Recreation can become extremely important to people with limited activity. Where possible, pre-illness activity should be maintained, or modified to allow for limitations imposed by the disease. An occupational therapist may be able to offer suggestions or provide aids that will enable the person with MND to continue present interests or to identify alternatives.
Rest and recreation for the carer are important too. Being a carer is an exhausting role. Support from others (family members, friends, employed staff) enables the carer to take a break, pursue interests and hobbies, fulfil other commitments, and 'recharge the batteries'. The person with MND may also welcome the change of routine and added interest that outside contacts bring. Respite for the carer can be provided through the home or in the community. Longer breaks may be arranged by having the person stay in a residential setting such as a hospital or an aged care facility.
Information on recreational and leisure activities and living with MND includes:
It is important to get the height and angle of the reading matter correct. To support books, e-book readers, tablet devices, magazines and small newspapers:
- Use an adjustable table or bookstand. Place non slip material under the item.
- Use a stationer's rubber thimble on your finger (or on the end of a short wooden rod) to turn pages more easily or for e-book readers and tablets use a stylus.
- Have steel paper clips attached to each page by a helper. A small magnet attached to the end of a short stick makes page turning even easier.
- Use an electric page-turner. They 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.
- Many texts are available in a variety of formats such as “audio books”. For further information visit Vision Australia’s library.
This is an absorbing, creative pastime and remarkable results have been achieved by people who are not able to use conventional means.
People who cannot paint with their hands may be able to paint by holding the brush or pen in the mouth. For safety, a special mouthpiece is normally used; consult your dentist about this.
Art shops now stock water-colour pens and pencils, which are cleaner to use than conventional brushes and paints.
Sewing and Craftwork
For information about specific crafts, seek assistance from an occupational therapist or the Independent Living Centre.
Try the following:
- Long dressmaking pins with large heads.
- Anchor your pincushion with a suction cup pins are easier to get hold of.
- Needle threaders for both hand and machine needles.
- Electric or lightweight scissors.
- Clamp embroidery frames to a table.
Cards and Boardgames
- Use a cardholder. It will take a full hand of cards and display them.
- Display cards in an upturned clothes or scrubbing brush.
- Use an automatic card shuffler.
- Use large cards, they may be easier to handle.
- Play games for which large size pieces are available (chess, draughts, scrabble, dominoes).
- Play computer chess and draughts you can even play alone.
There are many simple ways of making a pen or pencil easier to grip:
- Build it up with elastic bands, pimple rubber or foam, special pen grips or Plastazote tubing.
- Push the pen through the holes in a practice golf ball.
- Use a pad of paper rather than loose sheets.
- Use a Dycem mat to prevent the paper slipping.
- Use a felt-tip pen it requires less pressure than a ball-point.
- Markers are easy to hold and make bold strokes.
Many parks now have wheelchair access, some even provide all terrain wheelchairs and accessible and modified cabins for visitors who require it.
To find out more, visit the Parks Victoria website.