Living with MND
We know a diagnosis of motor neuron disease (MND) can turn your world upside down and present you and your family with many challenges.
To help you live the best possible life with MND, this page covers our essential advice, how to manage day-to-day issues and what may improve your quality of life.
Supporting someone living with MND?
If you’re caring for someone with MND, we can offer you a wide range of helpful information and support. We want you to know you’re not alone and that our expert services can ease your worries and help you look after yourself.
All our services for people living with MND
As well as reading the advice on this page, please visit our services section. It provides a summary of all the ways we can help you understand your illness better, prepare you for the future and improve your quality of life.
Since we were founded over 40 years ago, we’ve listened to, supported and worked with thousands of people living with MND. Through this experience, we’ve identified some key pieces of advice below that we think will benefit anyone diagnosed with motor neuron disease.
Reach out for support
Being diagnosed with MND can be overwhelming. You may experience a range of difficult emotions and feel isolated and lonely.
These feelings may be something you struggle to talk to your family and friends about. But the good news is you can reach out and speak to other people who understand what you’re going through.
You can speak to your MND clinical nurse specialist. They can provide you with emotional and practical support and help with a wide range of other issues.
MND Scotland is also here to provide a listening ear and give you the support you need. You can contact us on 0141 332 3903 (9am to 5pm, Mon to Fri) or email@example.com. We’ll do our best to answer your calls and reply to emails promptly. But if your call does go to our answer machine, please leave a message. We regularly check for messages and will return your call as soon as possible.
You can also join our Online Peer Support Groups where you can talk openly with other people living with MND.
You can apply to use our free Counselling Service. This gives you access to one-to-one sessions with a qualified therapist.
On top of this, your care needs should be assessed by a care professional from your local council’s social care department. This assessment will also identify how these needs can be met.
To find out more about a care assessment and how to request one, please speak to your MND clinical nurse specialist, MND Scotland or your local council directly.
Alternatively, you could ask your carer or another member of your care team to request a care assessment for you.
Motor neuron disease can be an unpredictable illness. Planning for the future can be hard to think about. But doing this may help you and your family feel more in control and cope better with the changes MND may bring.
Look after yourself
MND can affect your physical and mental health in many different ways. So, it’s important you access support that will help to keep you safe and give your wellbeing a boost.
Be open about your diagnosis
Whether you tell people about your diagnosis is a personal choice, and what you choose to do must feel right for you and your situation. But being open about MND may help you feel less alone, supported by your loved ones and more in control of your situation.
Letting family and friends know about your diagnosis can also help them understand how you’re feeling, provide helpful support and prepare for the future.
You may also find it helpful in the long run to tell children and young people in your family about your diagnosis. This is because children often know when something serious is affecting someone they’re close to.
By explaining what’s happening, you can help them feel less vulnerable; and it gives them a chance to talk openly about their fears and worries.
We’re in your corner
Motor neuron disease may put a range of practical issues in front of you that you find difficult and frustrating. These may include problems securing adaptations to your home or finding a care provider.
If you do experience issues you or your family start to struggle with, please don’t hesitate to speak to us.
Every day you may face physical, emotional and practical challenges because of MND. But please remember you’re not alone. You can access a wide range of information and support to help you manage and overcome these challenges.
Coping with your diagnosis
After your diagnosis, you’re likely to feel anxious about how you’ll cope with living with MND every day. If you’re feeling this way, please read our advice on coping. It may help to make this very stressful time easier.
Because of your MND, you may experience a range of physical and emotional symptoms. If you are affected in any way and need help, please remember you can always contact your MND clinical nurse specialist, GP or another member of your care team.
Alternatively, you can contact MND Scotland on 0141 332 3903 or email firstname.lastname@example.org. We can then talk through your symptoms and tell you about possible ways they could be managed, for example, through physiotherapy or the use of specialist equipment.
Possible physical and emotional symptoms of MND:
Joint and muscle pain
Leg and foot swelling
Poor posture and neck control
Sleep and positional problems
Changes to sex life
Eating and drinking problems
Mucus and excessive saliva
Personality and behavioural changes
Taking care of money
A diagnosis of MND can significantly reduce a household’s income and result in rising costs. This can often lead to people living with MND and their family members having daily worries about paying their mortgage and household bills and covering many other costs.
To help ease your money worries, we provide a free Welfare and Benefits Advice Service. It can offer you expert guidance and help you claim the benefits and other financial support you’re entitled to.
We also offer a range of grants to assist with various aspects of living with MND, such as home adaptations, taking a break and accessing services that can boost your wellbeing.
Quality of life
Motor neuron disease can have a major impact on a person’s quality of life. But there are many things you can do to feel comfortable, remain independent and keep enjoying life.
MND may affect how you do things and get around. But there is a wide range of support available that can help you remain independent.
Travel and holidays
Taking a break and getting away from your day-to-day routine is something you and your family may find hugely beneficial. To help you do this in a safe and relaxing way, we offer people living with MND and their carers access to two Scottish holiday homes for free.
You can find out more about these great destinations on our Holiday in comfort page. This page also features links to other organisations that specialise in accessible holiday accommodation.
On top of this, we may be able to offer you a grant to fully, or partly, pay for a short trip away or longer holiday.
Sex and intimacy
Intimacy and sexuality are important to quality of life and emotional wellbeing, and we know they remain important to people living with MND their partners, regardless of age and level of disability. Although MND does not affect sexual function, physical changes can affect sexual expression and the way a person with MND feels.
Close physical contact, touch and time together often becomes more important as a person’s condition deteriorates but it is very individual how diagnosis impacts the importance placed on a couple’s intimate lives.
If you have questions or concerns around these aspects of your life please speak to your MND clinical nurse specialist.
Treats for yourself
Making time for things that make you feel happy or fulfilled could be incredibly important to your quality of life. So, try to treat yourself, now and again. This might involve you going out for dinner, having a massage or doing a hobby you enjoy.
To help you treat yourself, we may be able to offer you a grant to spend on therapies and services that help you relax and feel good, or to spend quality time with family or friends, pursue a hobby or do something else that helps you switch off and forget your worries.
Support for people living with MND
Learn more about all the support and services we offer to help people living with MND understand their illness, prepare for the future and have a good quality of life.
Support for carers
If you care for someone living with MND, we are here to support you too. Find out more about our free wellbeing, practical and financial services.
Other sources of support
Locally and nationally, there are many organisations that can provide you with helpful information and support, including your local authority, hospices and charities.
Below, we have listed some of these organisations for you. But also feel free to contact us on 0141 332 3903 or email@example.com if you’re seeking more specific support. We’ll do our best to provide you with answers or point you in the right direction for further help.
You can also contact us to find out about the many discount schemes and concessions you may entitled to because of your diagnosis. These include discounted rail and bus travel, discounted cinema passes and reduced entry fees to many visitor attractions.
Quality information on all aspects of care services for people living in Scotland.
Useful for locating care providers such as care homes and care-at-home services.
Useful for locating care providers such as care homes and care-at-home services.
Reviews on the accessibility of different venues, such as hotels, restaurants and theatres.
Expert information to help you make informed decisions about your health and care.
Information, support and advocacy for people who require artificial nutrition at home.
Directory of accessible short breaks and accommodation, as well as other helpful resources.
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