We realise that everyone is different and while some people want to read everything there is to read about MND others want to take it one day at a time. For this reason we have presented our factsheets in the following groups. That way people do not have to read the titles of some of the heavier going issues until they feel ready for them.
The factsheets are presented as PDFs that can be downloaded and printed.
This page contains a complete listing of all the factsheets we current have available (factsheet number in brackets after the title).
This group contains information about what causes MND and a little about the known genetics of MND.
- What is MND? [Factsheet 1 – 127kb PDF]
- What is MND? More Detailed [Factsheet 1B – 127kb PDF]
- Inherited MND [Factsheet 2 – 130kb PDF]
2. Coping with MND
A small collection of factsheets offering practical tools and advice for keeping track of appointments, coping with MND and talking to small children about MND.
- Coping with MND [Factsheet 27 – 260kb PDF]
- Telling Children About MND [Factsheet 29 – 258kb PDF]
- Tools to Help You [Factsheet 23 – 188kb PDF]
3. Information and Support
Where to go to find sources of support, more information about MND, the services offered by MND Scotland, recommended reading and a directory of useful organisations.
- About MND Scotland [Factsheet 32 – 95kb PDF]
- Sources of Support [Factsheet 31 – 171kb PDF]
- Library and Information Services [Factsheet 20 – 235kb PDF]
- Useful Organisations [Factsheet 43 – 243kb PDF]
- Recommended Reading [Factsheet 47 – 267kb PDF]
4. Caring and Carer
The implications of being a carer, advice on caring at home and sources of information about palliative care.
- Being a Carer [Factsheet 42 – 287kb PDF]
- Care at Home [Factsheet 15A – 275kb PDF]
- Palliative Care [Factsheet 15 – 241kb PDF]
5. Money Issues
A brief overview and description of current benefits you might be entitled to, a tool to help you manage your finances and some suggestions regarding financial and legal issues that might be relevant before you stop work..
- Financial and Legal Issues [Factsheet 38 – 252kb PDF]
- Benefits in Brief [Factsheet 4 – 116kb PDF]
- Bereavement Benefits [Factsheet 46 – 237kb PDF]
- Managing Your Money [Factsheet 49 – 515kb PDF]
- Spreadsheet to go with Factsheet 49 [316kb Excel file]
6. Managing Symptoms
Managing MND in general and why Riluzole is prescribed
- Managing MND [Factsheet 33 – 253kb PDF]
- Riluzole 2016 [Factsheet 22 – 174kb PDF]
7. Physical Disability
Suggestions on equipment, techniques, exercises and clothing to make life that little bit easier
- Assistive Equipment [Factsheet 5A – 402kb PDF]
- Maintaining Mobility [Factsheet 5B – 249kb PDF]
- Getting the Best From Physiotherapy [Factsheet 5C – 247kb PDF]
- Aids to Maintain Mobility [Factsheet 5D – 254kb PDF]
- Sex and Sexuality (in development) [Factsheet 19]
- Specialist Clothing [Factsheet 21 – 261kb PDF]
8. Research Drugs and Trials
What’s going on in the research front, how clinical trials are conducted and some information about complementary therapies.
- Current Research [Factsheet 26 – 290kb PDF]
- Clinical Trials [Factsheet 18 – 236kb PDF]
- Stem Cells [Factsheet 16 – 243kb PDF]
- Complementary Therapies [Factsheet 28 – 243kb PDF]
- Creatine [Factsheet 10 – 231kb PDF]
- Lithium and MND [Factsheet 39 – 138kb PDF]
Introducing genetics and disease inheritance in the context of MND.
- Introducing Genetics [Factsheet 3A – 239kb PDF]
- Disease Inheritance [Factsheet 3B – 153kb PDF]
10 Breathing and Bulbar Symptoms
Background information to the advantages and disadvantages of various interventions such as feeding tubes and non-invasive ventilation
- Adapting to Swallowing Problems [Factsheet 34 – 445kb PDF]
- Feeding Tubes [Factsheet 6 – 329kb PDF]
- Oral Health [Factsheet 36 – 242kb PDF]
- Breathing Matters [Factsheet 35 – 604kb PDF]
- Ventilation in MND [Factsheet 40 – 369kb PDF]
- Communication Strategies [Factsheet 30 – 1679kb PDF]
11. Motoring, Holidays & Travel
General advice and hints on motoring, motability, holidays, travel insurance and long distance travel.
- Travelling and Holidays [Factsheet 9 – 140kb PDF]
- Travel Insurance [Factsheet 12 – 249kb PDF]
- Motoring and MND [Factsheet 17 – 264kb PDF]
- Long Distance Travel [Factsheet 37 – 249kb PDF] – ABTA Checklist for Disabled and less mobile travellers [528 kb PDF]
12. Death, Dying and Bereavement
This collection may be helpful both for people considering powers of attorney, advance directives, leaving a legacy or medical bequest as well as those who need to deal with bereavement and other arrangements.
- Care Planning & End of Life Issues [Factsheet 8 – 262kb PDF]
- Leaving a Legacy [Factsheet 14 – 180kb PDF]
- Powers of Attorney [Factsheet 24 – 243kb PDF]
- Guardianship and Intervention Orders [Factsheet 25 – 236kb PDF]
- Advance Directives [Factsheet 44 – 247kb PDF]
- Medical Bequests [Factsheet 48 – 240kb PDF]
- After a Bereavement [Factsheet 45 – 157kb PDF]
- Coping after Bereavement [Factsheet 13 – 235kb PDF]
- Bereavement and Children [Factsheet 7 – 239kb PDF]
- Bereavement Benefits [Factsheet 46 – 237kb PDF]
The supplementary files contained here have the contact details for Scottish District Councils, Sheriff Courts and some suggestions for sample powers of attorney
- Sample Powers of Attorney [368kb PDF]
- Scottish Sheriff Court Contact Details [242kb PDF]
- Local Authority Contact Details [238kb PDF]
So what is MND anyway? A guide for younger people (teens) as to what MND is.
The following resources are intended for the use of professionals dealing with people affected by MND.
Mutidisciplinary Care Plan, contains suggested resources and interventions for different stages of MND.
A Problem Solving Approach 2012, is intended for medical practitioners and AHPs dealing with MND.
Amyotrophic Lateral Sclerosis, edited by Martin H Maurer, is an open access book intended for those with a more scientific interest in MND, 718 pages, published January 2012.
Advanced Understanding of Neurodegenerative Disease, edited by Raymond Chuen-Chung Chang, is an open access book intended for those with a more scientific interest in neurodegenerative diseases, 442 pages, published December 2011. Chapter ten on FTLD and the last chapter on ALS are of particular interest.