Myles shares his experience travelling to the land down under

Updated: Feb 7


Myles who has MPS I writes Travel about his experience travelling with an MPS condition and offers some helpful tips and advice.


Why Australia? The simple answer is family.

Many years ago, my uncle fell in love and moved over to Australia to spend his life with my Auntie Joyce. I have seen him occasionally when he visits the UK to take part in family events but noticed few of my family have ever ventured to Australia, so I had it in my mind that I would visit them. I didn’t just wake up one day and think I’m going to blag my way across the world. Back in the early days of the MPS Society I went on two adventure holidays, the Society helped me go to Florida with the national holiday fund and then Venice. I went to Florida a further two times after that to push my independence a bit more. I have also studied travel and tourism and as part of my studies I travelled to France, Gran Canaria and Belfast. So I had built up some experience.

Travel The key is to plan in advance, I started by thinking about what my needs are, this can vary between conditions and the type of MPS disorder we have. In the past when I have travelled and I went to Florida in 2000, I took my Manger Freestyle wheelchair which the MPS Society managed to get for me, I booked with Virgin and arrived in Orlando to find out my two wheelchair motors had been damaged in transit. The rest of my holiday was spent with a hired wheelchair, my friend was able to push me around and I was grateful to my friend but I hated not having my independence. But now thanks to enzyme replacement therapy and Slimming World I’m able to use a rollator, I can walk for a bit, sit and repeat until I get to my destination. So my rollator needed to go with me.


Assistance required at airports At airports a disabled person can ask for a disability assistance lanyard from the assistance reception desk, this indicates to staff that I may need some help when using my rollator. I prefer and like to use my walking frame but I can’t manage without it, so when boarding it seems I have two options use the rollator to the boarding gate and ask the staff to load the aid for me whilst I board but being not 100% sure they would, the second option is to put it through for loading with my luggage which means needing wheelchair assistance from check in to the gate. I opted for the latter so whilst I was being pushed around in a wheelchair at the airport I spent hours in empty spaces.

On my return route when I was in this predicament again the airport assistance took me to a cafe to have a drink and left me, once I finished my drink I was needing the toilet and the nearest one to me wasn’t in walking distance without having my frame, I asked the manager of the cafe if they had their own toilets who said they didn’t have one but she would find the airport assistance and then gave them a good talking to about leaving disabled people in the lurch. Eventually I was taken to the toilets! Looking back on this now I would have benefited from taking my rollator to the gate rather than putting it through with my luggage, but you don’t learn these things until you do it.


One very important bit of advice I will give here for those who do need assistance, get it booked in with your flights when you first book, but also double check with the airline you are booked with at least two weeks before departure that the assistance request is confirmed. Two weeks before my departure I had this nagging feeling something was wrong and I went to my travel agents and asked them to check it for me, they told me not to worry but I strongly insisted that they check, turns out my instinct was right the assistance wasn’t in place and it had to be re-requested.

In order for me to go anywhere with unshakeable confidence I need google maps, I was staying with my Uncle who was going to show me the sights, but not for my whole stay so I would need to go places on my own. Luckily Uber was available in this part of Australia and they also have a OPAL CARD system in Australia which is brilliant.


You can purchase the opal card from a local newsagents and simply keep topping up the card with money. They can be used on Sydney ferry boats, trains and buses and just like a oyster card system it was swiping at the start and end of your journey. You can setup the card via the phone app to check on your balance and add funds online but you will need to register with a Australian postal address.

Communication There are WiFi points in Australia, but if you are like me and want to have a constant connection. I was luckily given a spare iPhone from a family member, and bought an Australian pay as you go sim card with as much data as I could find on my budget and turned that iPhone into a mobile hot spot which I could link my own phone to. I took a backup battery with me, I was going to take a lot of photos and google maps can drain your battery power quite a bit. However when flying with backup batteries, keep the battery in your hand luggage, not your suitcase.


Travel insurance £165.68 it wasn’t cheap, but after a bit of communications between myself and the travel insurance company, they eventually stated they would cover me. I have internal heart monitor that they were worried was a pacemaker and they were on the verge or turning me down when they got the information of my heart monitor and said I was suitable to cover. As much as the cost was expensive if unforeseen medical incident was to ever happen it’s a small price to pay compared to what it would cover.


Myles

We are the only registered charity providing professional support to individuals and families affected by MPS, Fabry or a related disease in the UK.

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