Living with Motor Neurone Disease

“Yesterday I decided to give up something, not for Lent, but permanently.

Since this disease has taken hold, I’ve got used to abandoning things. I gave up rollerblading three years ago and skiing two years ago. The weakening of my legs put me in a wheelchair some months back. But giving up the flute yesterday hurt a little bit more. The first two had been activities, the third about getting from A to B; but the flute was somehow more part of my soul.

When I was travelling in my late 20s, it was always with me, in my backpack. It became a way of communicating and entertaining. Playing was a way of expressing some facets of my personality that I had difficulty in doing otherwise; the flute was a way of conveying tenderness and softness. On my second date with my wife Ilana I played a piece from Orpheus in the Underworld and it became “our song”.

In the past couple of weeks it had become more difficult to play long pieces. I could not hold the flute up for more than a minute or two, despite all efforts to prop my arms up; my fingers stiffened as soon as my arms began to give out. It was clear that I would have to give up; another activity to consign to the “I used to” pile. At this stage, I am becoming an expert in how to manage loss. I have realised that’s the main skill I need just now.

Yet, although I wouldn’t recommend motor neurone disease to anyone, I do feel that in some senses I am lucky.

Partly that’s because my particular version of it means that I’m living longer than most that have it. That has given me time to adapt to the illness and to follow some advice from someone else with MND: “Don’t dwell on what you can’t do; concentrate on what you can do”.

And so I have not mourned the end of my skiing days or the end of my rollerblading, but rather regarded them as activities that I once did and which I enjoyed. I don’t want my memories to be tinged with frustration. I have tried to replace each former activity with a new interest, such as writing or singing. Singing allows me to continue some form of creativity in music, with the benefit that it is a meeting and joining in with others, as well as being good therapy.

The medical professionals say that I am taking this illness very positively and some even that my wife Ilana and I are inspiring. I have a mixture of feelings about this. Firstly, I know that I could wallow in self-pity; until I was about 20 I had a tendency do so but, through the remark of a friend realised it wasn’t doing me – or anybody else – any good. I know that my mind and my senses will continue to operate whatever is happening to my muscles, and frankly I need to keep my sanity through that.


I might as well accept the disease and its progression and make the best of my time; it may take over my body but not my identity – I am still above all Crispin and Grandpa.



Further Information: 

Crispin attends our multi professional MND clinic hosted by our Day Services Clinical Nurse Specialist Patrick Barclay – Ball. This incorporates working alongside the acute trusts Neurologists, MND practitioner – Heather Hill and the MND Association.

In order to access our Day Services including our clinics, groups, classes, and complementary therapies you must be referred. Referrals will be accepted from Doctors, Registered Nurses, and Allied Health Professionals. If you wish to self-refer talk to your GP first.

In order to access our services, you or your loved one must live within Brighton & Hove and the surrounding area and have been diagnosed with a terminal illness.

To access our Day Services please contact us on 01273 273400 and ask to speak to the Day Services team or email

If you are a healthcare professional and would like more information please click here

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