Until there's a cure ... there's care

The following sections give ideas for overcoming some common practical difficulties, but they are not exhaustive.

The range of equipment available is extensive, and it is difficult to know what might be useful. It is well worth while getting advice from an occupational therapist or from the Independent Living Centre.

Also bear in mind that MND Victoria’s Equipment Service has a wide range of commonly used items available to people with MND.

Chairs

The support provided by a chair, and its height and stability, are important for people with MND.

  • It may be possible to make a chair more comfortable with cushions or a headrest.
  • An assessment by an occupational therapist or a physiotherapist may be helpful.

The therapist may suggest:

  • Firm upright armchairs.
  • Chair blocks to raise the height of an existing chair.
  • Manual or electrically operated riser or recliner chairs.

Beds

Comfort and maneuverability in bed can be a major problem. Try the following:

  • Bed blocks to raise the height of the bed. This makes it easier to transfer in and out.
  • A monkey pole, a backrest, posture pillows, sheepskins.
  • Mattress elevators to raise a person from the lying to the sitting position.
  • A deep mattress.
  • An adjustable bed, manual or electric.
  • To protect a carer's back when the patient needs assistance, a hoist (mobile or overhead) may be helpful. A careful assessment by a therapist is vital to ensure that the correct hoist is chosen for comfort and safety of both the MND person and the carer.

Working height

If it is difficult to raise the arms, tasks such as eating or writing become possible, or easier, if the forearms are supported at a suitable working height. Ways of doing this include:

  • An adjustable cantilever table, or a box (cut to the required height) placed on the table.
  • A bed tray (with small legs) on the table.
  • Forearm supports, or mobile arm supports (attached to a wheelchair).

Tools and Utensils

To accommodate weakened hand muscles, enlarge the handles of items like cutlery and toothbrushes by using:

  • Epoxy resin, which can be moulded to the shape required.
  • Rubber tubing, which can be slipped over handles.
  • Use a strap, with a pocket, which fits across the palm of the hand.
  • Choose lightweight items.
  • An Occupational Therapist can help you with these adaptations.

Light and power

  • Rocker or touch pad switches can be installed in place of conventional switches.
    Extension leads can be used to bring sockets up to a convenient height.

Alarms, Intercoms and Computers

Room to room communication and alarm calls can be arranged with:

  • Simple units like plug-in baby alarms.
  • Telephone systems that will automatically contact emergency services, family members or friends.
  • Sophisticated units that incorporate radio, video, music, fire and burglar alarms.
  • 'Bleepers' that can be adapted to call for assistance. They can be made to work both inside and outside the house.
  • A buzzer or doorbell, wired to a light-touch switch or pressure pad.
  • Alarms and computers can often be operated by remote control microswitches that can be triggered by movement in any part of the body.
  • Therapists such as a Speech Pathologist or Occupational Therapist can assist in finding the most appropriate item for the person with MND.

Environmental Controls

A large range of electrical devices can be installed to open and close doors, windows and curtains.

There is an even larger range of switches to operate the devices. Switches can be used to control a range of devices such as computers and wheelchairs. Advice from an occupational therapist can help in making a choice.

All these devices help maintain independence, but it may be easier and cheaper to make use of readily available devices, such as plug-in timers to control heaters or switch on lights.

Door knobs and Locks

It often helps to provide extra leverage on knobs and keys by:

  • Using a multipurpose knob turner.
  • Installing larger knobs on door locks.
  • Enlarging key grips.

Telephones

  • Use a hands-free telephone - it has a microphone and loudspeaker that enable you to talk without lifting the handset.
  • Use a telephone with the ability to store frequently-used phone numbers - they can be dialled by pressing just one button.
  • Telecom Australia Disabilities Program Branch can provide special telephones.

Cordless telephones can be useful, but:

  • Check whether you can easily operate the handset.
  • Check whether it is light enough to hold.

Carrying

With weakened muscles, carrying things can be a problem. Try the following:

  • Use an apron with big pockets (e.g. a gardening apron).
  • Use a bag slung diagonally over the shoulder or round the waist.
  • Use a tray with non-slip surfaces such as Dycem.
  • Use purpose-built, stable trolleys.