Support & Information
Living with MND

Transport and getting about

Most people with motor neurone disease develop mobility problems to a greater or lesser extent. It is unlikely that people living with MND will stay in bed for long periods, but you may need help moving around.

Some people have a tendency to fall, sometimes without warning. Occupational therapists and physiotherapists can advise about access around the home and assist in the provision of appropriate aids to improve mobility and safety.

Please contact your Support Team Member to discuss your current and possible future needs. It can sometimes be difficult to consider your future with MND, but being prepared in advance can help maintain your quality of life.

Driving

Mobility Parking Permit

Application forms for Mobility Parking Permits, so you can use a disabled parking space, are available from your doctor or your local CCS Disability Action Office. You can also access the application form online. All applications must be certified by a doctor. Click here for more information.

Vehicle Modification Grants

The Lottery Individuals with Disabilities Fund makes grants to people with mobility and communication related disabilities. It may fund the purchase of a vehicle (such as a wheelchair accessible van), vehicle modifications, scooters and other mobility equipment that will provide outdoor mobility. It also provides grants to people with communication-related disabilities for the purchase of equipment to facilitate communication. Click here for more information.

Freedom Mobility

Freedom Mobility provides rental vehicles to people with disabilities. Their bases in Auckland, Christchurch, Queenstown and Dunedin have over 100 disability-modified vehicles, including:

  • hand-control vehicles
  • wheelchair hoist and wheelchair lift vans
  • wheelchair ramp vehicles
  • left foot accelerator cars, and
  • vehicles with swing-out seats

Wheelies Van Rentals

Wheelies Van Rentals provides late-model accessible vehicles for private use or  long-term hire. Based in Auckland and Christchurch.

Rod Milner Motors

Rod Milner Motors is an Auckland car dealer specialising in modified vehicles. Offers free freight anywhere in New Zealand on disability vehicles. Also provides short-term and long-term disability-friendly rental vehicles.

Taxis

Total Mobility Scheme

Taking a taxi can be expensive, so a number of regions have jumped aboard the ‘Total Mobility’ scheme. The total mobility scheme supports people who cannot use public transport to travel all, or some of the time. The amount of discount varies from region to region.

The scheme is managed and operated by mobility coordinators in regional councils.

Users are assessed for eligibility and those who meet the criteria are issued with an electronic card. Contact your support team member to find out more about being assessed for a Total Mobility card.

You need to advise the taxi company that you wish to use your Total Mobility card at the time of booking.

Find out about the eligibility criteria, the amount of discount offered, and how you can access the scheme if you’re in:

Nationwide Mobility Taxi Services

There are a growing number of accessible taxi companies operating throughout New Zealand. Please advise taxi services of your needs (e.g. if you need a hoist) when you order a taxi so they can send the best vehicle to meet your needs.

For more information on the Total Mobility scheme, visit the Auckland Transport website.

Travel and holidays

Holidays can be an essential way to recharge your batteries, particularly in times of stress or illness. Getting away from your normal environment and routines can really lift flagging spirits. It is possible to travel and have holidays with MND, with a bit of extra research and preparation.

Accessible accommodation

Many holiday choices can be made accessible with forward planning. Start with an idea of the destination and price range that appeals to you, then you can begin looking for accessible accommodation and activities to suit your needs.

Be Accessible (Be. Lab - New Zealand's Accessibility Lab) can help you find accessible hotels all over New Zealand, plus accessible activities. Remember, ‘accessible’ can encompass non-mobility-related difficulties, such as visual impairment, so you’ll need to check suitability for your particular needs.

For self-contained accommodation, Bachcare (www.bachcare.co.nz) lets you filter your search for holiday accommodation by disabled access. However, you will need to carefully check the photos and ask detailed questions to ensure a house is suitable for you. You could also contact a disability travel operator like Ability Adventures (www.abilityadventures.co.nz) to organise your trip for you.

If you have problems walking, or are in a wheelchair, it’s best to telephone ahead to find out what accessible facilities are available at the attractions you may visit. Be very specific about what your needs are. “Accessible" means different things to different people, so you may need to ask if there are ramps, handrails next to the toilet, etc.

Rental Vehicles

For information on accessible rental vehicles, please see Driving, above.

Accessible Motor Homes offers a fantastic holiday around New Zealand in luxury Mercedes motorhomes. Click here for more information

Air and international travel

Many people living with MND continue to travel by air.

When flying in New Zealand, we have found Air New Zealand to be generally well prepared for passengers with limited mobility. Make sure you email Special Assistance () to let them know your needs. Arrive at the airport in plenty of time and make yourself known to airline staff in order that they can make or confirm any necessary special arrangements to get you on board the aircraft.

All Air New Zealand aircraft are equipped with a special torso harness to provide additional support to those with torso weakness in the aircraft seat. You need to request this at the booking stage and on board the aircraft.

Make sure that the airline knows in advance that you require a wheelchair. You will probably need to transfer from your own wheelchair to one provided by the airline at the point of entry to the aircraft, so your own can be safely stowed for the journey. Read Air New Zealand’s full guidance for passengers who use wheelchairs here: www.airnewzealand.co.nz/special-assistance-service-people-flying-with-wheelchairs. Bear in mind if travelling alone, especially on longer flights, a flight attendant will not be allowed to help you get beyond the toilet door.

Some people with MND will need to confirm availability of the Eagle 2 Hoist. The airline has one available for Airbus A320 aircraft at Auckland, Wellington, Christchurch, and Dunedin airports. The Eagle 2 Hoist is a clever piece of equipment that hoists a person up from their wheelchair, parked on the airbridge beside the entrance to the plane, and rolls you into the plane and down the aisle, then lowers you into your seat, and vice versa upon arrival.

You may also need to request a sling in size large, medium or small, or see if a special fitting for your usual hoist sling (if any) is required. You should also confirm the availability of two staff trained in the use of the hoist and sling.

If you need to travel long distances to see a specialist, then you may be eligible for help with expenses under the National Travel Assistance Scheme. These expenses may include travel, accommodation and support person costs. Click here for more information.

International travel

When considering long distance travel, it is essential that you contact the airline or holiday company before booking, to discuss your requirements and explore any limitations on the service they can offer. Be aware that for safety reasons, an airline may ask that a carer travels with you.

If you use a PEG, you’ll need to check the airline will allow your supplies and food on board. If you’re using NIV, check with the airline about a power supply and battery back-up.

Once you have made your booking, confirm your needs in writing. It’s helpful to include a completed copy of ABTA’s Checklist for Disabled and Less Mobile Passengers, to ensure that they have an exact record of your needs (www.abta.com/tips-and-advice/accessible-travel). Add this to a file of paperwork to take with you, along with copies of clinic letters, confirmation of diagnosis, and a list of medications.

You should re-confirm your needs again with the airline at least 48 hours before departure to ensure something has been put in place for you, especially if you are planning on taking your own wheelchair. Pre-notification is vital because without it you have no legal guarantee that you’ll get the assistance you need on your journey.

If you are unable to walk, you will need to check whether your destination airports have the Eagle 2 Hoist. In Europe, UK and the US, International airports are required by law to have available an "airport assistance" service – which involves two people who will physically lift the passenger from their wheelchair to their seat.

It is compulsory for airlines to provide a service appropriate for an individual’s disabilities. More information is available from The Equality and Human Rights Commission.

If you are able to walk, we recommend requesting an aisle seat to make moving around the plane easier. Use the airport wheelchairs provided, even if you don’t usually need one, because there are long distances between arrival and departure gates in some airports. In-flight, get up and move often, and move your feet and ankles often while seated to reduce the risk of DVT.

Having a ‘worst case plan’ can help you feel confident, such as what you’ll do if flights are delayed, or you need to see a doctor while you are away. You may wish to check the MND/ALS International Alliance website or ALSA website in the United States for the contact details of the MND Association or ALSA Chapter closest to your destination, for information on the services they can provide in the event you might need them.

In-flight tips

  • Wear compression stockings
  • Drink plenty of water
  • Take essential medications in your hand luggage (in case the luggage goes to Honolulu and you go to Sydney)

MND Scotland provides the following useful fact sheets with further information on air travel:

Travel insurance

If you are travelling overseas, insurance is essential.

We recommend people with MND use an insurance broker to find travel insurance when travelling overseas. This will give you access to more insurance options than you’re likely to find yourself with a Google search. Brokers approach different insurance providers on your behalf, and are paid on commission from the insurance company (so their service is free for you to use).

A travel insurance broker will take some time to get to know your individual circumstances, as each situation is unique. Unfortunately, not everyone can be insured. Whether you are approved for travel insurance can depend on several factors, including how long you’ve had MND and your destination. Insurance for Australian travel is more easily insured than travel in the US!

See your GP

Try to get an appointment with your doctor before you wish to travel, and before making any payment towards your journey or holiday. You may find it reassuring to see your doctor again nearer to the date of your travel, especially if your condition has changed. Ask for practical advice about any medical issues that may affect you when travelling, such as:

  • How to manage your wider symptoms while you are away
  • How to reduce the risk of a blood clot, known as deep vein thrombosis or DVT, if you are travelling by air
  • What medication to carry in case you become ill, such as emergency antibiotics to take at the first sign of a chest infection.

Wheelchairs

Your Support Team Member and occupational therapist will help you decide when the time is right to begin using a wheelchair or other mobility aids, and will help coordinate the supply and delivery of a wheelchair that is a good fit for you. Some further options are listed below.

City Mobility

People in Wellington are able to use free mobility scooters to get around the city. Scooter hire is free and should be booked in advance, for periods of up to four hours. A beach wheelchair is also available to hire in Wellington, for use on the sand and in the water at Oriental Bay. Click here for more information.

For more information on getting around Wellington, visit Accessible Information - WellingtonNZ.com

Beach Wheelchairs

BeachWheels supplies beach and all-terrain wheelchairs, and kits that convert standard wheelchairs to beach wheelchairs with large ‘balloon’ wheels that work on sand and other difficult terrain. They are not cheap ($399) but if you’re living in or visiting Auckland you can also rent the wheels from Beachwheels directly.

ViMo

ViMo all-terrain lightweight wheelchairs enable people with MND to access places that are difficult or impossible to access with traditional wheelchairs, allowing you to connect with nature, which may improve your quality of life.

Phone: +64 21 43 63 53 or email: View ViMo on Facebook.

Mnd Wheelchair Beach