Holiday to America with DMD and a ventilator

I would imagine a swab test would be wiping a cloth over it and testing said cloth on a machine, its like the drugs test they do!

can I ask what company your insurance was with. I was quoted £1800 for a norway cruise.

I don’t know how I’ve missed all these posts Robert! Shame about the problem of pushing your manual chair as it sounded like your holiday plans were almost there! Couple of ideas, how you thought of looking for a volunteer (a younger fit one!) you could take? Put an appeal out through websites like this and Facebook or advertise, you never know! Perhaps a charity could fund someone? Have looked into renting a powered chair in Florida at all? If you want to go somewhere hot try the Spanish place I go too, they’ll could provide someone to push you about! Their website is http://www.laspiedras.co.uk

Also next Muscle Group meeting at Falkirk football stadium on Saturday 19th May, 1pm – 4pm. We hope to show Jon’s film ‘A Life Worth Living: Pushing the Limits of Duchenne’, in which I’m in too! Hope to see you there.

@catatude wrote:

can we moved the muscle group meeting to spain pretty please.

Now that is creative thinking .. a forum symposium, somewhere warm and sunny, with peeps to fetch and carry …

Hi, we flew with our son who has a congenital NMD (similar to DMD) in February this year. Virgin are the best to fly with. We actually upgraded to Premium Economy and although expensive it was worth it as the seats are wider and way more comfortable for the 9 hour flight which our son tolerated well.

They will block the medical seats for you which should be accessible from an aisle wheelchair and are at the bulkhead. Instead of a leg raiser, you will be given a foot block to put your feet up onto, and these are quite comfortable, but you may need some extra pillows and support under your legs or perhaps even two foot blocks – but you will have to arrange this before flight with special assistance and you will have to let the crew know on boarding. If you book a long way in advance, you will be able to get a pretty reasonable deal. For example Economy seats cost £580 and Premium Economy cost us £860… the longer nearer the date you book the more expensive they get. Also try to fly on off-peak times and days for cheaper flights. My son requires oxygen for flights – you will need to have a fitness to fly up to 3 months before you go on holiday and to assess whether you need supplementary oxygen during the flight or not, although probably not if you are just using your ventilator but they can check this too. This should be a free service provided by your normal respiratory team. My son only required to use the bipap ventilator on the return flight (overnight) with no oxygen and that kept his oxygen sat levels very high – we did have oxygen booked, but they only have a tube with nasal prongs, so we didn’t have a spare bubble tube with us to connect to my son’s bipap machine. You will have to remember to take a connector tube and your own spare bubble tubing for fixing oxygen to your ventilator (and if you don’t do this already). Regarding life of the batteres – some airlines actually have plugs on some of their newer aircrafts, but these i think are only in first class. Certainly worth an ask when you book your flight. We took 2 x battery packs (each lasting 8 hours) and which you should be able to borrow from your ventilator provider if you don’t have already (ours is Brompton Hospital)… These will work in the US too, and if your bipap machine is not US compatible (110w), then you can actually use it through these battery packs which can usually be switched over to US voltage.

Virgin were fine about the machine being used on the plane – all they asked us when we got on the flight was ‘has this been cleared’ – which it was. make sure that you give the booking clerk in special assistance all the details she needs when you book your flights and you will need a letter from your doctor to say that you are fit to fly.

When you come back through US customs too, be prepared for them to remove the bipap from you and check it over very carefully – they were absolutely paranoid about our son’s ventilator and batteries. They are also very funny about you going through security with a carer, even though my son is only a teenager at the time and totally dependent, they whisked him off to a separate area to be checked and asked him to raise his arms etc!! They were lucky that he can a little but it made me wonder how someone else might cope who was less able to assist! Not the friendliest or most helpful.

We hired a pressure mattress out in the US as ours wasn’t compatible with US voltage, and very bulky to pack. Here are the details of the guy who arranged for it to be delivered and picked up from our hotel in Florida. I believe that he will also rent out ventilators too so a good person to know when you are away. Our pressure mattress cost about £500 to hire for 2 weeks, very expensive but meant that our son was comfortable while we were away.

We even found a company who will deliver WAV to Miami or Orlando airport for your holiday.

If you search for Florida ‘pool with hoists’ you may find some totally adapted villas too.

We really hope you make it to Florida, the weather and air is so wonderful there, and being in the pool every day did my son (and us all) the world of good. the flight is the trickiest bit, granted, but while you are in US they are so helpful and can’t do enough – quite shocking when you come back to the UK and everything is the complete opposite.

One last thing – the lifts back down to baggage in heathrow for us were tiny- we could only just fit my son’s chair and one of us in them, so don’t know what happens if you have a bigger powerchair.

Skip Scribner
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