Being an MND Carer

After MND Going to the Deep
Pre-wedding, Tim & Angela going to the Deep in Hull, June 2017

 

Motor Neurone Disease (MND) is a progressive condition that is terminal, a person who suffers from MND is going to need a great deal of care as the disease progresses. My wife was diagnosed with MND only five months ago. This is written as a guide to anyone who is faced with becoming a carer for someone with MND.

I want to explain something first, every case of MND is different and it affects people in different ways and at different rates of speed, the first thing the MND nurse told us when Angela was diagnosed was “Do not believe everything that you read on the internet, every case is different”. This is written from our own personal experiences that we have faced over the last five months.

One of the issues that a person diagnosed with MND may experience is dysphagia; dysphagia affects one’s ability to swallow. This is troublesome when it comes to eating and drinking because certain foods can become stuck in the throat and this can result in choking. With a little trial and error we found out what my wife can and can’t eat, and believe me it is distressing when you see for the first time someone choking on their food.

The dietitian from the hospital provided us with some literature on the subject of foods that can be eaten safely, we also found out that softer foods are far better for swallowing such as cottage pie and fish in sauce; these are far more palatable than what Angela was given to eat in the hospital.

The muscles are weak, when it comes to chewing and swallowing this can make mealtimes twice as long, and as a result food will go cold, we found that keeping the food warm makes it more easy to chew and swallow, I would suggest the purchase of a ‘keep warm plate’ this is a plate that you fill the base with warm water and this will keep food warm longer.

Also, communication is a problem with dysphagia because of the muscles been so weak. Angela’s speech is nearly unrecognisable now and this can be frustrating for her to get across what she wants to say to me. The Speech and Language Therapists (SLT) at the hospital provided Angela with an IPad that has speech technology which she can use to communicate with us.

We found that the IPad is somewhat awkward for traveling around with, especially with everything else we have in the bag so. Angela found an app for her smartphone called ‘Speak for Me’ it does the same thing as the IPad, but it is less clumsily and she is carrying one device instead of two.

Angela also uses sign language to communicate with me, but sticking two fingers up at me does not tell me much apart from the obvious. I know that we are only five months into this terrible diagnosis of MND, but we have already learned so much about MND and we have a lot to learn yet…

 

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