I vividly remember that day in June when my world was turned on its head. As I walked out of the consultant’s office I was the same person who had walked in but my view of the world had changed forever. As a father and husband my immediate horror was the possible inability to support my family and to live our dreams. The fear and uncertainty was so difficult to comprehend that for the most part I refused to discuss anything related to the diagnosis and pushed my head well and truly into the sand. For many months I told no one. As long as I could mask the symptoms I carried on as “normal”. I refused to read any related literature, never “Googled” my condition and certainly would never have sought out an online PD chat room! Instead I worked quietly on a food and exercise diary and challenged the prescribed drug regimes.
As time went by and it became more difficult to physically keep up the pace I started to trust those close to me and share my diagnosis. I was shocked at how it helped telling people, and amazed at the support from family and friends once they knew what had obviously been troubling me. Being inspired by that support and anticipating the need for the same in the larger community I began to mull over ideas to create a self help website. I wanted to share my experiences and guide others using the knowledge I had gained through those many months of quiet personal research.
These two paragraphs have been ‘copied and pasted’ from a press release in April last year when Parkinsons.Me gained charity status. A lot has changed since my diagnosis in 2013 and I believe we can all benefit by sharing our individual experiences.
So today I want to talk about Travel and Parkinson’s … I’ll cut to the chase, gone are the days of spontaneously jumping in the car and driving off. The vast majority of people don’t even consider what a privilege it is as they drive off and probably even moan about the traffic! So over the next few weeks as we head into the holiday season I’d like to discuss the various forms of transport.
Today I’ve chosen flying and would like to share my recent experience. Chatting with a good friend recently he invited me to there holiday home in Bordeaux. Great, I thought a few days away from the ‘norm’ and a chance to stand on my own two feet. A few days before setting off for Bristol airport reality dawned. How will I manage on my own … suddenly I was dreading it. Shall I call my friend and apologies, I’m sure he’d ‘understand’. Several days of increasing self inflicted stress later and I decide to ‘man up’ and go.
So the night before departure my bags are packed and I’m ready. An early night was required due to a 4am start. Wait 4am what about my meds? I decide as my friend is driving that I’d stick to the usual schedule. Sure enough I’m picked up as discussed and yes it feels weird heading out ‘on holiday’ at 4am unmediated, but we’re on our way. We chat in the car and soon we arrive at Bristol airport. Here’s my first tip allocate plenty of time, sounds obvious but it eliminates the vast majority of stress. There’s nothing worse than ‘running’ around unmediated trying to catch a transport link or an appointment etc. Secondly we dropped off the bags at the departures ‘drop off’ and as I waited at the terminal my friend parked the car. Perfect much less walking involved … now I know this sounds strange but hear me out. Wearing one of my P.Me branded tshirts or hoodies in highly populated places gives me a huge confidence boost. Why? Simply because if I’m ‘off’ the general public read the print and hopefully make the connection. This in turn helps me to relax and in turn builds my confidence. Thirdly as we have plenty of time and have checked in the night before we can head straight for security as we only have hand luggage. Four pack your medication with your liquids in or in a separate clear plastic bag. Also consider taking your latest letter from your consultant, packed with your medication (it just helps speed the process up). Five I know it’s obvious but don’t pack your medication in your checked luggage. Six and this is important. If your traveling alone please note that your ‘carry on’ needs to be light. You must be able to stow your own bags in the overhead locker the cabin crew won’t help you. The alternative is being small enough to push it under the seat ahead of you. Both tasks that could be tricky when tired / unmediated. Not wanting to sound like your Mum but, use the terminal bathroom before boarding. Also request an aisle seat it makes the on board facilities easier to access if needed. Finally we always try to board last, nothing worse than sitting waiting to take off.
So that’s it the most important commodity is allow extra time, plan ahead and you’ll be relaxed and ready to start your holiday from the moment you arrive.
We’d really appreciate it if you would share your experiences and thoughts. We’re currently building a new web site and we plan to publish some information guides. Please email us with your experiences and we will include them into our Wikipedia style guides. Travel will be one of the first to be published as we head into the holiday season. So please consider all forms of transport and any experiences good, bad, big or small it might just make the difference to another family traveling with Parkinson’s. Maybe you have some tips on medication and jet lag.
Please email us at firstname.lastname@example.org thank you for your time and in advance for sharing and helping the Parkinson’s community. Remember we are #StongerTogether and if we #UniteForParkinsons our collective experiences could just have a positive impact on someone else’s future.