Six people are diagnosed with motor neurone disease (MND) every day in the UK.
This rapidly progressing disease affects the brain and spinal cord. It attacks the nerves that control movement so muscles no longer work and it can leave people locked in a failing body, unable to move, talk and eventually breathe.
Here, the Motor Neurone Disease Association gives their advice on planning holidays when living with MND.
Planning the destination
If you have MND, it is important that any break meets your physical needs. But enjoying your holiday, based on your interests, is important too.
Start with an idea of the type of resort, destination and price range that appeals to you, rather than beginning your search based purely on accessibility. Many holiday choices can be made accessible with forward planning. Once you have decided on a destination then you can begin looking for accessible accommodation to suit your needs.
Some self-catering properties, hotels and guest houses have disabled facilities ranging from wet rooms to hoists. Make contact well in advance and again just before departure.
Even if the accommodation says it has access for wheelchairs, ask detailed questions to ensure it is suitable for you. When booking, ask whether staff are able help with care, special diets and any other specific needs you may have.
Planning the journey
Start the process early and be sure to book any help you need in advance. Research your destination, taking contact details for local facilities you may need, such as wheelchair repair shops and pharmacies. If you are a wheelchair user you might carry a small tool kit and a puncture repair kit for emergency repairs to your wheelchair. If you are travelling by plane, you may not be able to take some tools due to security, so check what is allowed by your airline. It can be useful to know the weight and size of your wheelchair, both unloaded and with you sitting in it.
Travelling with medication
Prescribed feeds and fluid supplements can be taken through security as long as they have the original label and original packaging as given by a pharmacy. The pharmacy can also mark the prescription as ‘Essential Medication’. An accompanying letter from your GP, consultant or dietitian is also helpful to take, as is details of the ingredients in case a new prescription is required while you’re away.
If you use supplements such as fortified drinks or thickeners, it may be possible to arrange delivery to Boots the Chemist or other pharmacies if there is a branch located past the airport security area. Order by phone and ensure you ask for the branch after security and give the pharmacy plenty of notice to ensure they are able to order in your product. They may also be able to arrange for any additional fluids that are not needed in-flight to be sealed in a transit bag for additional onward flights.
For large amounts, contact the manufacturer directly to find out whether they ship to the country you are visiting. There are similar products available in other countries, so ask the manufacturer if their products are available under a different name or if they can suggest an alternative product.
It is worth noting that in the USA you will not be allowed to carry any fluids in hand luggage on forward connecting or internal flights. Check the security rules before you travel.
You may not have access to the equipment you need in your holiday property but many places allow equipment to be rented. You can source care workers through the Disabled Carers Directory. The Disability Aid Trust may also help towards the costs of care workers.
If you have MND, you may be using a ventilation device to support your breathing. In most cases, you can travel by air whether you use ventilation some of the time or need it continuously. However, you may need to be assessed to see if you are fit to fly.
Source: Motor Neurone Disease Association