Until there's a cure ... there's care

Laura Morrison, Speech Pathologist

JOURNAL of a Speech Pathologist living in London, working as a Speech and Language Therapist (SALT), written on 10th June 2017 by Laura Morrison

**Please be aware that this a true story of the challenges someone may face if diagnosed with Motor Neurone Disease. It is a confronting and sad recount, however I hope that with this story awareness is raised as to the importance of the Speech Pathology profession and the need for further funding to support finding a cure for MND.**

I can talk, I can walk, I can swallow, I can read, I can write, I can itch my head if I need to, I can laugh when I want to. I can wipe my own tears. You're thinking, what's the big deal? So can I.

Not all of us are so fortunate. Today I met a lady who struggles to do all of these things.

Ms. S is an ancient history and Greek language secondary college teacher. At the age of 43 she has been told that it is an Occupational Health and Safety risk for the other staff and students for her to work. Sure the other teachers have to push her in a wheelchair between classes, because she can no longer walk, and her students now sit close to hear her now weak voice. But, Ms. S has full cognitive ability and I can guarantee, her students listen to her with more attention than they do any other teacher. This is because while Ms. S’s speech is slurred and quiet, at this point, each word is highly valued and precious.

Today I had to be the person to explain to Ms. S that it may not be long until she can no longer speak…at all. That is, her lung capacity may reduce to a point where she does not have enough expiration force to drive her vocal folds and produce voice and loudness on top of the diminishing nerve function required for voicing and speech. While there are amazing technologies which can record and save your voice to create synthetic speech to allow a computer to speak on your behalf (like Stephen Hawking), Ms. S is now faced with the grief of losing yet another function; the ability to speak.

A voice amplifier is currently helping her to increase the loudness of her voice. While I sit and talk with Ms. S the microphone headset begins to slide down her head and on to her forehead. I watch and wait for an indication as to if she would like my help because I know that her independence is slipping through her now very weak hands and my priority is to empower her. She looks at me and asks that I help because she can no longer lift her hand to move the headset back on her head. As it turns out, I managed to help her realise that she can still do this using her hand in an atypical way.

We are interrupted by a phone call from the Occupational Therapist (OT) who arranges her care. Concerns were raised by the Physiotherapist who visited yesterday as there has been further deterioration in Ms. S's mobility and she can no longer transfer in to bed with 1 carer, she requires 2. The service is strapped and they can't send 2 carers at her already early bedtime of 7, and today Ms. S will be helped to bed at 4 o'clock. She says ‘My students won’t even be home from school yet, and I’ll be put to bed’. The OT adds that she'll bring a pad because she'll be in bed so long without a way to reach the toilet that a pad may be required.

Ms. S finishes the phone call, looks at me and bursts in to tears.

Her diagnosis of Motor Neurone Disease (MND) was confirmed last month with a life expectancy of 1 year given.

All she wants is to be able to sit in her recliner chair by the window to watch her cat and the birds who feed in the bird house she once made. She can't do this today because when the carers come they'll close the curtains and put her to bed with the light off to prevent her from sleeping the night with the light on and waking at sunrise. With nothing to do but stare at the ceiling she tells me she spends most of her nights thinking...about MND.

I console her as much as I can. She eventually stops crying, looks at me, and asks that I wipe away her tears because she no longer can.

Ms. S goes on to say that she is really hungry. Her carer hadn't been since lunch and it was now 4pm. She has no way of getting any food for herself so she has resigned to having a box of chocolates next to her chair not because she is being over indulgent, but because they don't have a packet (so she can easily place in her mouth even with her limited hand function) and because she can manage to swallow chocolate.

Her swallow has started to deteriorate. Ms. S says she is coughing more often. Just yesterday she was drinking a glass of water and her sister made her laugh (she smiled as she told me), but then she started coughing and lost her breath taking a few minutes to recover. Ms. S looked at me and asked, 'Is my swallow going because of MND?'

As a Speech and Language Therapist you get asked difficult questions all the time, and there is never really a right way of answering. With no way around it, I said 'Yes, your swallow is deteriorating because of MND'. I explained that it's typical of MND that your swallow will start to deteriorate around a similar time that your speech does due to the nerves and muscles that are involved; otherwise known as ‘Bulbar’ symptoms.

Ms. S has been grappling with the loss of her mobility (walking with a frame inside and using a wheelchair outside), reduction in hand function, and change in speech and voice for some time, but today, she realised that the symptoms of MND were in fact worse than she had thought. She is now having difficulty swallowing.

Ms. S was aware that this was going to happen at some point because she had received a letter from her neurologist suggesting that she has a PEG (percutaneous endoscopic gastrostomy) tube inserted. That is, a tube in to the stomach which allows nutrition to be provided whilst completely bypassing the swallow mechanism. It is important for this to be placed now as if too long Ms. S may not withstand surgery due to decreasing lung function. Again, a tricky subject because PEG tubes are life prolonging and as I'm sure you've realised, living with MND is not easy and not everyone chooses to prolong their life.

In fact in my opinion Motor Neurone Disease is one of the most crippling and devastating diseases that I know of.

People talk about the glass half full or half empty phenomena. I'd like you to think about this in another way.

Before people are diagnosed with MND their glass is full …of friends, family, work, sport, reading, eating, breathing; everything that we all do. Over time, their glass evaporates drop by drop. Very small changes in function occur each day, some more noticeable than others. It is at that time, when people with MND feel ‘impaired’, that we must highlight to them what they can do. While there is time to grieve for the function that is lost to MND, do not let MND define who a person is. It is a disease, not a person.

The next time you meet someone with MND help them to make every last drop count!


Read more MND stories:

/~mndasnau/June's%20MND%20Story

I am 86 years old and up until June 2018, I was a reasonably healthy person who led an active life and loved communicating/ socialising with family and friends.

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Did you know that we have two equipment volunteers who help our Equipment team supporting people...

/~mndasnau/An%20Ode%20to%20MND%20-%20A%20poem%20by%20Joy%20Blakely

An Ode to MND is a poem about daily life whilst living with motor neurone disease written by Joy who had MND.

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My two boys Marcus (10 years old) and Harry (8 years old) unfortunately lost their nana to MND in April 2018.

/~mndasnau/Cosmologist,%20space%20traveller,%20hero!

In my time at MND Victoria so far I have had the chance to engage with individuals whose resilience in the face of adversity is inspiring.

/~mndasnau/Goodbye%20Friends

Brian was the last to go. He too died from motor neurone disease – that is the disease whereby the neurons stop working and cannot convey messages to the muscles ...

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41 year old Dean is married to his childhood sweetheart Paula and father to two teenage boys ... in July 2015 their life came to a halt when Dean was diagnosed with MND.

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When Pam’s son was diagnosed with MND three years ago, she didn’t know what to do. As a mother she felt so useless, she couldn’t do anything except love him.

/~mndasnau/"Living%20the%20Dream"

Gavin McCann was diagnosed with motor neurone disease in January 2015. Being told this news is devastating for anyone. Gavin however, used this news to live out his long time dream.

/~mndasnau/Andy's%20MND%20Journey

Andy's MND journey began after noticing difficulties with slurring speech. Medical investigations led to a local neurologist in May 2015, who suggested motor neurone disease ...

/~mndasnau/Diagnosed%20with%20MND%20-%201%20June%202016

I was a stay at home single mum with 3 children aged 5, 7 and 9 in 2003 and my youngest was recovering from cancer treatment. I had left my husband in 2002 ...

/~mndasnau/Kokoda%20Challenge%20-%20meet%20Beck%20Mason!

Rebecca Mason more than deserves the title of legend. Beck lives in Portland but makes the trip up to Geelong regularly to be with her best friend who has MND.

/~mndasnau/Funny%20story!

Went to a medical appointment recently at our local medical centre in Emerald, Vic, in my Frontier Tilt in Space wheelchair supplied by MND Vic ...

/~mndasnau/Karen%20and%20Geoff's%20MND%20Story

Not only is this disease so horrible to endure for the sufferer of MND. But the other side of the coin is the partner and family trying to cope with the emotional issues ...

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This experience not only significantly impacted my life, but also helped me develop as a person and become who I am today and the person I will become tomorrow.

/~mndasnau/Dealing%20with%20Motor%20Neurone%20Disease

I can talk, I can walk, I can swallow, I can read, I can write, I can itch my head if I need to, I can laugh when I want to. I can wipe my own tears. You're thinking, what's the big deal?

/~mndasnau/Mixed%20Emotions

A poem written by one of our volunteers about her experience of motor neurone disease ...

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"It’s the understanding, knowing that when I phone you, MND Victoria always understands ...
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I remember the first time I ever heard the words “Motor Neurone Disease”.
/~mndasnau/Liz%20and%20Rob's%20MND%20story
On March 28 this year my partner of 21 years died in my arms. She was 54 years old when diagnosed in June 2016
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Last year’s Camino walk was raising money for those that can’t do it and it was in memory of my husband and his father.
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My husband dances with me, but not as often as he used too, and he doesn’t like the fast songs.
/~mndasnau/In%202012,%20I%20was%20one%20in%20a%20Million*
Being a good brother he said nothing about the change but assumed that little brother, at age 77 had taken up the booze.
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Neither John nor I expected this ... when the future with MND was explained it felt like we’d been hit by an express train.
/~mndasnau/Cheryl's%20MND%20story
When Cheryl received the diagnosis of MND in 2002 she was 32 years old, married and had a 3-year-old son, Mark.
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I have been let’s say, "fortunate" enough to have had MND for nine years, instead of the average two ...
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As Brett’s disease was progressing very fast, his life expectancy was about nine months.
/~mndasnau/Barry%20and%20Carol’s%20MND%20story
Carol and I had retired from a lifetime of farming and were planning to grow old together ...