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The voice of Scotland’s vibrant voluntary sector

Published by Scottish Council for Voluntary Organisations

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People don’t know how to react around MND

This opinion piece is about 6 years old
 

Ruth Williamson talks about how life has changed since she was diagnosed with MND in December of last year

I was absolutely shocked. The neurologist I initially saw advised me not to Google anything. This was the best advice as ignorance is definitely bliss. I didn’t have any idea MND was a possibility.

I have found it incredibly difficult to come to terms with and not sure I ever will. I had dreamt of having a big family, doing all my favourite things like skiing, cooking, cycling and playing music with my children. We bought a house just before I was diagnosed but due to what the future is likely to hold we had to pull out and have since bought a lovely ground floor flat with a garden.

The most difficult thing for me is my daughter. I can’t bear the thought of not being able to look after her any longer or not be here with her in the future. Like any mum I utterly adore her and I have shed so many tears even thinking about it. It’s tricky though because the thought of not having her is so much worse - she keeps me smiling every day.

Ruth Williamson
Ruth Williamson

I first realised something was wrong about five months before I went to the doctor.

I started noticing my speech slurring – especially after having even a tiny bit of alcohol. I didn’t go for quite a while but it got more and more obvious and I started finding it hard to chew, or brush my teeth, without dribbling everywhere.

Everything has progressively gotten worse. I was particularly passionate about running, cycling and skiing but also loved swimming, sailing, hill walking and climbing in my years at university. Basically I just loved being active and now I can’t do any of that anymore. I’m having problems with the simplest thing; my speech is bad, it’s slurred all the time. I have great difficulty eating and am beginning to notice swallowing is tricky. I have also now got difficulties with my hands – I have lost a lot of dexterity like putting my hair in a plait, cutting vegetables or putting on my daughter’s clothes.

I had just gone back to my work as an energy consultant after maternity leave when I was diagnosed. Since then I have not been at work and am not anticipating going back.

I’m sure that I could carry on in a different capacity but my lack of speech, difficulty with my hands and exhaustion would make it a lot to take on. That coupled with the fact I have a one-year-old who I want to spend as much time with as possible.

I am saddened by this a lot as I loved my job. I had an amazing manager, great colleagues and it really was an inspirational place to work.

Luckily I have an amazing family who are all very close. In addition, all of friends have helped me massively by keeping me doing nice things and staying in touch all the time.

I have had the offer of counselling from MND Scotland which I’m currently pursuing and many lovely emails offering support. I’m sure I’ll need to take the charity up on a lot more support in the coming months, but for now I am spending every minute I can with Anna and Scott, and my family and friends.

I didn’t know much about MND before I was diagnosed except that it’s what Stephen Hawking had. That’s why I am speaking out; to raise as much awareness as possible of this beast of a disease.

I also think that a lot of people don’t know how to react around someone with MND. People can be very awkward when I try to speak and make an automatic judgement.

Recently I went to book an appointment in a new hairdresser and the girl went bright red and just didn’t really know what to say. My speech gets worse when I’m stressed so I ended up having to leave without making an appointment. It’s so hard because I’ve always been a chatty person and would speak to anyone and everyone. Hopefully the more we can make people aware of MND, the less awkward people will feel when they come across someone who is living with it.

Ruth Williamson's article was provided by MND Scotland