Travelling with Parkinson's

Group Publicity Officer, Gregg Faulkner, recently enjoyed a six-week around the world holiday with his wife Sue and provided the following observations and suggestions.

During the course of my holiday I learned quite a bit about travelling with Parkinson’s Disease, and I learned a few tricks that made life easier. Happy to share them with you.

First things first. All of us living with PD take daily medications of some sort. Getting your medications organised for your trip is an important starting point.

My daily medications are:
3 x Madopar capsules
2 x Sifrol ER tablets
1 x Azilect tablet
1 x generic Paroxetine tablet and
1 x Multivitamin with fish oil capsule

The first step, then, is to make sure you have current prescriptions for all your meds to cover the period of your travel. Also, it is a good idea to ask your doctor for a letter of authority listing your prescribed meds. This is routine for GPs and they will usually provide it for no charge.

Step 2. A couple of weeks before your departure get your pharmacist to provide your prescribed meds to cover your expected trip duration plus 50%. For my trip of almost 6 weeks, I asked for 2 months supply of each med. Again, this is routine and your pharmacist will have no problem providing up to 3 months supply on request (and with appropriate prescriptions).

Customs laws in most countries – certainly in European, North American, modern Asian and South Africa – permit importation and carriage of up to 3 months supply of prescribed personal medications (so long as you carry your prescription and a letter of authority from your doctor). By the way, I’ve never yet been asked to show the letter or my scripts.

Step 3. Divide your meds into 2 sets. One set, containing 2 weeks supply of each medication will be packed in your carry-on luggage for ready access. Your prescriptions and letter of authorisation should also be packed with these meds in your carry-on luggage. The remainder of your meds should be packed securely in a waterproof bag or pack within your checkable suitcase.

The reason for carrying 2 weeks supply in your carry-on is to provide you with recovery time should your checked luggage go missing. At the end of the first week of your travel, and each week after that, re-load your carry-on supply of meds from your luggage supply. That way you will never have less than 1 week’s supply on hand.

A problem with us Parko’s is that, especially under stress (like travelling), we can become a little confused or vague. Did I take my Madopar yet??? So we need a bit of help to ensure that we take our daily scheduled meds. I found the best way for me was to start my morning, first thing, by decanting into a small zip-lock plastic bag my set of meds for the day. I then carry the little bag in my pocket, so my day’s medications are always with me.

In this way I know that by the end of the 24-hour period my plastic bag should be empty. Did I take my Madopar? A quick check of the bag answers the question. So, obtain a few small zip-lock plastic bags for yourself.

Interestingly, over 6 weeks and in 8 countries, no one ever questioned me quite openly taking tablets and capsules from the bag in my pocket.

Step 4. Consider the time shifts you may experience. Travelling to Europe in a westerly direction will extend your travelling day from 24 out to 40, or so, hours. Travelling east to USA will compress your day into about 14 hours. Don’t worry about the day / night thing. Instead, focus on elapsed time. If you normally take a med every 6 hours, then continue to do so. If the 6 hour point happens to be the middle of the “night”, take the med anyway.

I called it “night” because on an aircraft, day and night seem to be at the whim of cabin staff, so don’t let it bother you.

If you take a tablet daily, then take one roughly every 24 actual elapsed hours. Ignore time zone changes for the moment.

Step 5. After you get to your destination, set about adjusting your med consumption to match your usual daily routine. This might mean being a couple of hours late or early with a med for a day or so. With the usual Parko meds this won’t cause any grief. Try not to miss a daily med altogether but, if you do, don’t worry. Just take it as soon as you can, but don’t double-dose to try to catch up.

Most of our meds have some “umbrella effect”. That is, they will last longer than the usual between-dose period without any significant problem. Similarly, a shorter than usual period between doses will not generally cause any “over-dose” problem, but try to stay as close as you can to your normal pattern.

Step 6. Consider supplementary medications you may wish to take with you. Some that I have found very helpful (though thankfully I've had little need to use them) include:
Motilium - prescription required - useful anti-emetic/anti-nausea
Frisium - prescription required - helpful relaxant/sedative effect
Ibuprofen - painkiller/anti-inflammatory (buy the generic and save)
Betadeine - antiseptic
Ginger tablets - motion-sickness settler
"Sea Bands" - anti-nausea device for sea and air sickness, Works!!!

And, of course, a compact first aid kit is always a travel essential.

Step 7. I’ve kept this one till last because it’s a bit of a sensitive issue. Parko’s causes most of us to have issues of one kind or another with bowel and bladder. Many Parko’s are concerned about travelling for fear of being caught-short.

There is no simple answer to this one. (I wish there was!). The best advice I can give you is as follows – and this is based on my experience.

First, well before you travel, try to establish a daily first-thing bowel movement habit. For me it’s about half an hour after breakfast (a cup of coffee with breakfast helps to get things moving). When you’re travelling you can then schedule your early morning like this:

Get up – take first med – shower – dress – go to breakfast – return to room – toilet – ready for the day.

A few golden ruled for Parko’s travellers follow:
• Never miss an opportunity to have a pee (or more).
• Don’t wait until you’re desperate. Go early and go often.
• In most European countries there is often a fee, usually 50 Euro cents, to use a lavatory. The trade-off is that they are usually well cleaned. (For this reason we often refer to a 50 Euro cent piece as a “one pee coin”.)
• Avoid drinking too much liquid – especially caffeinated beverages or beer – while you are away from “home base”.
• Hotels, restaurants/bars, visitor centres, theatres, railway stations and airports all have toilets available. Don’t be too proud or embarrassed to ask.
• Plan ahead. Think about where you’re going and plan your toilet options.
• Tourist coaches have an on-board toilet (they will stress to you that it is for emergency use only, but if you need it, use it.)
• Trains, ships and aircraft have toilets.

In summary, I’ve discovered that extensive international travel is not only possible for a Parko, but it is great fun – so long as you do a bit of planning and take basic precautions.

Get out there and enjoy yourself!

NOTE: The above advice was provided as general information based on personal experience. Each person is unique. If you have any doubts or questions seek advice from qualified medical personnel.