FEA TURE ne urology

The impact of motor neurone disease and the role of occupational therapy
Senior OT Claire Fitzsimmons looks at the role of the multidisciplinary clinic at Aberdeen Royal Infirmary, supporting people with motor neurone disease

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otor neurone disease (MND) is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Degeneration of the motor neurones leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs, and difficulties with speech, swallowing and breathing (MNDA definition). OTs play a vital role in supporting individuals with MND and their families at all stages of the illness. With progressive wasting of muscles and increasing weakness in limbs, this has a significant impact on an individuals function and ability to carry out their daily activities. The presentation and progression of symptoms is different with each person. This requires a flexible, needs led service to be provided by the OT and rest of the multidisciplinary team. In the early stages of the disease the occupational therapy role will involve providing support and education to individuals and their families. This may include discussing fatigue management strategies or issuing small aids to assist with personal care, kitchen tasks, and feeding. If an individual is still working, consideration will be required regarding changing roles or responsibilities at work, assessing work environments, or advising on adaptations to computers and workstations. Sensitive issues such as housing need to be addressed early on, due to the often rapid progression of the illness. It is important to always be thinking ahead and planning what an individuals future needs may be. This will ensure appropriate support is always available, allowing time to order equipment and complete adaptations.

This can be a major challenge, especially in the early stages of the disease when an individual may still be coming to terms with their diagnosis, their symptoms may be few and they may be reluctant to look ahead at what their future may, or may not, bring. In the later stages, when an individual is more dependent, the OT role may involve assessing transfers, providing hoists, providing toileting/shower equipment, review of seating, and onward referral for supportive seating, including powered wheelchairs. OTs strive to allow individuals to maintain function and quality of life throughout the progression of this disease. In Aberdeen, we run a monthly multidisciplinary clinic for individuals with MND. This clinic was established over 12 years ago and is the longest running clinic of its kind in Scotland. It comprises a consultant neurologist, MND care advisor, OT, physiotherapist, speech and language therapist, dietician and a palliative care registrar; we also have access to social work services. Individuals who attend the clinic have already been given the diagnosis of MND and are known to the MND care adviser. The clinic aims to provide a practical service where any problems or difficulties can be identified and addressed as early as possible by the appropriate member of the multidisciplinary team. At each clinic, discussion will include upper and lower limb function, speech, swallow, breathing and psychological adjustment to the diagnosis, for both the individual and their families. Individuals are reviewed on average every three to six months. This allows deterioration in an individuals condition to be monitored, which in turn allows referral onto appropriate community services in a timely manner.

Paul Tearle

Due to the often rapid deterioration in an individuals function it is important that any necessary medical interventions, for example alternative feeding, respiratory review, or therapy interventions, including equipment and adaptations and support, are identified and provided as soon as possible. This is in order to allow individuals to maintain as much function and quality of life as possible.

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neurology FEATURE

Due to the often rapid deterioration in an individuals function it is important that any necessary medical interventions, for example alternative feeding, respiratory review, or therapy interventions, including equipment and adaptations and support, are identified and provided as soon as possible. This is in order to allow individuals to maintain as much function and quality of life as possible. As this specialist clinic covers a large geographical area, a significant part of our role involves linking in with local therapists and providing information and support to community staff who may have very limited experience working with this client group. Community staff are crucial in providing the ongoing local support and input to these individuals. As OTs we have a crucial role in the ongoing management of the debilitating and devastating condition that is motor neurone disease. We support patients to maintain a level of independence and function in their own environments for as long as possible, while ensuring dignity and quality of life at all times.
Claire Fitzsimmons, Senior OT, neurology/ neurosurgery, Aberdeen Royal Infirmary. Email: cfitzsimmons@nhs.net

m marimbad awake at 6.45am an alarm I can ignore, but it signals the beginning of the day for my wife. She snoozes the iPhone and starts the process of grabbing as many dozes as she can and still get the children out of house on time. Upstairs I hear my son in the shower. At 12 years old, he (mostly) organises himself to ensure he catches the 7.50am bus. As she passes my side of the bed I call out through the mask: Wee. She returns with the plastic bottle, sets it down and begins to organise me to be able to use it. The duvet is lifted back, she rolls me to my left side, careful not to snag my air or feed tube. Next my legs are lifted past the bed lever and my placed on the floor. Slipping her right hand under my shoulder and with her left on my hip, she lifts me into sitting. I wait a moment or two for my spine to take the load and my organs to arrange themselves, and then shuffle forward to the edge of the bed. Taking the bottle from her I empty my bladder as she looks down on me. At least I assume she does, all I see is the bottom of her dressing gown and her feet. Sitting unsupported Im unable to raise my head from where my chin rests on my chest. I use the bottle as silently as possible, my attempt at denial. Finished she takes the bottle, caps it and helps me back to bed. Covered and comfy, this is often when I sleep most deeply. Im deaf to the sounds of the wakening house, oblivious to the morning chaos of my daughters. Often Im unaware of sensation too; my wife disconnects my feeding tube and flushes it with a large syringe of water, yet I sleep on. My alarm clock arrives about 9am. Shes my carer. Efficiently, sensitively and discretely she gets me ready for my shower. First the facemask is removed, the ventilator switched off and I can speak more than single words for the first time in ten hours. Carefully she sits me up. I hold the bed lever for balance as she positions my shower chair. I lean to my right and my carer slides the banana board halfway beneath my backside, before helping me sit straight again. She places her hands on my hips and we one, two, three our way across the transfer board. Wheeled backwards through the house to the wet room, Im parked close by the toilet. She removes the towels from my shoulders and legs and takes off my pants. Handing me the bottle and a couple of squares of toilet paper, she leaves the room: Give me a shout when youre done.

I use the bottle and take a small degree of comfort in still being able to empty it myself. I call her back in. She turns on the water and while it warms, rinses the bottle and flushes the toilet. The restorative power of the water raining down on my head and shoulders is enormous. Now I actually feel like talking, not just responding. Back in the bedroom, we transfer back to the bed where Im laid out and dressed. Another transfer, Im in my power chair, independently mobile and some sense of control returns. In reality every day is an endless stream of TV, toilet stops and ventilation my triangular tour of the house, family room, wet room, bedroom. By mid afternoon I need to use the noninvasive ventilator to pump myself up, physically and mentally. I sit for an hour or so in my bedroom looking out at the clouds as air is forced into the depths of my lungs. Over the last few weeks Ive watched the tallest tree in the neighbourhood, a huge silver birch change shape as it loses its leaves. Like me, the periphery fell first, gradually revealing the skeleton. I still feed myself, albeit in a clumsy parody of good table manners. It takes two hands to lift and guide the fork, and still the odd forkful will land on my T-shirt. Sitting with my chair pulled up to the dining table, I wonder what my children think as they watch their Dad. I console myself that they are too busy competing to tell their day to notice. Bedtime brings the final transfer of the day. I lie flat on my back on the bed, while my wife undresses me and straps the ventilator to my face. No more kissing or talking for us tonight. After flushing my stomach feeding tube with a syringe of water, twisting it round and stabbing it in and out to prevent adhesions, she connects me to another litre of feed. In some absurd corruption of biology, Im travelling in two directions at once. Forward, through the accelerated ageing and dying of my motor neurons, to death, and backward, as my functional capabilities diminish, to the life of a newborn baby. Except, that unlike me, a baby can breathe comfortably and unaided lying flat. I am 46. I have a wife, three children, and motor neuron disease is killing me.
Mike Arnott is a client of the multidisciplinary clinic supporting people with motor neurone disease at Aberdeen Royal Infirmary

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