Travelling with Parkinson’s- tips for a great journey
Getting going.
Living with Parkinson’s doesn’t have to stop you from travelling! In some research carried out by Australia’s Monash University (Warren et al.), about Parkinson’s affecting the ability to travel locally and internationally were highlighted as impacting Quality of life. While there can be some additional challenges, research and planning can easily overcome them, enabling many people with Parkinson’s to continue to enjoy travel.
Do your homework!
Research your destination, check out where you are going, and invest in a good guidebook which includes information on accessibility. Trip advisor and other peer review sites can also provide some tips on access and disability support, as well as other tips and highlights at your planned destination. Do some investigating to find out about safety issues and other hazards. It’s never good to holiday in a war zone! You can also check out if the place you are visiting has a local Parkinson’s association, because they may give you an insight onto what services and supports are available locally.
Getting help in the planning can be useful. While booking everything online can be attractive and has the flexibility of making your bookings 24/7, finding a travel agent to do all the running around may be easier and save time. When you are thinking of using a travel agent, make sure you use one who has some experience and willingness to do some research. This can let you know that the lovely hotel in London you were thinking of has impossibly small rooms and identify what accessible accommodation options are available. When you or your agent books your airfare or other transport, they will also be able to book any additional assistance you may need. You should always do this as soon as you can and avoid doing it on the day you are travelling!
Protection!
Consider getting travel insurance early - often at the point where you’re starting to pay money and investing in a policy that includes cancellation. You will need to disclose that you have Parkinson’s, and some companies will request a letter from your doctor or neurologist on your fitness to travel. Having Parkinson’s will not prevent you from getting travel insurance, and once you have disclosed your diagnosis it will be listed on your policy (you may need to pay a little more). You may need to shop around for the coverage, which is right for you and your trip. Sometimes using an insurance broker or having your travel agents, who can canvas the different policies and explain their features, can save you time and get coverage which meets your needs.
If something happens and you think you may need to make a claim, gather as much information as you can. This might include photographs, receipts, or names of witnesses to support the claim you make. In most cases, the insurance will only cover things you aren’t able to claim back directly from the provider- e.g. for a cancelled airfare, you make the claim for the money which the airline has not refunded.
If you’re travelling to a destination where you need vaccinations, be aware you may need to have these several months before you travel. Some countries also need you to have proof of vaccination before they let you enter. There is little evidence suggesting a vaccination or anti-malarial medication will affect Parkinson’s or interact with treatment, and most people have no difficulty. When you have your vaccinations, it is common to feel lethargic, generally unwell and sometimes feverish for a few hours following the injection. For some people living with Parkinson’s this may feel a little like your medications are wearing off. This shouldn’t persist for longer than 3-4 days.
Many travellers experience some nausea, vomiting or diarrhoea - managing this quickly and correctly will get you back up and enjoying your trip quickly. In Parkinson’s many anti-nausea medications need to be avoided as they can worsen symptoms, but it is worth getting a supply of the anti-nausea tablets you can take just in case. Travellers’ diarrhoea is often caused by bacteria in food or water and is easily overcome with antibiotics, which are safe to take with Parkinson’s. If you are using medication to stop the diarrhoea try to use them sparingly, remembering a common Parkinson’s symptom is constipation.
Fasten your seatbelts
Unfortunately having Parkinson’s will not get you an upgrade to Business class! Many people with Parkinson’s may feel they don’t need any special assistance from the airline; however this is a service available to all passengers. To access any level of assistance, you should ask when you book either with the airline directly or through your travel agent. Common things to ask for are assistance from baggage check to the gate (especially in big airports) and a seat near the toilets. The airline may allow you to carry on additional baggage if this is medical equipment.
Once you’re ready and you’re packing your bags, don’t forget your medications! You should have at least a week worth of medications with you in your carry on. Luggage rarely goes astray, but its best to be prepared. It’s also a good idea to have your medications in the original containers and bring your prescriptions as well. Taking an extra week’s worth of mediations is a good idea in case of delays or if you decide on an extra few days is Paris!! Medications may not be available in some countries, or they may have different strengths. While there are no medications for Parkinson’s which are prohibited, getting a letter from your doctor with a list of your medications can assist if there are any concerns raised during your journey. If you are using an infused therapy, there are often support services to assist with transport of the medication to your destination. Your treating doctor should be able to let you know what is available or put you in contact with a representative from the pharmaceutical company.
Once your bags are checked and you’re ready to go, getting through security is often enough to cause anxiety in even the most seasoned travellers. Remember the security officers are there for our protection but may not be familiar with Parkinson’s and some of the changes it can cause. When you’re approaching security, give yourself plenty of time, take your belt and shoes off and put your phone wallet/purse in your bag. If you have problems with freezing, look ahead and concentrate on maintaining big steps as you walk through the metal detector.
If you have had DBS, you shouldn’t go through the metal detector or have them pass the wand over you, since there have been some reports of these instruments interrupting the stimulation. You will still have to go through security but may need to be frisked instead. A letter from your doctor explaining you have an indwelling electronic devise will smooth this over. Always have your DBS charger or reader with you, as it is a medical device and does not count as a piece of carry-on luggage.
Juggling medications in different time zones can seem challenging. As a rule, try to maintain normal medication patterns as you would at home. So on night sectors you’re taking less medication and for daytime sectors you treat as day. Consider your arrival time when working out when its night-time, this can mean you have some extra-long days and may need an extra dose of medication as a top up. When you are arriving or transiting, you may need to take an extra tablet to get you through the airport, and to settle into your new time zone. Speak with your neurologist or a Parkinson’s Nurse who can give you some tips on medications.
Victor McConvey presented at the 5th World Parkinson Congress in Kyoto, Japan, and he was on the WPC 2019 Program Committee. Victor McConvey is currently a Clinical Nurse Consultant and Health Team Manager at Parkinson’s Victoria.
Ideas and opinions expressed in this post reflect that of the authors solely. They do not reflect the opinions or positions of the World Parkinson Coalition®