowing of the internal jugular vein detected. Another recent German Doppler ultrasound study reported that only 20% of 65 patients with MS fulfilled the diagnostic criteria for CCSVI.4
Our comments Although the early findings may suggest an association between MS and abnormalities of the venous system, it is important to test this theory further in independent studies. The first of these independent studies have not reproduced Zamboni’s results. Furthermore, if a valid link is found, it will need to be established whether the narrowing is a cause of MS, or alternatively due to the effect of MS. It should be noted when interpreting the findings of these studies that it is very difficult to blind the investigators carrying out the ultrasounds to whether the subject has MS or not, and this could influence and bias the results. Certain conditions can obstruct the draining veins of the brain (eg a clot or a tumour). The symptoms caused by this obstruction include headache (a specific type related to raised pressure), raised pressure in the spinal fluid and haemorrhage associated strokes. These symptoms are not seen in MS, and conversely conditions that obstruct the draining veins in the brain do not to our knowledge produce symptoms typical of MS. The MS science community has however realised the importance of pursuing this novel theory, and trying to establish its relevance to people living with MS.
Is investigation and treatment currently being offered? There currently isn’t sufficient evidence to support CCSVI as the cause of MS. Several centres around the world, however, are already offering Doppler ultrasound examinations and the option to undergo surgery. This operation involves feeding a catheter from a vein in the groin, through the heart, to the veins in the neck. Here, either a balloon would be
inflated to dilate the vein or a stent (wire mesh tube) would be placed. Complications of this procedure have been reported, and it was announced in February 2010 that this procedure was stopped in Stanford University due to two serious complications including one death. The long-term outcome for people with MS who have undergone this procedure is as yet unknown. Prof Zamboni published the results of this surgery at an average follow up of 18 months in his group of 65 people with MS.7 In people with relapsing remitting MS, the proportion who were relapse free at one year was reported to increase from 27% to 50% post treatment, and there was also some improvement in a functional score (MSFC). There was no improvement in those with secondary and primary progressive MS. The people who underwent the treatment were not compared to a group who did not, and therefore it is very hard to assess the significance of the results. People with MS who have had recent relapses are often recruited to clinical trials, and will usually spontaneously improve with or without intervention. In addition, there was a high rate of the abnormality recurring post surgery (47% of participants).
What is the next step? CCSVI is an interesting theory, but has been challenged by independent research. The surgical procedure currently on offer in some private clinics is not without risk, and at present not funded by the NHS because it is not clear that it has any positive effect on MS. It is important to await the results of further independent research studies that test the association of venous insufficiency with MS; and if a true relationship is found to investigate whether it is the cause or the effect of the disease process. The true benefits of invasive intervention would then need testing in regulated controlled trials. References 1. Zamboni P, et al. The value of cerebral venous haemodynamics in the assessment of multiple sclerosis. Journal of Neurological Sciences 2009;282:21-27. 2. Zamboni P, et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. Journal of Neurology, Neurosurgery & Psychiatry 2009;80(4):392-399. 3. Doepp F, et al. No cerebrocervical venous congestion in patients with multiple sclerosis. Annals of Neurology 2010;68:173-183. 4. Krogias C, et al. Chronic cerebrospinal venous insufficiency and multiple sclerosis: critical analysis and first observation in an unselected cohort of MS patients. Nervenarzt 2010;81(6):740-746. 5. Singh AV, Zamboni P. Anomalous venous blood flow and iron deposition in multiple sclerosis. Journal of Cerebral Blood Flow and Metabolism 2009;29:1867-1878. 6. First blinded study of venous insufficiency prevalence in MS shows promising results. University of Buffalo press release - 10 February 2010. 7. Zamboni P, et al. A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency. Journal of Vascular Surgery 2009;50:1348-1358.
Call: 0800 032 38 39
7
The interim results of a larger study conducted by the University of Buffalo were published in February 2010.6 Of 280 people with MS, 56.4% showed an abnormality in the venous flow within one or both internal jugular veins when examined using Doppler ultrasound. This compared to 22.4% of a healthy control group.
CCSVI theory: an update
Dr Lucy Matthews, MRC Clinical Research Training Fellow, Dr Jacqueline Palace, Consultant Neurologist, John Radcliffe Hospital, Oxford
We previously covered CCSVI in the February 2010 issue of Open Door. In light of continuing interest, we approached Drs Matthews and Palace for their views on this topic. Multiple sclerosis causes inflammation and damage to myelin, the insulating layer that coats the nerve cells in the brain and spinal cord. The fundamental cause of this is currently unknown, although many theories have been proposed, and it is likely to be a combination of genetic and environmental factors. In 2009, Professor Paolo Zamboni, a vascular surgeon, published research suggesting an association between abnormalities (including narrowing) of the veins draining the brain and spinal cord, and MS.1,2 This led to a theory that chronic cerebrospinal venous insufficiency (CCSVI) could be a cause of MS, sparking much media interest and controversy over whether there is sufficient evidence to support surgery. Recent independent research has challenged the findings of Zamboni.3,4
Of the 65 people with MS investigated, he reported that 37% had evidence of narrowing of the internal jugular vein and 71% had reflux (ie blood flowing in the wrong direction) in either the internal jugular vein or the spinal veins. In the control group of 190 healthy people and 45 people with other neurological conditions, no significant abnormalities were found. Using venography, where dye is injected directly into the vein, Zamboni found a narrowing in either one or both of the internal jugular veins in 91% of the people with MS.
Alternative theories of iron deposition in multiple sclerosis Inflammation theory
CCSVI theory
Inflammation in the brain and spinal cord
Resistance in the veins draining the brain and spinal cord
What is the evidence? It has been well described in post-mortem and MRI studies that MS lesions are often centred around a small vein and it is thought that the inflammatory cells that are found in the lesions enter the brain from the blood. It is also documented that MS lesions contain iron deposits. Traditionally this has been thought to be due to the inflammation causing iron to leak from blood vessels. Prof Zamboni has proposed that alternatively the iron deposition could be caused by back-pressure in the venous system due to restricted outflow through the large draining veins. He theorises that this iron attracts the inflammation and subsequent loss of myelin seen in MS.5 These two contrasting theories are summarised in the diagram.
Damage to the small blood vessels in the brain and the spinal cord
Leakage of iron from the blood cells into the brain and spinal cord tissues
Prof Zamboni undertook Doppler ultrasound studies to measure the direction and speed of flow through the internal jugular veins that drain blood from the brain and the azygos veins in the spinal cord.1,2
6
www.mstrust.org.uk
Backpressure/ congestion in the venous system
Deposition of iron from the red blood cells
Inflammation and subsequent demyelination caused by the iron deposits
Recently German researchers undertook an extended Doppler study of the internal jugular veins and the vertebral veins, examining 56 people with MS (41 with a relapsing remitting course and 15 with secondary progressive MS) and 20 controls.3 None of the people with MS or healthy controls fulfilled the diagnostic criteria proposed by Prof Zamboni for CCSVI, and in none of the subjects was narrowing of the internal jugular vein detected. Another recent German Doppler ultrasound study reported that only 20% of 65 patients with MS fulfilled the diagnostic criteria for CCSVI.4
Our comments Although the early findings may suggest an association between MS and abnormalities of the venous system, it is important to test this theory further in independent studies. The first of these independent studies have not reproduced Zamboni’s results. Furthermore, if a valid link is found, it will need to be established whether the narrowing is a cause of MS, or alternatively due to the effect of MS. It should be noted when interpreting the findings of these studies that it is very difficult to blind the investigators carrying out the ultrasounds to whether the subject has MS or not, and this could influence and bias the results. Certain conditions can obstruct the draining veins of the brain (eg a clot or a tumour). The symptoms caused by this obstruction include headache (a specific type related to raised pressure), raised pressure in the spinal fluid and haemorrhage associated strokes. These symptoms are not seen in MS, and conversely conditions that obstruct the draining veins in the brain do not to our knowledge produce symptoms typical of MS. The MS science community has however realised the importance of pursuing this novel theory, and trying to establish its relevance to people living with MS.
Is investigation and treatment currently being offered? There currently isn’t sufficient evidence to support CCSVI as the cause of MS. Several centres around the world, however, are already offering Doppler ultrasound examinations and the option to undergo surgery. This operation involves feeding a catheter from a vein in the groin, through the heart, to the veins in the neck. Here, either a balloon would be
inflated to dilate the vein or a stent (wire mesh tube) would be placed. Complications of this procedure have been reported, and it was announced in February 2010 that this procedure was stopped in Stanford University due to two serious complications including one death. The long-term outcome for people with MS who have undergone this procedure is as yet unknown. Prof Zamboni published the results of this surgery at an average follow up of 18 months in his group of 65 people with MS.7 In people with relapsing remitting MS, the proportion who were relapse free at one year was reported to increase from 27% to 50% post treatment, and there was also some improvement in a functional score (MSFC). There was no improvement in those with secondary and primary progressive MS. The people who underwent the treatment were not compared to a group who did not, and therefore it is very hard to assess the significance of the results. People with MS who have had recent relapses are often recruited to clinical trials, and will usually spontaneously improve with or without intervention. In addition, there was a high rate of the abnormality recurring post surgery (47% of participants).
What is the next step? CCSVI is an interesting theory, but has been challenged by independent research. The surgical procedure currently on offer in some private clinics is not without risk, and at present not funded by the NHS because it is not clear that it has any positive effect on MS. It is important to await the results of further independent research studies that test the association of venous insufficiency with MS; and if a true relationship is found to investigate whether it is the cause or the effect of the disease process. The true benefits of invasive intervention would then need testing in regulated controlled trials. References 1. Zamboni P, et al. The value of cerebral venous haemodynamics in the assessment of multiple sclerosis. Journal of Neurological Sciences 2009;282:21-27. 2. Zamboni P, et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. Journal of Neurology, Neurosurgery & Psychiatry 2009;80(4):392-399. 3. Doepp F, et al. No cerebrocervical venous congestion in patients with multiple sclerosis. Annals of Neurology 2010;68:173-183. 4. Krogias C, et al. Chronic cerebrospinal venous insufficiency and multiple sclerosis: critical analysis and first observation in an unselected cohort of MS patients. Nervenarzt 2010;81(6):740-746. 5. Singh AV, Zamboni P. Anomalous venous blood flow and iron deposition in multiple sclerosis. Journal of Cerebral Blood Flow and Metabolism 2009;29:1867-1878. 6. First blinded study of venous insufficiency prevalence in MS shows promising results. University of Buffalo press release - 10 February 2010. 7. Zamboni P, et al. A prospective open-label study of endovascular treatment of chronic cerebrospinal venous insufficiency. Journal of Vascular Surgery 2009;50:1348-1358.
Call: 0800 032 38 39
7
What are the potential benefits of standing?
Standing in the management of MS
There has been very little research on the effects of regular standing in standing frames using only people with MS. Only one study has looked at this to date, which found that standing regularly for three weeks improved hip and ankle stiffness and may decrease spasms.1 More work has been done involving people with spinal cord injury, however, with reports of improvements in upper body strength, bowel and bladder function, spasms, joint stiffness and feelings of well-being.
Wendy Hendrie, Postgraduate Research Physiotherapist From the time when our ancestors first adopted an upright posture, standing has become an integral part of what it is to be human. Standing upright allows us not only to carry out a multitude of important activities but also enables us to interact in the world ‘eye to eye’ with other people. Old, clichéd metaphors such as ‘standing on your own two feet’ imply strength of character and independence, qualities we admire in others and wish for ourselves. Standing may also contribute to our feelings of self-esteem and identity, for example, many people stand and check how they look each day in the mirror. As well as contributing to feelings of well-being, regular standing may also prevent or reverse some of the complications which can arise because of prolonged sitting which, if left unchecked can lead to greater levels of disability. Regular standing in a standing frame at home may be a simple and enjoyable way for people with MS who are having difficulty standing or walking to maintain their independence for as long as possible.
into a standing position. More basic frames, such as the wooden Oswestry frame used in this research, require the person to be able to pull themselves into a standing position with minimal assistance. Standing frames have been used since the 1970s, mainly by people with spinal cord injuries and children with cerebral palsy, to help people with weak or paralysed leg muscles to stand in a safe and supported environment. This position enables them to fully stretch their legs, exercise their upper body to keep it strong and relieve pressure.
“Standing up is a little thing that’s actually a big thing” The quote above is from an interview with a person who is currently participating in a research project. The study is looking at the impact of regular standing in standing frames in people with MS who cannot walk more than a few steps and spend most of their day sitting down. This article looks at why standing is potentially an important activity for people at this stage of their MS and reports on this research project.
What is a standing frame? A standing frame is a specially constructed piece of equipment that enables someone who cannot stand independently to stand in a safe, fully upright position. Once in the frame, the person’s lower body is held firmly by straps at the ankles, knees and hips allowing the upper body to move freely in space. Different types of frame are available. Some are picture: XhyraGraf electrically operated and these can raise the person
8
www.mstrust.org.uk
How could standing help people with MS? For some people with MS, the ability to stand and balance independently can become more difficult as their legs become weaker. Although standing may still be possible, poor balance often means that arms have to be used for support instead of for other activities. Once this stage has been reached, standing may only happen for brief periods, to transfer or take a few steps, and most of the day is spent sitting in an easy chair or wheelchair. Sitting for long periods of time can cause other problems to develop which can further increase disability and reduce independence. These include weakening of the trunk and upper body muscles because they are not getting the opportunity to move freely in space. This weakness can lead to increased disability and make transfers and balance even worse and activities of daily living more difficult to perform. Other complications can also occur when people sit for long periods. These include painful joints, constipation, increased spasms, pressure ulcers and tightness in the muscles. These problems of prolonged sitting often come on slowly and may be mistaken for worsening of the MS, but many may be preventable or reversible if the body is given the opportunity to change position and exercise on a regular basis. Regular standing in a standing frame may help to prevent or relieve some of these problems as the upper body is free to exercise, the leg and trunk muscles are stretched and an upright position may help relieve constipation and spasms. This research project is currently testing out these theories in nine people with MS.
users or able only to walk short distances with a frame. Measurements of their movements and balance were taken fortnightly for a number of months as a baseline. Standing frames were then delivered to their homes and they were asked to try to stand for at least 30 minutes three times a week for between 16 and 24 weeks. Measurements were repeated during the standing phase. The study is being carried in their homes as this would be the ideal place for people with MS to self-manage their own standing programme. The study is looking at not only the physical effects of standing but the psychological effects. Participants have been interviewed to explore their experience of standing upright as standing may help people who spend most of their time sitting to feel better in themselves. MS is a difficult disease to cope with psychologically so an increased feeling of well-being is an important effect and needs investigating. The physical measures collected before and after standing are: 1. Ability to perform activities of daily living 2. Ability to perform limb movements and activities such as rolling over and balancing 3. Spasm frequency 4. Bowel frequency 5. Pain levels
Results of the study The results are being analysed at the moment and will be reported at a later date. If they show that people with MS benefit from regular standing in a frame, ideally, people with MS would be encouraged by physiotherapists to use these frames at home as soon as their ability to stand began to deteriorate. Reference 1. Baker K, et al. Therapeutic standing for people with multiple sclerosis: efficacy and feasibility. International Journal of Therapy and Rehabilitation 2007;14(3):104-109.
Wendy Hendrie is also the co-author of the MS Trust book Are you sitting comfortably..? a self-help guide to good posture in sitting.
The study The study is based at the University of East Anglia. Nine volunteers, three men and six women, are taking part and all are either full-time wheelchair
Call: 0800 032 38 39
9
What are the potential benefits of standing?
Standing in the management of MS
There has been very little research on the effects of regular standing in standing frames using only people with MS. Only one study has looked at this to date, which found that standing regularly for three weeks improved hip and ankle stiffness and may decrease spasms.1 More work has been done involving people with spinal cord injury, however, with reports of improvements in upper body strength, bowel and bladder function, spasms, joint stiffness and feelings of well-being.
Wendy Hendrie, Postgraduate Research Physiotherapist From the time when our ancestors first adopted an upright posture, standing has become an integral part of what it is to be human. Standing upright allows us not only to carry out a multitude of important activities but also enables us to interact in the world ‘eye to eye’ with other people. Old, clichéd metaphors such as ‘standing on your own two feet’ imply strength of character and independence, qualities we admire in others and wish for ourselves. Standing may also contribute to our feelings of self-esteem and identity, for example, many people stand and check how they look each day in the mirror. As well as contributing to feelings of well-being, regular standing may also prevent or reverse some of the complications which can arise because of prolonged sitting which, if left unchecked can lead to greater levels of disability. Regular standing in a standing frame at home may be a simple and enjoyable way for people with MS who are having difficulty standing or walking to maintain their independence for as long as possible.
into a standing position. More basic frames, such as the wooden Oswestry frame used in this research, require the person to be able to pull themselves into a standing position with minimal assistance. Standing frames have been used since the 1970s, mainly by people with spinal cord injuries and children with cerebral palsy, to help people with weak or paralysed leg muscles to stand in a safe and supported environment. This position enables them to fully stretch their legs, exercise their upper body to keep it strong and relieve pressure.
“Standing up is a little thing that’s actually a big thing” The quote above is from an interview with a person who is currently participating in a research project. The study is looking at the impact of regular standing in standing frames in people with MS who cannot walk more than a few steps and spend most of their day sitting down. This article looks at why standing is potentially an important activity for people at this stage of their MS and reports on this research project.
What is a standing frame? A standing frame is a specially constructed piece of equipment that enables someone who cannot stand independently to stand in a safe, fully upright position. Once in the frame, the person’s lower body is held firmly by straps at the ankles, knees and hips allowing the upper body to move freely in space. Different types of frame are available. Some are picture: XhyraGraf electrically operated and these can raise the person
8
www.mstrust.org.uk
How could standing help people with MS? For some people with MS, the ability to stand and balance independently can become more difficult as their legs become weaker. Although standing may still be possible, poor balance often means that arms have to be used for support instead of for other activities. Once this stage has been reached, standing may only happen for brief periods, to transfer or take a few steps, and most of the day is spent sitting in an easy chair or wheelchair. Sitting for long periods of time can cause other problems to develop which can further increase disability and reduce independence. These include weakening of the trunk and upper body muscles because they are not getting the opportunity to move freely in space. This weakness can lead to increased disability and make transfers and balance even worse and activities of daily living more difficult to perform. Other complications can also occur when people sit for long periods. These include painful joints, constipation, increased spasms, pressure ulcers and tightness in the muscles. These problems of prolonged sitting often come on slowly and may be mistaken for worsening of the MS, but many may be preventable or reversible if the body is given the opportunity to change position and exercise on a regular basis. Regular standing in a standing frame may help to prevent or relieve some of these problems as the upper body is free to exercise, the leg and trunk muscles are stretched and an upright position may help relieve constipation and spasms. This research project is currently testing out these theories in nine people with MS.
users or able only to walk short distances with a frame. Measurements of their movements and balance were taken fortnightly for a number of months as a baseline. Standing frames were then delivered to their homes and they were asked to try to stand for at least 30 minutes three times a week for between 16 and 24 weeks. Measurements were repeated during the standing phase. The study is being carried in their homes as this would be the ideal place for people with MS to self-manage their own standing programme. The study is looking at not only the physical effects of standing but the psychological effects. Participants have been interviewed to explore their experience of standing upright as standing may help people who spend most of their time sitting to feel better in themselves. MS is a difficult disease to cope with psychologically so an increased feeling of well-being is an important effect and needs investigating. The physical measures collected before and after standing are: 1. Ability to perform activities of daily living 2. Ability to perform limb movements and activities such as rolling over and balancing 3. Spasm frequency 4. Bowel frequency 5. Pain levels
Results of the study The results are being analysed at the moment and will be reported at a later date. If they show that people with MS benefit from regular standing in a frame, ideally, people with MS would be encouraged by physiotherapists to use these frames at home as soon as their ability to stand began to deteriorate. Reference 1. Baker K, et al. Therapeutic standing for people with multiple sclerosis: efficacy and feasibility. International Journal of Therapy and Rehabilitation 2007;14(3):104-109.
Wendy Hendrie is also the co-author of the MS Trust book Are you sitting comfortably..? a self-help guide to good posture in sitting.
The study The study is based at the University of East Anglia. Nine volunteers, three men and six women, are taking part and all are either full-time wheelchair
Call: 0800 032 38 39
9
Dropping unwanted baggage
Martin Baum I’m 50 years old and have MS, although it’s fair to say that if I wasn’t using my stick and you were to meet me for the first time, you’d be pretty hard pressed to know. This used to bother me and I felt I had to justify myself. Somehow I needed to explain how I was affected by the myriad symptoms that were invisible to anyone who didn’t know better. These days - I’m delighted to say - other people’s perceptions are an unimportant factor in the way I live my life; in the way I live with MS. Although I was first diagnosed in the 1970s when I was in my teens, it has only been in the past few years that I realised it wasn’t multiple sclerosis that was causing me so many problems, but more the way I reacted to it. In fact - and not to put too fine a point on it - I believe the reason I had always found living with MS so difficult was because I had wasted too many years living the illness, instead of living a life.
Chapter and verse In the past, if people had been kind enough to ask me how I was coping, I always took their concern as a sure sign they really wanted to know how I was. A simple acknowledgment would have been enough, but instead I would tell them - chapter and verse - listing way too much detail. I was oblivious to their eyes glazing over as I took them into my world of temporary blindness, slack speech, numbness, lack of bladder control and other bodily functions and malfunctions. To me, these were real issues and I insisted on broadcasting them. This, as I have come to recognise, is a fairly common occurrence amongst others in a similar situation to myself. Because many MS-related symptoms are skin deep and generally go unnoticed by others, somehow there was an instinctive need on my part to justify
what was going wrong with my body. I never saw it as a case of ‘too much information’, because without it there was a genuine fear that somebody would ‘out’ me as being a fraudster, that they would accuse me of using an unseen illness as a way of attracting attention, which, in a way, I did. As absurd as it seems, the very fact I felt I had to justify myself to others certainly didn’t help me come to terms with having MS. It’s all part of being human, I suppose, but of course the downside to being caught in that mindset is the difficulty of building a life outside of MS, because the illness becomes all too consuming. I’m still not sure when or how it happened, but from the moment I decided that I no longer felt I had to apologise for actually having good days and appearing ‘normal’ was the moment my own circumstances changed for the better. I was fed up with making the state of my health the main topic of conversation, and once the penny dropped I moved away from being a victim of MS and perhaps, more tellingly, myself.
A sense of normality Quite literally, from that moment on, if anybody asked me how I was feeling I would say I was doing OK and really mean it. If I needed help, I finally accepted there were friends and neighbours who, if asked, were only too happy to lend a hand without the need for explanation. For the first time, I had discovered something that had been lacking since the whole MS rigmarole began three decades previously - an actual sense of normality which acted as a catalyst to a far better quality of life.
control, I found a new direction for my writing. Such is the way of things, I wrote To be or not to be, a yoof-speak guide to Shakespeare, a book that became a best seller However, this isn’t simply a case of ‘look how well I’ve done’, because I accept that I still have a lot to learn. But I would like to think I can help others to take a look at what can be achieved once you step away and start living outside MS. For my part, I am convinced that if I hadn’t taken that step, embracing life instead of only existing within it, then the chances are nothing much would have changed because I wouldn’t have been in a position to make those changes. The best example of a person with MS doing great things by having a different point of focus is Debbie Purdy, who fought and won her battle to clarify the law to stop her husband being arrested in the event of assisting her to take her own life. I remember thinking how well she looked outside the High Court - bubbling with an enthusiasm that belied her condition - and the thought occurred to me that under different circumstances, I would never have known that she had MS. That day Debbie Purdy was not a victim, but somebody with a purpose and a confidence that shone through. Now with that infamous victory about the consequences of dealing with her death in the future over, I hope she’s able to keep her focus away from dying and concentrate firmly on living a life instead. What I have discovered is that having MS is not just a battle of the body, it’s a constant battle of the mind. After thirty years of carrying it around like unwanted baggage, I now know that it can just as easily be let go of.
Although my own battles with MS are something I constantly find quite debilitating, these days it’s something I deal with without tormenting myself that the disease is in any way getting worse. After all, that was how I wasted too many years concentrating on the ‘what ifs’ instead of the ‘what is’. It was like waiting for the other shoe to drop which, thankfully, hasn’t happened yet. The fact is that, for now, my condition remains in the relapsing remitting stage and for that I continue to be very grateful. By accepting my circumstances for what they are, I have finally been able to move on with my life.
Paul L
Living outside MS This positivity has now enabled me, at last, to live my life in a way that I’d never previously allowed myself, especially with regard to my career as an author and satirist. Perhaps it was just a coincidence or maybe it was a case of positivity attracting more positivity, but as my mind became less addled by an illness with symptoms I couldn’t
10
www.mstrust.org.uk
For more on Martin’s books, visit www.yoofspeak.net
Call: 0800 032 38 39
11
Dropping unwanted baggage
Martin Baum I’m 50 years old and have MS, although it’s fair to say that if I wasn’t using my stick and you were to meet me for the first time, you’d be pretty hard pressed to know. This used to bother me and I felt I had to justify myself. Somehow I needed to explain how I was affected by the myriad symptoms that were invisible to anyone who didn’t know better. These days - I’m delighted to say - other people’s perceptions are an unimportant factor in the way I live my life; in the way I live with MS. Although I was first diagnosed in the 1970s when I was in my teens, it has only been in the past few years that I realised it wasn’t multiple sclerosis that was causing me so many problems, but more the way I reacted to it. In fact - and not to put too fine a point on it - I believe the reason I had always found living with MS so difficult was because I had wasted too many years living the illness, instead of living a life.
Chapter and verse In the past, if people had been kind enough to ask me how I was coping, I always took their concern as a sure sign they really wanted to know how I was. A simple acknowledgment would have been enough, but instead I would tell them - chapter and verse - listing way too much detail. I was oblivious to their eyes glazing over as I took them into my world of temporary blindness, slack speech, numbness, lack of bladder control and other bodily functions and malfunctions. To me, these were real issues and I insisted on broadcasting them. This, as I have come to recognise, is a fairly common occurrence amongst others in a similar situation to myself. Because many MS-related symptoms are skin deep and generally go unnoticed by others, somehow there was an instinctive need on my part to justify
what was going wrong with my body. I never saw it as a case of ‘too much information’, because without it there was a genuine fear that somebody would ‘out’ me as being a fraudster, that they would accuse me of using an unseen illness as a way of attracting attention, which, in a way, I did. As absurd as it seems, the very fact I felt I had to justify myself to others certainly didn’t help me come to terms with having MS. It’s all part of being human, I suppose, but of course the downside to being caught in that mindset is the difficulty of building a life outside of MS, because the illness becomes all too consuming. I’m still not sure when or how it happened, but from the moment I decided that I no longer felt I had to apologise for actually having good days and appearing ‘normal’ was the moment my own circumstances changed for the better. I was fed up with making the state of my health the main topic of conversation, and once the penny dropped I moved away from being a victim of MS and perhaps, more tellingly, myself.
A sense of normality Quite literally, from that moment on, if anybody asked me how I was feeling I would say I was doing OK and really mean it. If I needed help, I finally accepted there were friends and neighbours who, if asked, were only too happy to lend a hand without the need for explanation. For the first time, I had discovered something that had been lacking since the whole MS rigmarole began three decades previously - an actual sense of normality which acted as a catalyst to a far better quality of life.
control, I found a new direction for my writing. Such is the way of things, I wrote To be or not to be, a yoof-speak guide to Shakespeare, a book that became a best seller However, this isn’t simply a case of ‘look how well I’ve done’, because I accept that I still have a lot to learn. But I would like to think I can help others to take a look at what can be achieved once you step away and start living outside MS. For my part, I am convinced that if I hadn’t taken that step, embracing life instead of only existing within it, then the chances are nothing much would have changed because I wouldn’t have been in a position to make those changes. The best example of a person with MS doing great things by having a different point of focus is Debbie Purdy, who fought and won her battle to clarify the law to stop her husband being arrested in the event of assisting her to take her own life. I remember thinking how well she looked outside the High Court - bubbling with an enthusiasm that belied her condition - and the thought occurred to me that under different circumstances, I would never have known that she had MS. That day Debbie Purdy was not a victim, but somebody with a purpose and a confidence that shone through. Now with that infamous victory about the consequences of dealing with her death in the future over, I hope she’s able to keep her focus away from dying and concentrate firmly on living a life instead. What I have discovered is that having MS is not just a battle of the body, it’s a constant battle of the mind. After thirty years of carrying it around like unwanted baggage, I now know that it can just as easily be let go of.
Although my own battles with MS are something I constantly find quite debilitating, these days it’s something I deal with without tormenting myself that the disease is in any way getting worse. After all, that was how I wasted too many years concentrating on the ‘what ifs’ instead of the ‘what is’. It was like waiting for the other shoe to drop which, thankfully, hasn’t happened yet. The fact is that, for now, my condition remains in the relapsing remitting stage and for that I continue to be very grateful. By accepting my circumstances for what they are, I have finally been able to move on with my life.
Paul L
Living outside MS This positivity has now enabled me, at last, to live my life in a way that I’d never previously allowed myself, especially with regard to my career as an author and satirist. Perhaps it was just a coincidence or maybe it was a case of positivity attracting more positivity, but as my mind became less addled by an illness with symptoms I couldn’t
10
www.mstrust.org.uk
For more on Martin’s books, visit www.yoofspeak.net
Call: 0800 032 38 39
11
Constipation a difficult story to tell
I did this for the first week and it started to work, but then it turned into disaster. It went too far the other way and caused bowel incontinence!
work, if it was going to give me back some control and if it was going to make my life a little more comfortable, then I was willing to give it a try.
Apart from the obvious, it was a really difficult situation, because it completely knocked my confidence. I couldn't go out anywhere, because I was afraid of what might happen. Obviously I stopped taking the Movicol as I couldn't face the consequences. Also it is not a pleasant tasting drink, even though I had chocolate flavour!
There is a separate nurse who deals with this system and it was arranged for her to come out to our house and chat to us and show us how it worked. It is done on prescription, so the nurse needed to get the prescription sorted out before I could start.
I went back to see the nurse and explained what had happened. She said that Movicol isn't for everyone, so we decided that I would try increasing my liquid intake even more, eating breakfast and routinely trying to go to the toilet, whether I needed to or not. She showed me the best way to sit on the toilet to encourage your bowels to open.
Amelia Southard
For the first couple of weeks this seemed to be going OK, but then I ended up being severely constipated again until it had been almost two weeks without going at all. I was in quite a state and so I had to phone the nurse and ask for some help. Because of the severity of the constipation, she suggested I take eight sachets of Movicol at once to force me to go. Of course, this filled me with dread. I managed to take six. It was all I could face.
The bladder and bowels are not easy subjects for us, as a nation, to talk about, but I think if we were more open, it wouldn't be such a difficult or embarrassing issue for any of us and would help us find information and people to talk to.
important when needing to keep your bowels regular. It is actually quite difficult, when you don't drink very much, to force yourself to drink more. But I have started drinking more water and I am actually enjoying water now.
I have had issues with my bladder and bowels for a little while now, but it has been getting worse over the last few months. I was referred to the Bladder and Bowel care team at the local hospital, where I had an appointment with a lovely nurse. She put me at ease and made me realise that this is actually quite a common problem. It doesn't make it any easier though! After talking through my issues, she decided that it would be better to concentrate on my constipation and try and get that sorted, because that may be having an impact on some of the bladder problems.
We then talked about my diet and I explained that my husband and I had decided that we wanted to lose weight, so our diet is actually quite healthy. However, I was really very constipated and would be lucky if I was going once or twice a week.
The first thing that was identified was that I don't drink enough. Keeping yourself hydrated is really
12
Laxatives The nurse decided that the option to try was Movicol. Movicol is a sugar and salt mix and the idea behind it is to soften the stool, making it easier to pass. She wanted me to take one sachet, twice a day for the first three days and then go to one sachet a day.
www.mstrust.org.uk
It is quite odd to begin with, because it is not a natural thing to do. But the more I have used it, the more it is becoming just a part of my daily routine. It means that I am in control. I decide when I use it, so that I am going regularly and I don't need to worry about these problems. It is all done within about 30 minutes, so no more sitting on the toilet for up to three hours at a time. It has helped with the continual bloated feeling that I would get. I still get bloated, but it is nothing compared to what it used to be. Peristeen really has made a difference to me. It is not pleasant to do and I need my husband's help, which is frustrating, but compared to how I was feeling when I wouldn't be able to go for days on end, this is worth it.
The problem with Movicol is that there is no time scale as to when or if it is going to work. You take the sachets and then you just have to wait. I took my six sachets and ended up staying in my house for the next 24 hours as I had no idea what would happen. I did manage to have some bowel movement, but it wasn't the clear out that I had expected. I had been told by the nurse that if I still wasn't going regularly, then I should take a single sachet every couple of days. As it was, I didn't do this, because I felt that it might go too far the other way again and I just couldn't face that. The nurse made an emergency appointment for me and I went into the hospital to see her. I went through every thing that had happened and I asked if there were other options, because Movicol was not a satisfactory solution for me. It was a big ogre in the corner of my kitchen and I couldn't bear the idea of taking it and the consequences that I would have to face.
Another approach The nurse then suggested a procedure that might be possible for me to try - if I was open to the idea. At this stage I was open to any suggestions. The system that she suggested is called Peristeen. It is what is known as an anal irrigation system whereby water is introduced into the bowel encouraging the muscles to contract and making you go to the toilet. This did scare me quite a lot, but if it was going to
For more information talk to you continence nurse or visit the website of Coloplast who supply this system http://tinyurl.com/peristeen This article is adapted with permission from Amelia’s blog Tales of Life with Multiple Sclerosis http://tinyurl.com/amelia-blog
Call: 0800 032 38 39
13
Constipation a difficult story to tell
I did this for the first week and it started to work, but then it turned into disaster. It went too far the other way and caused bowel incontinence!
work, if it was going to give me back some control and if it was going to make my life a little more comfortable, then I was willing to give it a try.
Apart from the obvious, it was a really difficult situation, because it completely knocked my confidence. I couldn't go out anywhere, because I was afraid of what might happen. Obviously I stopped taking the Movicol as I couldn't face the consequences. Also it is not a pleasant tasting drink, even though I had chocolate flavour!
There is a separate nurse who deals with this system and it was arranged for her to come out to our house and chat to us and show us how it worked. It is done on prescription, so the nurse needed to get the prescription sorted out before I could start.
I went back to see the nurse and explained what had happened. She said that Movicol isn't for everyone, so we decided that I would try increasing my liquid intake even more, eating breakfast and routinely trying to go to the toilet, whether I needed to or not. She showed me the best way to sit on the toilet to encourage your bowels to open.
Amelia Southard
For the first couple of weeks this seemed to be going OK, but then I ended up being severely constipated again until it had been almost two weeks without going at all. I was in quite a state and so I had to phone the nurse and ask for some help. Because of the severity of the constipation, she suggested I take eight sachets of Movicol at once to force me to go. Of course, this filled me with dread. I managed to take six. It was all I could face.
The bladder and bowels are not easy subjects for us, as a nation, to talk about, but I think if we were more open, it wouldn't be such a difficult or embarrassing issue for any of us and would help us find information and people to talk to.
important when needing to keep your bowels regular. It is actually quite difficult, when you don't drink very much, to force yourself to drink more. But I have started drinking more water and I am actually enjoying water now.
I have had issues with my bladder and bowels for a little while now, but it has been getting worse over the last few months. I was referred to the Bladder and Bowel care team at the local hospital, where I had an appointment with a lovely nurse. She put me at ease and made me realise that this is actually quite a common problem. It doesn't make it any easier though! After talking through my issues, she decided that it would be better to concentrate on my constipation and try and get that sorted, because that may be having an impact on some of the bladder problems.
We then talked about my diet and I explained that my husband and I had decided that we wanted to lose weight, so our diet is actually quite healthy. However, I was really very constipated and would be lucky if I was going once or twice a week.
The first thing that was identified was that I don't drink enough. Keeping yourself hydrated is really
12
Laxatives The nurse decided that the option to try was Movicol. Movicol is a sugar and salt mix and the idea behind it is to soften the stool, making it easier to pass. She wanted me to take one sachet, twice a day for the first three days and then go to one sachet a day.
www.mstrust.org.uk
It is quite odd to begin with, because it is not a natural thing to do. But the more I have used it, the more it is becoming just a part of my daily routine. It means that I am in control. I decide when I use it, so that I am going regularly and I don't need to worry about these problems. It is all done within about 30 minutes, so no more sitting on the toilet for up to three hours at a time. It has helped with the continual bloated feeling that I would get. I still get bloated, but it is nothing compared to what it used to be. Peristeen really has made a difference to me. It is not pleasant to do and I need my husband's help, which is frustrating, but compared to how I was feeling when I wouldn't be able to go for days on end, this is worth it.
The problem with Movicol is that there is no time scale as to when or if it is going to work. You take the sachets and then you just have to wait. I took my six sachets and ended up staying in my house for the next 24 hours as I had no idea what would happen. I did manage to have some bowel movement, but it wasn't the clear out that I had expected. I had been told by the nurse that if I still wasn't going regularly, then I should take a single sachet every couple of days. As it was, I didn't do this, because I felt that it might go too far the other way again and I just couldn't face that. The nurse made an emergency appointment for me and I went into the hospital to see her. I went through every thing that had happened and I asked if there were other options, because Movicol was not a satisfactory solution for me. It was a big ogre in the corner of my kitchen and I couldn't bear the idea of taking it and the consequences that I would have to face.
Another approach The nurse then suggested a procedure that might be possible for me to try - if I was open to the idea. At this stage I was open to any suggestions. The system that she suggested is called Peristeen. It is what is known as an anal irrigation system whereby water is introduced into the bowel encouraging the muscles to contract and making you go to the toilet. This did scare me quite a lot, but if it was going to
For more information talk to you continence nurse or visit the website of Coloplast who supply this system http://tinyurl.com/peristeen This article is adapted with permission from Amelia’s blog Tales of Life with Multiple Sclerosis http://tinyurl.com/amelia-blog
Call: 0800 032 38 39
13
moment of my involvement. Again, the people who work at GTFM are the kindest you would ever wish to meet - it renews my faith in human kindness every time I visit.
Never give up never give in
Tuija Aalto
Finally I resolved to see as much of the world as I could. I have seen rugby in South Africa, New Zealand, Europe, Hong Kong and Dubai. I hope, with the help of my wonderful, understanding wife and my twin brother, to continue gadding about. The British Lions in Australia being my aim for 2013! So my two watch words/phrases remain at the forefront of my thoughts! “Because we're here lad - there’s nobody else!” tells me to go for everything that brings me happiness and repays the kindness of the ordinary folk of my homeland.
Alun Jones
And
The fight to keep to a life with meaning
“Never give up - never give in” tells me there is no point in becoming a recluse and meekly accepting your own medical fate. Get up, get in there and fight it. Show the world that MS will not be allowed to be a badge of despair.
Back in 2000 at the age of 50, I was diagnosed with MS. After many weeks of pain, scans, lumbar punctures and eye co-ordination awareness tests, finally I knew what was giving me so much difficulty.
NEVER GIVE UP - NEVER GIVE IN! Live life to the fullest measure possible. It works for me, try it!
At the time I was a full time employee for a teachers union with responsibility for Wales and the new Welsh Assembly, which had just been inaugurated. I loved my work having been a teacher and then teachers' representative for almost 30 years. I struggled on for almost a year but finally the walking too and fro from office to the Assembly and the driving around Wales was too much. I took a retirement package and left but I decided there and then that I was not going to let this illness beat me. My watch words in work had been a line from the film Zulu - in answer to a question, “Why us?” from a soldier, the Sgt Major says “Because we’re here lad - there’s nobody else, just us!” I resolved to continue to cling to those words and NEVER GIVE UP - NEVER GIVE IN! What could I do? Well first I needed to know more about this illness that afflicted me. I learned about the various types of MS and discovered I now had the secondary progressive type. All the more reason to pack in as much as I could - I was not going to be maudlin - I was going to enjoy life and continue to pay back those who helped me. Payback 1 was to my family. I cared for my aged father for many years and found a new meaning to care via the wonderful people who aided me through a difficult time right up to my father's death. I became a trustee/board member of the carers charity Crossroads thereafter and maintain this link. Payback 2 was to the sport I have loved since I could walk - rugby, notably MY team Pontypridd RFC. Ever since I came 'home' to Wales I had been a season ticket holder at my valley club. Years of enjoyment deserved some
14
David Nutter
Are you struggling to get adequate insurance cover?
Angelo Fallia
recompense. I volunteered to help in any way I could office work, selling tickets for big games (and there were some in the early days of the new millennium), painting the fences and goalposts atop a cherry picker. Finally I served on the Board of Directors and became Secretary to the Supporters' Club. The kindness, friendship, helpfulness, acceptance of my condition and sheer good naturedness of the superb people of Ponty RFC are a source of immense pride to me and no little gratitude. As you can imagine the trench humour of a rugby club is fairly near the bone and sometimes downright rude if you take it the wrong way. I have had numerous nicknames - Davros (the evil genius in a wheelchair from Dr Who) being the only one I can commit to paper! Payback 3 arose from my rugby connections. I was asked to broadcast a weekly rugby preview on the local volunteer community radio station, GTFM 107.9. This grew into a supporter phone in programme, then a weekly rugby interview with local players and personalities, then Welsh legends like JPR Williams and JJ Williams. Finally I was coaxed to the other side of the microphone and I now do a four hour music/chat show each week. I am now also a trustee of the station and I love every
www.mstrust.org.uk
Obtaining insurance with multiple sclerosis isn’t always easy and it can be difficult when searching the market to find an insurer who will meet all of your needs adequately. While the Multiple Sclerosis Trust cannot recommend specific companies, Unique has developed a range of insurance services that are tailored to meet the requirements of people with multiple sclerosis. These products can accommodate families too and may well prove to be a useful starting point in your insurance search.
To request information or a no obligation quotation contact Unique on 01603 828 387, email mstrust@heathlambert.com or visit www.mstrust.org.uk/insurance
Unique offer travel insurance, life insurance, home insurance and motor insurance, with the following benefits: I Travel Insurance with no separate referral for medical screening, which allows for quote to purchase in one call. I A panel of insurance companies with a realistic underwriting approach to multiple sclerosis. I Home Insurance which includes cover for accidental damage to stair lifts, hoists, specially adapted bathing/bedroom equipment, through floor lifts, exercise apparatus. In addition Unique make a donation to the Multiple Sclerosis Trust for every policy sold, at no additional cost to you.
Unique is a trading name of Heath Lambert Limited. Heath Lambert Limited is authorised and regulated by the Financial Services Authority. Registered office: 133 Houndsditch, London EC3A 7AH. Registered Nos: 1199129 and 0772217 England and Wales
Call: 0800 032 38 39
15
moment of my involvement. Again, the people who work at GTFM are the kindest you would ever wish to meet - it renews my faith in human kindness every time I visit.
Never give up never give in
Tuija Aalto
Finally I resolved to see as much of the world as I could. I have seen rugby in South Africa, New Zealand, Europe, Hong Kong and Dubai. I hope, with the help of my wonderful, understanding wife and my twin brother, to continue gadding about. The British Lions in Australia being my aim for 2013! So my two watch words/phrases remain at the forefront of my thoughts! “Because we're here lad - there’s nobody else!” tells me to go for everything that brings me happiness and repays the kindness of the ordinary folk of my homeland.
Alun Jones
And
The fight to keep to a life with meaning
“Never give up - never give in” tells me there is no point in becoming a recluse and meekly accepting your own medical fate. Get up, get in there and fight it. Show the world that MS will not be allowed to be a badge of despair.
Back in 2000 at the age of 50, I was diagnosed with MS. After many weeks of pain, scans, lumbar punctures and eye co-ordination awareness tests, finally I knew what was giving me so much difficulty.
NEVER GIVE UP - NEVER GIVE IN! Live life to the fullest measure possible. It works for me, try it!
At the time I was a full time employee for a teachers union with responsibility for Wales and the new Welsh Assembly, which had just been inaugurated. I loved my work having been a teacher and then teachers' representative for almost 30 years. I struggled on for almost a year but finally the walking too and fro from office to the Assembly and the driving around Wales was too much. I took a retirement package and left but I decided there and then that I was not going to let this illness beat me. My watch words in work had been a line from the film Zulu - in answer to a question, “Why us?” from a soldier, the Sgt Major says “Because we’re here lad - there’s nobody else, just us!” I resolved to continue to cling to those words and NEVER GIVE UP - NEVER GIVE IN! What could I do? Well first I needed to know more about this illness that afflicted me. I learned about the various types of MS and discovered I now had the secondary progressive type. All the more reason to pack in as much as I could - I was not going to be maudlin - I was going to enjoy life and continue to pay back those who helped me. Payback 1 was to my family. I cared for my aged father for many years and found a new meaning to care via the wonderful people who aided me through a difficult time right up to my father's death. I became a trustee/board member of the carers charity Crossroads thereafter and maintain this link. Payback 2 was to the sport I have loved since I could walk - rugby, notably MY team Pontypridd RFC. Ever since I came 'home' to Wales I had been a season ticket holder at my valley club. Years of enjoyment deserved some
14
David Nutter
Are you struggling to get adequate insurance cover?
Angelo Fallia
recompense. I volunteered to help in any way I could office work, selling tickets for big games (and there were some in the early days of the new millennium), painting the fences and goalposts atop a cherry picker. Finally I served on the Board of Directors and became Secretary to the Supporters' Club. The kindness, friendship, helpfulness, acceptance of my condition and sheer good naturedness of the superb people of Ponty RFC are a source of immense pride to me and no little gratitude. As you can imagine the trench humour of a rugby club is fairly near the bone and sometimes downright rude if you take it the wrong way. I have had numerous nicknames - Davros (the evil genius in a wheelchair from Dr Who) being the only one I can commit to paper! Payback 3 arose from my rugby connections. I was asked to broadcast a weekly rugby preview on the local volunteer community radio station, GTFM 107.9. This grew into a supporter phone in programme, then a weekly rugby interview with local players and personalities, then Welsh legends like JPR Williams and JJ Williams. Finally I was coaxed to the other side of the microphone and I now do a four hour music/chat show each week. I am now also a trustee of the station and I love every
www.mstrust.org.uk
Obtaining insurance with multiple sclerosis isn’t always easy and it can be difficult when searching the market to find an insurer who will meet all of your needs adequately. While the Multiple Sclerosis Trust cannot recommend specific companies, Unique has developed a range of insurance services that are tailored to meet the requirements of people with multiple sclerosis. These products can accommodate families too and may well prove to be a useful starting point in your insurance search.
To request information or a no obligation quotation contact Unique on 01603 828 387, email mstrust@heathlambert.com or visit www.mstrust.org.uk/insurance
Unique offer travel insurance, life insurance, home insurance and motor insurance, with the following benefits: I Travel Insurance with no separate referral for medical screening, which allows for quote to purchase in one call. I A panel of insurance companies with a realistic underwriting approach to multiple sclerosis. I Home Insurance which includes cover for accidental damage to stair lifts, hoists, specially adapted bathing/bedroom equipment, through floor lifts, exercise apparatus. In addition Unique make a donation to the Multiple Sclerosis Trust for every policy sold, at no additional cost to you.
Unique is a trading name of Heath Lambert Limited. Heath Lambert Limited is authorised and regulated by the Financial Services Authority. Registered office: 133 Houndsditch, London EC3A 7AH. Registered Nos: 1199129 and 0772217 England and Wales
Call: 0800 032 38 39
15
MS Trust Information Services
Order form For a full list of publications visit www.mstrust.org.uk/publications or order the Publication Leaflet
DVDs Move it for MS – a DVD of exercises for people with MS (£1)
Books Are you sitting comfortably..? a self-help guide to good posture in sitting Living with fatigue MS and me - a self-management guide to living with MS MS explained Talking with your kids about MS Kids’ guide to MS for children aged 6-10 Young person's guide to MS for people aged 10-16
Spasticity chatroom Spasticity, spasms and muscle stiffness are a major source of mobility problems for people with MS. The next MS Trust chatroom will allow people with these symptoms to share thoughts and questions with specialist health professionals and other people with MS. The chatroom will be open on Tuesday 23 November from 10am to 7pm. If you are unable to join the chatroom on the day, post or email your questions or comments in advance to the address at the bottom of this page. More details of the session can be found at www.mstrust.org.uk/chatrooms
MS factsheets Regularly updated, we now have more than 20 titles available Bladder problems Bowel problems Cladribine Fingolimod Functional electrical stimulation (FES) Low does naltrexone (LDN) Natalizumab (Tysabri)
New phone number The MS Trust Information Service now has a freephone number. If you have questions about any aspect of MS, call us on 0800 032 38 39
Chatroom transcripts Fatigue
Publication leaflet The full list of titles available from the MS Trust All items are free unless stated, but if you would like to make a donation towards our costs, we would be very grateful
I enclose a cheque payable to the MS Trust If you Gift Aid your donation, we can reclaim the tax! I would like the MS Trust to treat this donation and all donations I have made for the four years prior to this year and all donations I make from the date of this declaration until I notify you otherwise, as Gift Aid donations. Signed
Date
If you would like an email reminder for this and future sessions, contact info@mstrust.org.uk
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You must pay an amount of Income Tax and/or Capital Gains Tax in each tax year (6 April 2010 to 5 April 2011) at least equal to the tax that the MS Trust will claim from HM Revenue and Customs on your Gift Aid donation(s) for that tax year. Please notify us if you change your name or address.
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Our team of information professionals will find reliable, independent information to help you live your life with MS and have informed conversations with your health professionals. Calls are free from landlines in the UK.
MS Trust news services The news services on the MS Trust's website have been redesigned to bring you the latest information on MS and research. Visit www.mstrust.org.uk/news to find updates on new publications, upcoming events, fundraising opportunities and also MS Trust press releases and comments on stories in the news. Sign up for news alerts and get this information sent to you each Friday.
Christmas opening times
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The MS Trust Information Service will be open as normal, Monday - Friday 9am to 5pm, with the following exceptions:
Postcode
Christmas Eve - 9am-1pm
Telephone number
Monday 27 Dec - closed
A copy of the MS Trust’s data protection policy is available on request Return to: MS Trust, Spirella Building, Letchworth Garden City, Herts, SG6 4ET
Inside this issue...
Welcome to Open Door
CCSVI
6
Standing
8
Peristeen
12
The last three months have been both frustrating and disappointing in the world of MS. The MS Society's decision to close their four respite homes caused much controversy and was a blow to those who use them and their families. The homes had a reputation for expertise in the care of those severely affected by MS and it will be a challenge for them to find that 'gold standard' of excellence elsewhere. The availability of residential respite care is important for the wellbeing, not only of the person who has MS, but also for their family and carers. Ultimately the provider is unimportant, so long as the quality is maintained and this essential service is not lost. MS services are being challenged on a number of fronts at present, with access to work assessments, cutbacks to services and threats to specialist nurse posts - the fight for ongoing availability of quality respite care must now be added to the list. The European license for cladribine was also recently turned down on the grounds of risk. Whilst disappointing, it is important to evaluate the risks not solely focus on the benefits of an oral drug. The more we can find out about you; the better we can get at meeting your needs and if we can understand our supporters better, it will help us to engage other people with our work. We have devised a short survey which is enclosed with this copy of Open Door and we would be very grateful if you could spare the time to give us your feedback. The survey can also be completed on our website at www.mstrust.org.uk/survey Many thanks to those of you who support our work by buying our Christmas cards, as well as raising funds for us they also raise awareness of MS. With very best wishes
Also inside: Pam Macfarlane Chief Executive
Tuesday 28 Dec - closed Monday 3 January - closed
Multiple Sclerosis Trust Spirella Building, Bridge Road, Letchworth Garden City, Hertfordshire SG6 4ET T 01462 476700 F 01462 476710 E info@mstrust.org.uk www.mstrust.org.uk Registered charity no. 1088353
16
November 2010
www.mstrust.org.uk
Accentuate the positive Everyone has their own ways of coping with MS. In this issue Martin Baum and Alun Jones each describe how they reassessed the effect MS was having on their lives and made positive decisions about how to face life with the condition. Read Martin’s story on page 10 and Alun’s on page 14.
www.mstrust.org.uk
Martin Baum
Call: 0800 032 38 39
MS services audit
2
News
3
Research news
4
Dropping unwanted baggage
10
Never give up never give in
14
MS Trust 16 Information services