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How To Care For Someone With Motor-Neuron Disease

by Melanie Peterson

Understanding MND

MND stands for Motor Neuron Disease which is the name given to the group of diseases in which the nerve cells called motor neurons in the brain stem, nervous system and spinal cord lead to muscle degeneration. In doing so this affects the muscles that enable us to move, speak, breathe and swallow.

Motor neurone disease, also known as amyotrophic lateral sclerosis (ALS) and it affects everyone differently and symptoms will vary in severity. Early symptoms may show but progress at different speeds in people making the progression of the disease hard to predict for those caring for someone living with MND. Effective management of symptoms means that people are able to live a good quality of life, with care and support tailored to their needs.

How To Care For Someone With Motor-Neuron Disease

Symptoms of motor-neuron disease

  • Muscle weakness / muscle wasting / muscle cramps / muscle stiffness / muscle twitching
  • Stiff joints affecting mobility and movement
  • Emotional lability
  • Behaviour changes – some people develop frontotemporal dementia, Alzheimer’s disease and Parkinson’s disease
  • Weight loss
  • Breathing problems
  • Fatigue
  • Swallowing and saliva problems affecting how you eat and drink
  • Problems with speech and communication

How to support someone with motor-neuron disease

It can be a shock for the whole family when your loved one is diagnosed with MND, and can quickly lead to feelings of isolation, helplessness and hopelessness for both the individual and relatives. To help support someone with MND, Tiacare, health care specialists in the UK, advise you to plan each week ahead to give yourself time and family members to prepare and pace out the activity so it won’t cause any further stress or fatigue. Here are a few examples of how to prepare to spend time with your loved one.

MND & Sleep

People with MND often struggle with sleep due to symptoms of joint pain, excess saliva, and difficulty breathing, on top of the general stress of their diagnosis. We advise when caring for a loved one to assist in moving them into more comfortable positions, and to give reassuring conversations to promote relaxation avoiding any further stress.

MND & Fatigue

Fatigue is a common symptom of MND, that’s why we recommend planning your favourite activities in advance, making sure there’s a healthy routine established both inside, outside the house doing activities you both enjoy even if it may be just spending quality time together.

MND And Food

Because difficulty swallowing is a common symptom of MND, it’s crucial to modify food intake and swallowing techniques in order to prevent choking hazards. We recommend puréed (vitamised or blended) foods that are smooth, moist and free from lumps, and therefore easier to swallow. However, we do advise you to make sure your loved one has a good relationship with food so try to serve them foods they love and will want to keep eating that is vibrant and this will maintain energy levels and improve the mood of your loved one.

Speech and Communication

We recommend trying to seek a speech and language therapist who has experience working with MND to help with communication issues. As Speech starts to deteriorate it will become increasingly difficult for both parties to communicate with each other causing pressure on both sides to talk resulting in additional stress that can be avoided.

MND & Equipment

Mobility, communication and respiratory support devices are just some of the types of equipment that can help MND sufferers. It can enable them to be more easily cared for and to stay more connected with their families and communities to discover some great personal care products visit the Tiacare website here.

MND can affect day to day life but planning ahead and making sure your loved one has everything they need to maintain a great quality of life will certainly put your minds at ease if you have any further queries or questions please don’t hesitate to ask.

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