A Nurse’s Perspective

The past year has seen a lot of changes in our lives, but one service has remained steady and constant during all the chaos. Our Nursing Service.

Here, one of our fab four, Eithne Cawley speaks about nursing during the pandemic and the importance of our Sponsored Silence Campaign #Voice4MND.

She explores the symptoms and emotions associated with speech loss and how our services can help.

My name is Eithne Cawley, I am a MND Nurse Specialist and I have been working with the Irish Motor Neurone Disease Association (IMNDA) for over a decade now.

My background is within the area of neurology, my nursing training began in Beaumont Hospital working alongside experts within the area of MND and this is where my interest began.

There are currently four MND Nurses covering the Republic of Ireland. We travel across the length and breathe of the country providing support for people and their families living with MND. We also attend specialist MND clinics in Dublin, Galway, Limerick and Cork.

I am the link in the provision of care from diagnosis. I am almost like a conduit between the hospital and community. Follow up in the community is imperative, I have to prioritise and organise home visits for each person living with MND as determined by both their clinical and psychosocial needs.

As a MND nurse, we are there every step of the way. MND can often be a journey of losses and it is imperative that correct information and services are provided in a timely manner.

Being a nurse that specialises in MND means that I not only play an active role in the person living with disease and their family’s lives, but I also play an active role with health care professional education to ensure best standard and practice of care is delivered to our families at all times.

It is imperative to keep abreast and up to date with best practise and research developments within the area of MND care.

The nursing service is active in its total approach to care. Embracing physical, social and spiritual elements. It focuses on enhancement of quality of life for the person diagnosed and support for the family and includes the management of distressing symptoms and the provision of support and care throughout the journey of MND.

I work very closely with many members of the multidisciplinary team (MDT). These include Consultant Neurologists, Occupational Therapists (OT), Public Health Nurses (PHN), Physiotherapists (PT), Speech & Language Therapists (SLT), Dieticians, Medical Social Workers (MSW), Palliative care workers and General Practitioners (GP). I endeavour to co-ordinate a service that provides continuity of care for all our MND community in collaboration with local health care professional, especially those with specialist needs including symptom management, this applies to both hospital and community care settings.

March 2020, and who knew what was ahead for us all? Everything changed for everybody. From a nursing perspective and indeed all members of the multidisciplinary team, the country and world changed as we knew it.

Words unheard of – Covid, Pandemic, Virus, Zoom, PPE, Social distancing, Lockdown, to name but a few. Watching daily numbers and figures rise as we faced the absolute unknown and uncertainty. How frightening was this for all our families not to mention our MND families. Ranked amongst the most vulnerable in our society.

As an interdisciplinary team, we very quickly developed a plan, working alongside Professor Hardiman, Consultant Neurologist at Beaumont Hospital, Clinical Lead in MND, together with other expert centres at Cork and Galway. Video calls were quickly established. New policy and protocols were adopted. We had to rapidly change how we implemented our work strategy and the way we practiced. A challenge for many but like everything else in life, we all became more resilient to this ever-evolving crisis. We now have a 24/7 on call service, it was vital nobody felt abandoned and people were supported at all times.

This really brings me to the IMNDA National Sponsored Silence Campaign #Voice4MND, where we implore people to ‘Lose your voice so others can be heard’. Long before Corona virus, people living with MND have had to make many changes in relation to communication and technology so one can only imagine the challenges and difficulties experienced. We could describe many of our service users as not being the most tech savvy and so had to adapt and learn these technologies prior to Covid 19. It really is a completely new world but many embrace so graciously and with genuine enthusiasm.

We now know from evidence based research that approximately 80% of people living with MND will experience some sort of speech difficulty, medically known as ‘dysarthria’, this means the muscles responsible for speaking are damaged, paralysed or become very weak, the person with dysarthria cannot control their tongue or voice box and may slur words.

Approximately one third of people with MND experience bulbar motor neurone disease, a particularly aggressive form affecting speech and swallow muscles in the disease process.

Speech can deteriorate over a period of months and is often stated by people living with MND as one of the most difficult of symptoms.

We are all familiar with the absolute importance of human to human interaction, which shifted dramatically from face to face interaction to a virtual one after the onset of the Covid 19 pandemic. As mentioned virtual communication, including telephone communication and videoconferences became the mainstream virtual interaction method.

One can only imagine how isolating loss of speech or difficulty speaking can be for somebody with MND, many experience negative feelings such as frustration, anger, anxiety, low self-esteem and depression. Such feelings are not limited to those with severe speech and language problems, people with milder problems feel the emotional impact as well.

Very often telephone and video calls are not an option for someone living with MND. Family members will often report difficulties around language, word selection and sentence formation; this can affect the meaning of what is said.

Body language, reduced head movements and hand /arm gestures can affect conversations and impact people talking. Speech, articulation, resonance and pronunciation can lead to indistinct, slurred words with a possible nasal quality. Often intonation and the melody of speech can become distorted which can lead to a loudness or low pitch, the voice itself can become harsh or ‘strangled’, and sometimes voice quality is described as sounding ‘wet’.

To speak normally is a complicated process. One we very often take for granted. It relies on many parts of the brain working cooperatively together, involving language comprehension, processing and motor coordination of muscle groups governed by different parts of the motor cortex. Speech formation and comprehension are primarily controlled by the frontal and temporal part of our brain.

The frontal lobe is responsible for converting thoughts and ideas into spoken words and the temporal lobe is primarily responsible for understanding and processing speech, any damage to this complicated process will result in the various forms of speech disturbance including nerve or neurone damage. There is an association between early augmentative and alternative communication (AAC) intervention for people living with MND and higher quality of life for people and importantly carers and loved ones.

A deterioration in intelligibility does not correlate with a perceived deterioration in social interaction. Respiratory weakness can also have an impact on communication, patients are often simply too tired to talk. Fatigue is a significant symptom of MND and this can cause an individual’s speech to deteriorate as the day progresses. Eating, drinking and swallow can also be affected.

Speech loss can dramatically effect a person’s enjoyment of social occasions, which often involves mealtimes and drinks. Drooling is also a common symptom in people with MND due to difficulties in managing saliva.

Speech and Language therapists play an integral part of the multidisciplinary team, in supporting people experiencing difficulty with speech, promoting better quality of life for both the person with MND and their loved ones. The SLT supports people with any changes in speech and communication, including the use of a wide range of assistive technologies to support or replace spoken communication. They also help people prepare for and support the potential transition to, augmentative and alternative communication (AAC). This may include anticipatory voice or message banking.

AAC involves a wide range of technologies to support or replace spoken communication, including: writing, gestures, signing, symbols, and pictures, communication boards, tablets and computers. How people access these systems physically is an important consideration (for example, via switches or using eye gaze technology).

Thankfully, the IMNDA, along with myself and the speech & language therapist together with Central Remedial Clinic (CRC), can assist with funding specialised equipment as recommended for our MND Community. Devices such as IPads and eyegaze technology can really alleviate stress when it comes to speaking, and can give someone back their voice and their ability to take part in everyday communication.

Some people with MND and their families hesitate to seek or accept help and advice. Asking ‘what is the point’ if there is no cure for MND, but there is so much that can be done to overcome and manage what seems the worst possible diagnosis. There is an abundance of help. The IMNDA is solely dedicated to working on behalf of supporting people living with MND and their families.

The IMNDA provides specialised services for people affected by this debilitating disease such as equipment on loan, financial assistance towards home help, advice and home visits by MND Nurse.

I am in a very privileged position to work in such a supportive organisation. I am utterly useless on my own, so working as part of a team is vital, it is all about teamwork. The IMNDA works tirelessly and effortlessly in relation to providing support services. Nevertheless, we also must endeavour to create awareness of the disease and ensure, like all other voluntary organisations, that we still have enough funds coming in to keep the IMNDA afloat.

We rely heavily on funding and fundraising, 80% of our funding comes from the people of this country, in the absence of this we simply would not exist. Above all, it is all about providing support to our MND Community. Over €113,000 was spent last year on communication aids alone and this is another reason why our Sponsored Silence #Vocie4MND is so pivotal. Not only does it try and demonstrate the experience of someone living with MND but it also brings in funds to support them.

I am humbled every single day by people living with MND, not to mention living with this during a pandemic, sometimes in the depths of despair and in the darkest corner, a light seems to shine.

It would be remiss of me to say ‘if I had a diagnosis of MND me how would I feel?’ The honest answer is I don’t know and I often wonder.  A person living with MND said to me some time ago ‘There is no use in trying to describe it, you have to feel it to understand it, everyone in my family feels they received a diagnosis of MND now’ a very descriptive humble honest view and I believe that says it all.

If you have any questions on anything spoken about in this article, please contact us on Freephone 1800403403 or email services@imnda.ie . If you would like to get involved in the Sponsored Silence #Voice4MND please visit our website imnda.ie for more.