Motor neurone disease (MND) - recreation and leisure

Motor neurone disease (MND) - recreation and leisure

Motor neurone disease (MND) often begins with weakness of the muscles of the hands, feet or voice. Where possible, continue to participate in activities you enjoyed before the onset of your illness, modifying them where necessary.

Rest and recreation are also important for carers of people with MND. If you are caring for someone with MND, seek support from other people and make sure you take regular breaks from your caring role.

Reading with MND

To make it easier to enjoy reading:

Use an adjustable table or bookstand and a non-slip mat to stop books from slipping.

Use a stationer’s rubber thimble or a short wooden rod to turn pages more easily, or use a stylus for e-book readers and tablets.

Have steel paper clips attached to each page and use a small magnet attached to the end of a short stick to make page turning easier.

Use an electric page-turner. These can be operated by a variety of switches, but bear in mind that they are bulky and tend to be temperamental. Not all models take newspapers.

Use an e-book reader – these are portable electronic devices that are designed primarily for the purpose of reading digital books and periodicals.

Some portable multimedia players and smartphones include a text viewer and can be used as an e-book reader.

Talking books for people with MND

Audio books are available from local libraries or from the

Vision Australia

library

External Link

. Vision Australia library members can borrow a wide range of titles for free, in a variety of formats, including digitised newspapers and magazines, ebooks and podcasts.

Painting for people with MND

People who cannot paint with their hands may be able to paint by holding the brush or pen in their mouth. Ask your dentist about a special mouthpiece. Watercolour pens and pencils are cleaner to use than conventional brushes and paints.

Writing for people with MND

To make writing easier:

Build the pen or pencil up with elastic bands, pimple rubber or foam, special pen grips or high-density foam tubing.

Use a pad of paper rather than loose sheets.

Use a non-slip mat to prevent the paper slipping.

Use a felt-tip pen.

Try using markers as they are easy to hold and make bold strokes.

Computers for people with MND

Computers need minimal finger pressure and a rest can be used to support the arms. They can also be used as communication aids by people whose speech is affected. Computer games and social media platforms can be a way to connect to other people.

Get advice before buying a computer and choose one that can be adapted to meet your changing needs. You can also seek advice from

Independent Living Centres

Australia

External Link

.

Sewing and craftwork for people with MND

To help with sewing and crafts:

Use long dressmaking pins with large heads.

Anchor your pincushion with a suction cup.

Use needle threaders for both hand and machine needles.

Try electric or lightweight scissors.

Clamp embroidery frames to a table.

Seek help or advice from an occupational therapist or Independent Living Centres Australia.

Cards and board games for people with MND

You can still enjoy cards and board games if you:

Use a cardholder.

Use an automatic card shuffler.

Use large cards.

Play games for which large size pieces are available (chess, draughts, Scrabble, dominoes).

Play computer chess and draughts.

Sport for people with MND

Many people with MND participated in sport before the onset of their illness. Although further active participation may be limited, you can keep up your interest and commitment by maintaining links with local clubs and enjoying companionship and support.

Parks for people with MND

Many parks have wheelchair access. Some parks even provide all-terrain wheelchairs and accessible and modified cabins for visitors who require them. Visit

Parks

Victoria

External Link

for further information.

Where to get help

Your GP (doctor)

MND

Victoria

External Link

Tel:

1800 777 175

Independent Living Centres

Australia

External Link

Tel.

(03) 9362 6111

or

1300 885 886

Parks

Victoria

External Link

Tel.

131 963

NDIS

External Link

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