Caring & Motor Neurone Disease

What is Motor Neurone Disease?

Motor neurone disease, or MND, is an umbrella term for a group of conditions that affect people’s motor neurones (or nerves). These motor neurones are in the brain and spinal cord and have the job of telling different areas of the body what to do. When their function is disrupted, it causes issues with a person’s muscles and mobility. Over time as the nerves weaken and deteriorate, symptoms will worsen. While MND is terminal and there is not yet a cure, there are still many things that can be done to support those with the disease so that they can live the remainder of their lives to the fullest.

Common Signs of Motor Neurone Disease

  • Muscle aches/cramps
  • Weakness in limbs
  • Difficulty chewing or swallowing
  • Slurred speech
  • Cognitive change
  • Clumsiness
  • Weight loss
  • Emotional instability

Your Caring Role

Caring for someone who has MND can be challenging, especially your loved one’s condition worsens. It can be confusing and even frightening to see so many changes happen. Something that may help to ease your mind can be to work closely with your loved one’s care team. Having a good understanding of their condition and then working with their doctors, occupational therapists, etc. can help you be able to have a clear picture of what is going on. In addition to this, you may feel more able to identify changes in symptoms which would then allow you to be more apt to report these changes to professionals to get your loved one the necessary help. This will also help you to understand what you need to do as a carer to help your loved one in the best way that you can.

There surely is a great emotional impact that caring for someone with MND can have. It is important to be open and honest with your emotions. Talking with your loved one about their condition and what they are going through can be extremely helpful. Chances are that they are experiencing similar emotions because of what they are going through. In some cases, it may also be beneficial to talk to someone else. Having a support system and people you can turn to is important. Be sure to take time to connect with friends, family, and even other carers! Check out our groups and activities pages to find out about ways you can connect with other carers in your area.

Caring for someone with MND is no easy task. With all of the appointments, changes, adjustments, and responsibilities you must attend to, you may start to feel overwhelmed. Becoming exhausted can begin to impact your caring role, as well as other areas of your life. It is important to take care of yourself as well amidst all of the other things. When you become aware of these feelings, try your best to take steps to practice self-care. Making an effort to attend your own appointments and have some alone time each day can be very impactful!

Need more support?

If you are caring for someone who has MND and think that you may need a little bit of extra support, Suffolk Carers Matter would be happy to help! We offer free support, advice, and guidance and even have a free counselling service available should you need it!

CALL us on 01284 333035 – open Monday-Friday 8am-8pm and Saturday-Sunday 10am-2pm.

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Click here to REGISTER with Suffolk Carers Matter.

EMAIL us via our contact form here and we will get back to you.