I love summer not just because my birthday highlights the beginning of the best season where the days are long and the possibilities seem endless. But, because I always seem to rejuvenate during this time of year. As I get ready for my first real trip of the summer after an exhausting year, it occurs to me that since I have developed PD it takes me longer to pack my medications than it does my actual clothes and toiletries. We all know PD symptoms can vary with stress, weather conditions, and other variables like sleep. Therefore we have to be prepared for the not so good days particularly when far away from home and even more if out of the country.
As I had described on a prior blog “Tips & Tricks: Traveling with Parkinson’s Disease” always carry with you a complete list of medications (over the counter, natural supplements as well as prn medications).
You should also have your doctor’s phone number handy along with a letter stating diagnosis and medications needed including name, dosages, and times to be taken. As a girl scout I guess my motto is always to be prepared which means making sure that ALL of your medications fit into a small carry-on luggage that you can keep with you at all times. In this carry-on keep an extra set of clothes, undergarments (this includes disposable undergarments…there are many to choose from recommend depend because great variety for both men and women), snacks, and water (which can be easily purchased once go pass security.
- Especially when traveling by plane during busy season or to certain regions of the country such as some famous ski resort areas even in the summer, they have a tendency to be delayed which may result in luggage being misplaced during trip. In Aspen since it lies in a valley surrounded by mountains, the departure of flights is very much dependent on weather. This was one of the first times, I experience crew talking about weight of plane in to take off safely. This means that you may leave but not your luggage necessarily. Believe me, it is easier to change clothes than have to wash clothes in a hotel or worst in an airport bathroom. If possible carry sleep wear (best something silky which allows for greater mobility at night). I can’t sleep in regular clothes. But, if there is no room in luggage, do as I do travel with extra comfy clothes like pants with elastic band made of combination Lyocell and spandex (and some cotton) because these will allow you to move with ease, not wrinkle, and is odor absorbent as well as breathable. The last two qualities are extremely important since a lot of us with PD tend to perspire especially under duress.
- When booking a trip always ask for wheelchair assistance even if you end up not using it. This will give you peace of mind especially if you happen to suddenly need one because meds have worn off unexpectedly. Having a wheelchair available comes in very handy if connecting flights happen to be in opposite ends of the airport or if luggage retrieval is several terminals away.
- Don’t get in a hurry. Pace yourself. Give yourself extra time to get to destination (e.g. Airport or ship boarding)
- Don’t make changes to your medicine regime on the day of travel or while on vacation since you don’t know what kind of side affects you will experience.
- If you are going to get a cooling vest, as I am carrying one for me and my niece who has medical condition requiring skin to stay cool, Don’t wear it while going through security. Guess what this vest looks like on X-ray machines? Something akin to wearing a bomb strapped to your chest is the appearance of those gel packs next to your body inside the vest. If you don’t want to cause a huge incident video- taped and posted all over the media take the vest off. Also best to bring a doctor’s note to avoid confiscation by the TSA. The gel and filling may make them uneasy as well.
- Don’t be ashamed or proud to ask for early boarding. Don’t be afraid to let the crew know your condition in case you may need assistance with meds etc. during the flight or out to sea.
- Further, make sure to bring a back up to your cane. Do you know how many times my father left his at restaurants, hospitals, public bathrooms, etc.? It’s good to have a ready replacement.
- Although your primary walking assistive device is not a cane but a quad cane or u- walker some places are not as easy to navigate like small narrow brick streets of New England or some European countries. In these cases a walking stick or cane may be an alternative option which will allow you to keep touring or enjoying your trip. In my case, my large umbrella always serves me as a walking assistive device when traveling. This way I am ready for inclement weather due to rain or bad terrain. However, the umbrella must be a sturdy to sustain your weight and also handle severe winds up to 55mph. This one device also helps to provide shade and keep you cool when outdoors. Here is one link you may find useful www.innovagolf.com
- If you depend on scooters for mobility look at place of destination to see if you can rent one or one is available to you which will make your traveling much easier. For instance, I have been told that in France, wheelchairs are now available to rent at local pharmacies. In Italy however, when I was there only 3 years ago, I found it extremely difficult to navigate at times as a person of disability. Any person using more than a cane would find little to no support in most places including big cities like Rome. Taking tours can be more than a challenge since most places are not handicap friendly (Made me appreciate the commodities and privileges we as Americans take for granted at times, even when cities are not as handicap friendly here in the States- they are superior to many European countries in which I have traveled). Wheelchairs are not easily available in a lot of countries.
- While in Rome, I felt extremely bad for this one person on a motorized wheelchair and her daughter who were tour with us. Before they boarded, the daughter asked our guide if the place where we were going to was handicap friendly otherwise they would stay. The guide without missing a beat said, ” oh yes, we have elevators!” Needless to say, this was a large misrepresentation of the truth! As soon as we got to the gardens there was a large steep stairwell. I saw the disappointment and frustration in this family’s face. Seeing the anger the tour guide said:” don’t worry once inside there is an elevator! Turns out the elevator only went down two floors which did not even cover the entrance of the beautiful gardens …even myself could only see about a fourth maybe less of the spectacular scenery because the stairs were so steep and winding down forever; I was afraid I would be stuck at the bottom and unable to climb back-up since I was already experiencing extreme weakness.
- Make sure you do your research ahead of time and talk to other people that have traveled there before going.
- Wear sun protective clothing. We are predisposed to melanoma and UV rays can go through clothing especially bathing suits. Wear a sun protective hat and if you plan on being out in sun and beach may consider this link: http://www.coolibar.com/ Be aware that some medications like Azilect also make skin more sensitive to sun and if prolonged exposure can lead to rash.
- Also, remember that sitting for a long time in a plane can cause ankle swelling this is aside from the fact that some medications like NEUPRO, Azilect, Amantadine are known to increase leg swelling especially in women. Since the combination can lead to increase water retention it may be wise to get compression stockings to avoid DVT’s (clots) and improve blood flow. Look at the following link: http://www.tommiecopper.com/?gclid=CNbf0MmdwsYCFQtqfgodZLYC8g Also talk to your doctor about diuretics (water pill) as a prescription if this is a severe problem for you.
Now that you have everything in order- you are set to go! Have a great trip & Happy Independence Day everyone!
“Life begins at the end of your comfort zone!”