Motor Neurone Disease Harmony Healthcare January 29, 2022

Motor neurone disease

Helping our clients live a fulfilling life with motor neurone disease
Motor neurone disease is a devastating illness that can affect anyone, at any age. It is relatively rare, and it usually affects older age groups from 60 and older, although it can affect anyone at any age. The disease affects the brain and nerves, and it tends to worsen over time. The cause of it is cells in the brain failing to work over a period of time. These are called motor neurones. There is no known reason why some people develop this disease, but it is not thought to be genetic. Unfortunately, it also shortens lifespan and it will eventually lead to death. The severity depends on the individual, but it is progressive. Since the symptoms of motor neurone disease can start early, and may not be noticeable enough to cause concern, it has the potential to be undiagnosed for some time. Some of the most common symptoms of motor neurone disease are weaknesses in the leg, which can cause the sufferer to be unable to climb stairs or at least, find these movements difficult. It might be difficult to grip even the simplest of things, such as jars and sufferers can become frustrated when they can’t do day to day activities. It is usual for those with motor neurone disease to lose weight quickly and they may feel heightened emotions. Twitching and muscle cramps are also common, and in most cases, slurred speech of the inability to speak are a common part of the illness.
There is no specific timeframe from diagnosis to death. In some cases, the sufferer of motor neurone disease will live with the illness for decades, while others will be years. The disease progresses differently in different people but it is common for swallowing and breathing to eventually become difficult to do.
Caring for our clients with motor neurone disease
We will provide you or your loved one with a specialised care treatment plan based on the individual needs and the carers we supply will always be trained on motor neurone disease, and understand the progression of the disease. It is an unpredictable disease, and we ensure our carers are able to deal with the changes that may occur. We will ensure your level of care is tailored dependent on the progression. We always ensure our clients are dealt with sensitively, and patiently. We know that living an independent life is important, and we will always focus on this when developing a suitable plan. We always aim to help you retain as much independence as possible, based on the severity of our condition.

In many cases, palliative care  will be necessary for those with motor neurone disease. We can provide this care in the comfort of your home, providing carers and our experienced registered nurses to help manage respiratory problems, and ensure you or your loved one stays as comfortable as possible as the condition develops. Our carers are highly knowledgeable about motor neurone disease, and they also understand it can be a frightening experience. As well as the clinical side, they will also provide emotional support, as and when it is required. We will also offer support to family members on how to comfort their loved one and deal with their own emotions.

These are some of the day to day aspects our carers will help with for you or your loved one suffering from motor neurone disease:
  • Ensuring that a healthy breakfast is prepared, and helping support feeding, dressing and personal care.
  • Our carers will support any activities you wish to do, including walking and visiting friends. We always try to ensure our clients live as independently as possible, and we will actively encourage you to take part in the activities you enjoy, as well as trying others.
  •  The carers will also deal with day to day practical tasks that might be impossible to do, such as housework and shopping.
  • Administering medication may also be required, ensuring that the patient takes the correct amount.
  • Preparing healthy meals
  • Respite care can be arranged if support is needed on a temporary basis to give family members a break.
Case study for client with motor neurone disease

Simon is 80 years’ old and lives with his wife. He has motor neurone disease and his wife looks after him. We were contacted by the family to ask us to provide some respite and overnight care  to give his wife, Margaret, a bit of a break. The carer we provided was experience in dealing with motor neurone disease, and was patient and understanding when Simon struggled with communication, and often found himself getting frustrated. The carer spent time playing dominoes and cards with Simon, something he loves doing (and his wife doesn’t!) Simon is confined to a wheelchair, but the carer still ensured he was taken out to cafes and for lunch as much as possible, as this is something else that gives him great joy. The carer also provides personal care to Simon, as well as feeding at times when he struggles. The carer has been a life saver to Margaret, who works hard to care for Simon and sometimes just needs some time to rest and recuperate. She often takes herself off on holiday during the respite with friends, and returns reinvigorated and able to provide the love and care Simon needs. Simon loves spending time with the carer, and feels like it takes a lot of pressure off is relationship.

 
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