All About Multiple Sclerosis

More MS news articles for January 2003

Tips for living with MS

written by and for people with multiple sclerosis

http://www.mstrust.org.uk/info/tips2.pdf

November, 2002
Published in the United Kingdom by the Multiple Sclerosis Trust
The Multiple Sclerosis Trust
ISBN 1-904156-03-7

Introducing this booklet and the MS Trust …

During 2002, the MS Trust commissioned a research project into the information needs of people with multiple sclerosis. 2133 people took part through focus groups and questionnaires and many of these offered to others their “tips” for publication in this booklet. The first objective of the MS Trust is to offer information about MS which is positive and constructive. We do this through newsletters, through a range of publications and through our website. Even more importantly, our specialist librarians answer individual questions from people affected by MS from our unique library of books, journals and papers – questions as varied as are the people who ask them!

And what better information can there be than these tips gleaned from the experts who live with MS themselves?

Selection and sorting was challenging; we have broadly grouped the wealth of tips into sections:

And finally, there are the contact details for all the organisations mentioned.

If you are new to the work of the MS Trust, we would love to hear from you. Our newsletters and information service are freely provided; all you need to do to receive them is get in touch:

MS Trust
Spirella Building
Letchworth
Herts SG6 4ET
Tel: 01462 476700
email: info@mstrust.org.uk
web: http://www.mstrust.org.uk

Maintaining a Positive Outlook

There is no denying that living with MS can be difficult, frustrating and at times, frightening, particularly when you are first diagnosed. In the initial stages, it is natural to grieve for what you have lost. Over time, people find ways to adapt and come to terms with the changes that MS can bring, developing effective coping strategies which allow them to maintain a positive outlook and to live full lives. Here are some tips from people who have learnt to live with MS:

Saving Time and Energy

The saying “every little helps” is certainly true in the case of MS. Small changes to the way you do things can add up to make a huge difference to how you get through the day. These are useful tips from people who live with MS:

In the home

Out and about Pacing yourself Getting Around

When you have a condition like MS, your independence becomes even more precious. Make the most of the support that is available and plan ahead to avoid the unexpected:

Making The Most of Benefits

It can sometimes appear that the benefits system exists to make life difficult, rather then helping you to access the resources to which you are entitled! Don’t despair With persistence and patience, you will find your way through the maze:

Medical Matters

MS is a complex and unpredictable condition. Symptoms can come and go and treatments may need to be adjusted from time to time. Be prepared to adapt to changing circumstances; these tips may help you make the most of your medical appointments:

Liaising with healthcare professionals

Managing symptoms Complementary and Alternative Therapies

Some people with MS find that complementary therapies can help to ease symptoms or improve well-being. Everyone is different. What works for one person may do absolutely nothing for somebody else so be prepared to keep an open mind:

Specific therapies that have been suggested as being helpful for some people include: Nutritional Needs

The link between MS and diet has not been proven but it is generally accepted that people with MS are well advised to follow a balanced, healthy diet. Some people find that dietary modification, in terms of taking specific supplements or avoiding particular foods, can be helpful:

Getting Equipped

A huge amount of specialist equipment is available to make life easier. It can be hard to accept that you need this type of help but try to regard these items in the same way as you would a washing-machine or dish-washer, ie a labour-saving device that is there to help you get the most out of life:
 

Educational Needs

Having MS does not mean that you cannot pursue your studies, although you may need to adjust your plans to take account of your condition:

Work, Rest and Play

For some people, MS impacts on virtually every aspect of their life, while for others it is very much 'business as normal'. However your MS affects you, make sure you make the most of your abilities:

Getting Informed

When it comes to finding out about MS, everyone is different. Some people feel much more in control if they are fully informed while others prefer to gather information on a strictly ‘need to know’ basis:

Useful Contacts

The following organisations were all suggested by people who contributed tips and ideas

National MS Organisations

MS TRUST
provides information for anyone affected by MS, provides education for MS nurses and other health professionals and funds applied research

Spirella Building, Letchworth, Herts SG6 4ET
01462 476700
info@mstrust.org.uk
http://www.mstrust.org.uk

MS SOCIETY
funds research, runs holiday homes and respite care, provides grants, education, information and training for people affected by MS

372 Edgware Road, London NW2 6DT
Helpline – 0808 800 8000
info@mssociety.org.uk
http://www.mssociety.org.uk

MS Society Scotland
Ratho Park, 88 Glasgow Road, Ratho Station, Edinburgh EH28 8PP
0131 335 4050

MS Society Northern Ireland
34 Annadale Avenue, Belfast BT7 3JJ
028 9080 2802

NATIONAL FEDERATION OF MS THERAPY CENTRES
(England, Wales and Northern Ireland)
represents more than 70 self-help centres providing a wide range of drug-free symptom management therapies

155 Barkers Lane, Bedford MK41 9RX
01234 325781 info@ms-selfhelp.org
http://www.ms-selfhelp.org

SCOTTISH ASSOCIATION OF MS THERAPY CENTRES
scotinfo@mstherapycentres.org.uk
http://www.mstherapycentres.org.uk

MS RESOURCE CENTRE
provides support and information and publishes New Pathways magazine

7 Peartree Business Centre, Peartree Road, Stanway
Colchester, Essex CO3 5JN
0800 783 0518
http://www.msrc.co.uk

Other Useful Websites

JOOLY’S JOINT
an online community of people who live with MS
http://www.mswebpals.org

WORLD OF MS
website of the Multiple Sclerosis International Federation, with links to national societies around the world and news of developments in MS research
http://www.msif.org

ALL ABOUT MS
provides an extensive archive of news stories and medical information about MS from the perspective of someone who has the disease
http://www.mult-sclerosis.org

MS CROSSROADS
a wide ranging links page
http://www.mscrossroads.org

Other Useful Contacts

Benefits

BENEFITS ENQUIRY LINE
confidential advice and information for people with disabilities, and their carers and representatives, on the range of benefits available and how to claim them
0800 88 22 00

DISABILITY ALLIANCE
provides information and advice about entitlement to benefits and services

Universal House, 88-94 Wentworth Street, London E1 7SA
020 7247 8776
http://www.disabilityalliance.org

NATIONAL ASSOCIATION OF CITIZENS’ ADVICE BUREAUX (NACAB)
offers free, confidential, impartial and independent advice, including debt and consumer issues, benefits, housing, legal matters and employment rights

Myddelton House, 115-123 Pentonville Road, London N1 9LZ
http://www.nacab.org.uk

contact details of local CABs will be in the phone book

Getting Around

SHOPMOBILITY
a federation of more than 250 schemes providing scooters and wheelchairs for shoppers with mobility problems

The National Federation of Shopmobility UK
12 City Forum, 250 City Road, London EC1V 8AF
0207 689 1040
nfsuk@lineone.net
http://www.justmobility.co.uk/shop/

MOTABILITY
a national UK charity, which helps disabled people and their families to become more mobile

Goodman House Station Approach, Harlow, Essex CM20 2ET
01279 635666
http://www.motability.co.uk

MAVIS (Mobility Advice and Vehicle Information Service)
provides practical advice on driving, vehicle adaptation and suitable vehicle types for both drivers and passengers with disabilities

Macadam Avenue, Old Wokingham Road, Crowthorne, Berkshire RG45 6XD
01344 661000
mavis@dft.gsi.gov.uk
http://www.mobility-unit.dft.gov.uk/mavis/mavadv.htm

Equipment and Adaptations

DISABLED LIVING FOUNDATION
provides information on disability equipment, day-to-day household gadgets, new technologies and training techniques

380 - 384 Harrow Road, London W9 2HU
0845 130 9177
advice@dlf.org.uk
http://www.dlf.org.uk

DISABLED LIVING CENTRES COUNCIL
provide impartial information and advice about products and equipment for easier living through more than 40 local centres

Redbank House, 4 St Chads Street, Manchester M8 8QA
0161 834 1044
dlcc@dlcc.org.uk
http://www.dlcc.org.uk

REMAP
federation of volunteer organisations that provide custom made aids for people with disabilities
0845 130 0456
info@remap.org.uk
http://www.remap.org.uk

ABILITYNET
offers advice, support, assessment of needs, and the supply of adapted computer equipment, for people with any sort of disability

0800 269545
enquiries@abilitynet.org.uk
http://www.abilitynet.org.uk

CARE & REPAIR ENGLAND
aims to improve the housing and living conditions of people with disabilities

3rd Floor, Bridgford House, Pavilion Road, West Bridgford, Nottingham NG2 5GJ
0115 982 1527
Catrionasaxton@careandrepair-england.org.uk
http://www.careandrepair-england.org.uk

Care & Repair schemes exist elsewhere in the UK. Contact your local authority’s housing department for information

Disability Organisations

RADAR
supports local and national disability organisations, campaigns for improvements in disabled people’s lives and provides information to support independence and equality

12 City Forum, 250 City Road, London EC1V 8AF
020 7250 3222
radar@radar.org.uk
http://www.radar.org.uk

DIAL UK
network of 140 local disability information and advice services run by and for disabled people
St Catherine's, Tickhill Road, Doncaster, South Yorkshire DN4 8QN
01302 310 123
enquiries@dialuk.org.uk
http://www.dialuk.org.uk

DISABILITY, PREGNANCY & PARENTHOOD INTERNATIONAL
promotes better awareness and support for disabled people during pregnancy and as parents

National Centre for Disabled Parents, Unit F9, 89-93 Fonthill Road
London N4 3JH
0800 018 4730
info@dppi.org.uk
http://www.dppi.org.uk

Carers

PRINCESS ROYAL TRUST FOR CARERS
provides information, support and practical help to carers through more than 100 independently-managed Carers Centres

142 Minories, London EC3N 1LB
020 7480 7788
info@carers.org
http://www.carers.org

CROSSROADS ASSOCIATION
provides practical support to carers in the home and with respite care

10 Regent Place, Rugby, Warwickshire CV21 2PN
01788 573653
communications.crossroads@ukonline.co.uk
http://www.crossroads.org.uk

CARERS UK
provides information and advice to carers

20/25 Glasshouse Yard, London EC1A 4JT
020 7490 8818
info@ukcarers.org
http://www.carersonline.org.uk

Our thanks to everyone who submitted ideas and tips

The MS Trust would like to thank the Loughborough University Department of Information Science for their help in collecting the majority of these tips as part of the research they undertook to determine the information needs of people with MS.

The production of this booklet was generously supported by


© 2002 Multiple Sclerosis Trust