Travelling with motor neurone disease

Posted on June 1, 2016 by Guest Writer
Couple looking at the sunset

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. It has no cure.

It is fatal and can kill fast; a third of people die within a year from diagnosis, and more than half within two years.

This month the MND Association will be running a major awareness campaign focusing on a number of powerful Shortened Stories – real people whose lives have or will be cut short by MND.

Faced with such a devastating diagnosis, many people with MND book their bucket list holiday or decide to spend more time abroad visiting family.

Here the Motor Neurone Disease Association offers some information to those living with MND on planning holidays.

Planning the destination

If you have MND, it is important that any break meets your physical needs but a holiday is also a very personal decision based on likes and interests.

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 and research your destination, taking contact details for local facilities you may need, such as wheelchair repair shops, pharmacies or other facilities.

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 and 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 dietician is also helpful to take, as is details of the ingredients in case a new prescription is required whilst abroad.

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.

MNDA_Shortened Stories

Extra support

You may not have access to the equipment you need in your holiday property but many places allow equipment to be rented. Tripmobility can help you to arrange for equipment to be delivered to your holiday destination. You can also 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.

Other information before travelling

It may be useful to carry a doctor’s letter in your hand luggage to explain your medical condition and treatment, with contact details of your specialists. Taking one of the MND Association’s Alert Cards in your wallet, purse or key documents when travelling to English speaking countries will tell hospital staff that you have MND if admitted in an emergency and shows key contacts for specialist advice.

Ensure you take any documents you may have about your wishes for care when travelling to English speaking countries and carry a set of printed phrases of key information in the local language and English to help you explain your needs when abroad. This can save time and anxiety at the airport and during the flight if you have speech and communication difficulties.

Finally, find out contacts for emergency services and ask the airline for a Frequent Traveller’s Medical Card if you often travel by air, as this makes it easier to arrange each journey.

MND travel insurance

Your premium or excess is likely to cost more because of your diagnosis. Medical treatment is more expensive in some countries, so this may also increase the amount you pay. Remember to obtain more than one travel insurance quote to compare costs and always read the policy document to check that MND is covered. If you are going abroad, check whether your insurance covers an unscheduled return flight in case you need to come back early.

If you are taking any special equipment on your travels, this may get damaged, lost or stolen in transit and can be expensive to replace. You may wish to insure these items, or take out extra insurance for the period of the holiday.

The Association’s MND Connect helpline have contact details of companies who are currently known to support people with MND with holiday cover. You can contact MND Connect on 0808 802 6262 or via email at mndconnect@mndassociation.org.

Euan’s Guide

Euan’s Guide is a website created by Euan Macdonald, who is living with MND.

He said: “I realised that I couldn’t be alone in my search. I knew other disabled people would be able to recommend accessible places to go, and I was very keen to hear from them, their families and carers.”

It is a disabled access review website and app where people can share their experiences of disabled access wherever they go.

Further information can be found at www.mndassociation.org.

Travelling with MND