• 2nd Jan, 17 •
Motor neurone disease (MND) is a progressive disease that attacks the motor neurones, or nerves, in the brain and spinal cord. This means messages gradually stop reaching muscles, which leads to weakness and wasting.
MND can affect how you walk, talk, eat, drink and breathe. However, not all symptoms necessarily happen to everyone and it is unlikely they will all develop at the same time, or in any specific order.
Although there is currently no cure for MND, symptoms can be managed to help you achieve the best possible quality of life.
A diagnosis of MND can feel overwhelming. You, your family and everyone close to you may need time to adjust. As difficult as it may feel at first, having conversations together about the impact of this news can be helpful. It may make it easier for everyone to share their individual concerns, both now and in the future. Family counselling can support these difficult conversations and overwhelming feelings. Contacting a counsellor can support you and your family , the counsellor will facilitate the process and ensure that there is clarity for all without any misunderstandings. Misunderstandings are common when people are faced with traumatic circumstances, people tend to let the shock of the new situation speak out loud in ways that they would not normally speak , sometimes things are said without thinking because the impact of loss feels so overwhelming. For others things are left unsaid in fear of saying the wrong thing and causing upset.
If you are someone suffering from MND, or a spouse, family member you may find it difficult to have open conversations together, your feelings, thoughts and fears may become hidden inside in order to protect those around you. Not all families will become closer to one another when they are faced with such traumatic changes to their lives, although families may want the support of each other, strong emotions rise to the surface and can take us by surprise. During these times the support of close friends is very important, friends can help by offering the "gift of time", time to be together face to face can help normalise things and keep a clear perspective on reality. Friends can help by being by your side. As we move into a world of technology it can be easy to text messages or communicate through social media, this has become a way of life for so many people, however it is important not to lose sight of the importance of real genuine face to face company with another. Social media and text messaging does have its place but it doesn’t replace face to face time, being beside someone at a difficult time, the ability to offer eye contact to each other which is critical to intimate emotional connection. MND does not affect the muscles in the eyes and it does not affect touch, for those suffering with MND eye contact and the touch of someones hand can send a strong message at a lonely hour that says “I’m here for you and I care”.
Further information about symptoms, and the affects of everyday life can be obtained from the MNDA website motor neurones disease association.
MND will not affect:
- Taste, sight, smell, touch, hearing
- Sexual function and expression
- Eye muscles
- Heart muscles
Talking to a counsellor who understands about MND can help the person diagnosed, their families and friends by providing a safe place to talk openly, a place where strong emotions can be openly expressed and released without the fear of upsetting those close to you.
If you are the main carer of someone living with MND it is important that you take good care of yourself, self care is important when caring for another, good restful sleep, time with friends and the acceptance of professional support can give you time to enjoy things without feeling guilty. Individual time strengthens relationships, it leaves you feeling refreshed and recharged, able to face another day and care for your loved one once again. Talking to a counsellor can be of great benefit if you are the main carer, it will provide you with an opportunity to talk about your fears and anxieties in confidence and gain the emotional support that you need as you adapt to new challenging circumstances.
MND can affect speech and this can be frustratingfor both the listener and the receiver as both people desparately want to communicate with one another, finding a language together that both can understand can support you, sometimes this may involve using the aid of visual communication cards to support the person with MND if needed or using a voice activator through your computer . A counsellor experienced in working with MND will not see speech as a barrier to communication but will indeed support you, listen patiently to you and offer you the time and space that you need to help you feel heard and understood. Counselling is time for you to express your thoughts and feelings in confidence, to help you adjust to your losses and to be able to face the challenges of living with MND.
Emotional impact (Extracted from no4 MNDA publication : full sheet available from MNDA website)
Every individual is diﬀerent and feelings and emotions will be influenced by your own particular circumstances, culture and beliefs. Whatever responses you feel in the weeks and months following diagnosis, it is important to remember these reactions are natural and shared by many. You are not alone. There is help and support available. Reactions For most people, following a diagnosis of MND comes as a shock. However, for some there can also be a sense of relief after a period of great uncertainty. Once you know what is happening, you can take action to make life as comfortable as possible. Yet, as you begin to deal with the diagnosis and what it will mean, the range of emotional responses can feel very confusing. It is not uncommon to feel mixed emotions, as you can experience more than one distinct feeling at a time, such as anger and guilt. You may experience: • shock • fear for the future • disbelief at the diagnosis, and denial • anxiety for family, children and friends • grief for the loss of the future you expected • anger at the medical profession or family and friends • isolation because you suddenly feel diﬀerent from others • intense sadness • guilt that you may be the cause of stress for others • relief that you finally know what is happening to you.
Feeling overwhelmed, some or all of these reactions may feel overwhelming for a while and you need to work through them at your own pace. You may need to get the situation straight in your own mind before seeking support or information. Gradually though, you may wish to review your life and plans. One of the most diﬃcult things at this time is to get a balance between keeping a positive mental attitude and accepting that you have a life-shortening illness. You may feel determined to face the disease head on and fight it, or you may prefer to deal with it one day at a time.
Discussing and acknowledging feelings with those close to you is vital. MND aﬀects them too and sharing highs and lows means you can all support each other. They may even wish to access information on the disease and support services before you feel ready to do so. They will have personal questions about what is happening and seeking information can help them to adjust.
If you have been diagnosed with MND you may find you tend to laugh or cry at unexpected times. This can be diﬃcult to stop and you may feel out of control, which is often distressing for yourself, but also for those close to you, who may not understand. This is called emotional lability (also known as pseudo-bulbar eﬀect) and is a symptom of MND, though it is not necessarily experienced by everyone with the disease.
It is an abnormal motor response caused by the eﬀects of MND on the pathway between the outer layer of the brain and the brain stem. This means your responses may not match how you feel. For example, you may laugh uncontrollably, but feel sad, or you may cry, but feel happy. In many cases this is a temporary symptom that reduces over time, but if the responses are persistent and causing distress it is recommended that you talk to your GP. If your GP is not familiar with emotional lability, you can talk to an experienced counsellor or an appropriate member of your health and social care team with experience of neurological conditions. You may find that understanding the symptom is enough to help you and your family to manage the impact.
Others find emotional lability limits where they go and what they do, and that medication or other assistance helps. Some people with MND experience changes to thinking and behaviour (called cognitive change). In these instances, it is more common to experience emotional lability. However, it is very important to be aware that emotional lability is not in itself a sign of other changes to thinking and behaviour.
Depression With any serious illness, it is quite normal to experience low moods at times.
If you find it particularly diﬃcult to recover from feeling low, it may be time to seek some help. Try to be aware of signs such as:
- diﬃculty sleeping
- loss of interest
- loss of appetite
- lack of energy.
Bear in mind that there could be other underlying causes for these eﬀects which may be due to physical symptoms rather than depression. Whatever the cause, if they persist or feel overwhelming, you can seek help. There is no reason why you should have to go through them alone and there are eﬀective treatments available. Speak to a counsellor or your health and social care team for guidance.
“ It is easy for the person with MND to withdraw and for the carer to be preoccupied with caring. It is important to take time to remember to show the other that you still care. “ It really can’t be emphasised enough to listen to professionals who have helped people go through this before
Staying in control: • means trying to keep involved in the world around you, as MND can feel very isolating • means giving yourself permission to laugh when needed, as humour can help to defuse those diﬃcult moments • is about planning ahead to ensure support is already in place when you need it • means being aware of your future needs, while managing the disease one day at a time.
Emotional support and guidance For professional guidance it is recommended that you talk to your GP , and your health and social care team. They can oﬀer a range of assistance, from how to manage diﬃcult emotions, to medication for specific symptoms. If you are feeling particularly overwhelmed you can talk to an counsellor experienced in supporting MND by contacting the number or email address on this website. Home visits can be arranged.
Are you experiencing any of the following?
- Relationship difficulties
- Communication problems
- Separation or divorce
- Sadness, hurt or anger
- Frustration, confusion or despair
- Stress, anxiety or depression
- Mood changes
- A change of family situation or life stage
- A feeling of rejection
- Difficulties living with chronic pain, critical illness or disability
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