Travel advice for the Parkinson's traveller
story and images by Celia Jones"I'd love to travel, but I have Parkinson's and it's no longer possible." - WRONG!
Don't give up on one of life's wonderful experiences. Obviously, a lot depends on the level of your disability and your planning, but it is possible. I was diagnosed with Parkinson's 17 years ago, and I think my traveling over the past 10 years has helped slow my deterioration.
How do I prepare for travel?
When booking a flight, inquire about a wheelchair even if you don't normally use one as it can be a very long walk to the gate for a Parkie. Ask for an aisle seat so you can get out of your seat more easily. Inquire about a disabled toilet on board or ask a flight attendant if you can use the First-Class larger toilet.What about my medication?
If you don't do anything else, make sure you put some forethought into taking an adequate amount of all your medication, as well as a list of your medications and prescriptions signed by your doctor. Drugs are sometimes known by different brand names in different countries, and you find out the names used in your destination country before you travel on the EPDA website listed below.How do I find appropriate accommodation?
When my husband and I went to Paris a few years ago, we randomly chose a hotel because it had a nice name like "Le Camellia", but it was most unsuitable for a person with any disability. There were no rooms on the ground floor, and you had to carefully negotiate up a narrow spiral staircase with your own bags and find your room in the dark. There were no grab rails in the bathroom, and the shower was an iron maiden replica with taps designed to fall off, and jab you in the back. When my husband bent down to pick the taps and soap up, he got hopelessly stuck and couldn't grab anything to pull himself upright.You can consult the Internet (See below) for information regarding accommodation, public transport, attractions, access guides, etc. Also, the EPDA (see below) has a 'Flexicard' with this phrase written in 13 European languages. This, along with other phrases describing any particular difficulties you have, e.g., slowness or quiet speech, can help explain to others why you have special needs.
Are organized tours the answer?
Organized tours certainly make things easier, especially if they cater for the disabled, but don't just assume they will solve all your problems. Some tour operators are only concerned with getting bums on seats. On our trip to the Northern Territory, Australia, we had a company draw up a two-week tour package that included various activities. We found that there were too many activities crammed for my energy level. Some of the activities were totally inappropriate, even dangerous, for a person with a movement disorder, such as treks to the top waterfalls, where we had to clamber over huge boulders with a slippery, uneven surface. Thanks to my husband and the tour guide pushing, pulling and carrying me, I didn't break my pelvis on the way down.On many tours, we had very early starts. This didn't suit me as I move with difficulty in the mornings until my meds kick in. Hurrying just aggravates my symptoms and makes me dramatically slower. A Parkie friend of mine who just came back from a tour of Europe told me that at these times, she used apomorphine injections to provide a 'window of mobility' allowing her a half hour to get dressed, shower, etc. and get on the bus, etc.
What about driving holidays?
Driving has the advantage of allowing you to set your own pace and bring some of your necessary equipment with you (eg. a wheel chair, a fold-up walker and bed rail) When traveling independently, you need to preplan your routes and stopovers. Try to avoid traveling in the heat as Parkies don't function as well in extreme heat.Take your medication as normal or you could be very uncomfortable on a long drive. Some Parkinson's medications can bring on drowsiness especially after eating, so it's a good idea to share driving and take frequent breaks to stretch your legs. Arrange a disabled car sticker from your local council if you have trouble walking.
Should I take out travel insurance?
There are many different types of travel insurance available. You will need to decide what type of cover you require and check thoroughly that the policy you choose suits your needs. As well as the 'usual' types of cover, for example, flight delays and theft of belongings, there are other things to check when choosing an insurance policy. These include cover for medical costs for "a pre-existing condition".You may have to take out specialist insurance for disabled people that would cost more then regular insurance to be sure you're covered if you have to cut short your holiday for medical reasons.
What do I pack?
Packing is the bane of my existence and a time of great anxiety for me when I travel. I prefer using back packs to keep my hands free. Go for lightness, comfort, wrinkle-free items and ease of dressing. Use colors you can mix and match and dress in layers so you can peel things off when it gets hot and pile them on when it's cold.
So, is travel with Parkinson's worth it?
Undoubtedly, travel with Parkinson's is challenging. However, it's an effective antidote to the depression and social isolation that Parkies can feel. Travel renews your spirit, helps you focus on experiencing new things, meeting new people rather than the progression of the disease.
Helpful Resources for Traveling with Parkinson's:
- Holiday and Respite Care Guide 2006 published by Parkinson's Disease Society of the United Kingdom,
215 Vauxhall Bridge Road, London SW1V 1EJ.
Website: www.parkinsons.org.uk - For international travel service for the disabled covering accommodation, public transport, attractions, access guides, etc. http://access-able.com/graphical_index.html
- The EPDA (European Parkinsons Disease Association)
has a 'Flexicard' with the phrase:"I have Parkinson's disease.
written in 13 European languages - see www.epda.eu.com/flexicard.shtm
Please allow me time.
In case of an emergency, contact..."
This, along with other phrases describing any particular difficulties you have, e.g. slowness or quiet speech, can help explain to others why you have special needs.
Information about different medication names can be found on the EPDA website: www.epda.eu.com/medicationInfo.shtm
