How to make travelling with Friedreich's Ataxia easier

Long distance travel when you have FA

(Update: Friday 9/8/14: The following was written years ago, and the travel situation has fizzled out largely for me. Travel brings priceless memories, I only wish that I had done more of it. It certainly does require so much more planning when you are no longer weight bearing, but its possible, seize it and squeeze as many tantalising memories out of foreign travel especially, as possible. You'll be dead for long enough!)

I want this page to be concerned with the extra details needed for travelling when you have FA. What has really annoyed me, is the insistence by some airlines,that all wheelchair users must travel with an able bodied assistant at their own expense (naturally).7

Of course I can only talk from my experience of having FA, so I cannot relate to those who need oxygen, are in pain but who can still walk a bit, have bowel control problems or are paralysed, but with fine upper body strength. It is crucial to do your homework, and make the airline and your travel agent aware of all your unique requirements, well in advance. Have your GP write a a detailed medical synopsis, and make sure both your travel agent and the airline in question have a copy of it, whether they specifically asked for it or not.

This is to protect yourself, should things come to a messy end (read on for my nightmare experience in Heathrow) and ensure the airline cannot plead ignorance. Also I recommend having a camcorder, camera, dictaphone or other recording equipment in order to gather evidence. I hope your trip goes smoothly, but a good adage to go by is "plan for the best, but prepare for the worst".

There is no such thing as deciding to get a last minute quick/cheap flight, when you are a full time chair user. Especially when you have a progressive illness, which tends to fluctuate your mobility/physical needs. It takes advance planning for sure, but I think its not good to obsess too much (its meant to be a holiday after all). Say a few positive affirmations, and release the anxiety!
I am in a race now to travel, until the day when I get too decrepid. Off to new york city shortly, and I am really not thinking too much beyond actually getting there. Its a 9 hour flight (because of the shannon stopover) but we dont have to change flights. As far as possible, try to fly direct, even if that means paying more. If anything does go wrong, at least you are on your home turf, your mobile will work, no language barriers, and there's less chance of a horror story involving your chair being sent astray happening.

Responsibility works both ways, if you are not completely able to get to/use the onboad loo, then you have to use either an external catheter or pad. Some airline crew will not even push you to the loo (it seems to be the luck of the draw unfortunately, whether they are helpful or not). With the balance problems of FA, it is best not to even attempt to transfer more than is neccessary onto the onboard chair which has no armrests, and besides has no wheels, so you cannot operate it yourself.All this is not pretty, maybe even an affront to your dignity, but I prefer to view it as a means to an end!

I realise now, that I must have an attendent organised at the destination, to take care of the small everyday things like dressing/bathing/transfers which if ignored can quickly become big holiday wrecking issues.

Last ape Town, I had no assistant for the first weekend, and it was an endurance weekend with no showers essentially. For too long, I equated getting an assistant as a form of giving up, or even giving in to the limitations of your disability. Now I view the assistant as an essential engredient, for making the very most of your holiday. Sure, it takes getting used to, to having a stranger see you in your most vulnerable states, but these people are professionals, and can be excellent company as well.

I do not bring a family member with me on holiday, its a challenge I want, and travelling on your own forces you to come out of your shell, and be a bit more sociable. Most times it works, but it backfired spectacularly on me last September, when I had been planning a trip to cape town, via heathrow with BA. Read it, and see why!

This account was written immediately after the incident on sept 17th, while everything was still fresh in my mind.

"Its been an exhausting week. Part of me honestly wants to forget it quietly, but that silence will allow the possibility of it happening again to somebody else, and that thought is hard to bear. Even though I have been planning a holiday to cape town since july, when I eventually made it all the way to Heathrow, they refused me entry onto the plane, even though they have known my medical situation for months. BA are blaming aer lingus, and my travel agent (Club Travel) for not fully notifying them of my medical needs,even though I had to send medical certs and undergo a phone check by a BA rep before the tickets were issued.

For the healthiest of specimens, enduring 2 airports in the same day would be taxing, but for me to push myself around the airports of 2 countries in the space of one day, and innumerable security checks, was an uphill struggle, which had a conclusion, which left me shell shocked and speechless. It was the look of shock by the stewardess which lingered. The first thing she said to me was that "you're not going to make this flight" and I could see her worried look as she saw me balance on the airline wheelchair which had no armrests . Yes I did topple to my left, trying to turn around to answer a question from the man with my wheelchair, but I am very strong, and quickly salvaged the situation.

6It doesn't look like homework was done by BA on the fact that I have Friedreich's Ataxia (even though all certs were provided), and all that implies. It looks as if investigations were left at "wheelchair user"! Issues of safety are paramount of course, but everything has its own context, and if again you put forward the legal reasons, then maybe its an idea for passengers who need assistance to sign a liability waiver. I know I would have gladly signed one, rather than waiting outside the plane door on a cold evening, in a foreign country when I should have been in a plane bound for a long dreamed of, and planned for holiday!

I am not a litigious person, but have to speak up, in order to stop this happening to someone else. Why was my money taken so readily? Doctor's certs not examined, and questions asked at the front of a departing plane which I had answered ad nauseum before? Indeed I was so shocked to be asked these questions again, with fresh faced inquisitiveness, in combination with my speech impediment, that no words would form, and I knew that they had made up their minds. They told me that my luggage was being taken off. I truly was beaten down, and was torn between what had just happened, and the fact that I hadn't eaten since 3.

We finished talking at 11.30, after which I had to wait outside for half an hour, with my bus and hotel voucher. At midnight the dinner voucher is pretty redundant. I thought the hotel was a nice touch, but what was the alternative? Have me sleep in my chair? I listend in shock, as the BA duty manager suggested sending me back to Ireland to have a colostomy bag fitted, after which time my flights would be rescheduled, was a non runner. Invasive surgery doesn't happen overnight, and I only have 2 weeks leave.

It didn't seem like a great holiday to me to spend half the time (at best) in hospital, and a short revised week in cape town. I am aware of the reluctance and hesitance which lawsuits have brought, but again I needed assistance only getting to, and not using the toilet. It is impossible to manually push the onboard chair, so even if the person can briefly stand, they still need help getting from a to b, but any sort of assistance seemed to be out of the question for the crew of this particular flight. I have no bowel problems, and was certainly not going to overeat during a long flight, so that was not going to be an issue.

3 years ago, during my BA flight to Johannesburg, the guy merely wheeled me to the loo, put a blanket up behind me (as I could not fit in totally), and ….. Was I really that blessed with the extraordinary helping efforts of that particular crew? Compared to Sunday's crew maybe………….. Which leads me to ask if it was known since july that a passenger using a wheelchair because of friedreich's ataxia, was going to be onboard, could there not have been one or two strong helpful guys on the rosta? The crew seemed to be mostly female. I feel very let down by BA. I don't know if I will physically be able to make a trip like this in the future, and now I feel so mentally battered, that I sincerely don't know if all the preparation and effort would be worth it.

Sept 17/9/06 Wednsday 20/9/06 I just said to my boss in work today (went back in, otherwise I'd just be at home mulling over all that has happened). I said "isn't it ironic that in this age of hyper caution and extreme safety measures, that I am refused entry on safety threats. He bluntly said "You weren't a concern just an inconvenience" I thought that was a perfectly considered response.

6+ My dignity was of no concern as I was at the airplane door cold and isolated, and having to talk about toilet issues and colostomy bags with complete strangers. I was never personally addressed by the captain
, he just gave me an indifferent look, at this person before him with inward facing feet and a floppy posture who was clinging onto this onboard chair

My safety was of no concern as I was put on a bus at midnight alone and shocked, trying to find a bed for a few hours with no toiletries or change of clothes That is no way to treat people! I told the BA rep in july, that the help I needed was for someone to hold the chair steady to allow for a safe transfer. They refused to do even this.

I know they don't have to, but people come with different needs, and as the men pushing me off told me "that it all comes down to the attitudes of the crew and captain on the day. We have seen many cases worse than you, and sometimes even other passengers are more than happy to help" I know hindsight is 20/20 but I should have asked one of the hundreds of fellow passengers if they'd mind helping me down toward the loo. I'm sure they would have had a better attitude
I don't need, and can't justify somebody to hold my hand on the plane, much to BA's incomprehension. So all the planning has been for nothing and I fear this disaster will have lasting effects. I am still missing luggage, need a break, but now know even holidays can drain you;. I hope this episode has a redeeming conclusion. This was a major holiday, with a lot of time and planning invested in it.

Update Thursday 21/9/06: You will not believe it ( I had to phone up twice to make sure. Apparently my luggage was taken off, but they were put onto a cape town bound flight the next morning. It seems outrageous to me that I was refused entry out of safety concerns, but my luggage ( a suitcase, one big and one small sportsbag) was overlooked! Someone has their priorities mixed up! My insulin and everything bar the kitchen sink are in those bags, so I hope they get returned soon.

Update:24/9/06 2 bag arrived last night and the smaller bag was back on Sunday 24/9/06 minus my digital camera and broken shaver. This bag had all my insulin, an was firmly attached to my lap all day. I thought I would be swiftly reunited with it, but apparently my bags were put on 2 separate cape town bound flights the next day. I am loathe to keep going over this nightmare, but BA are digging their heels in, and even though its very much David v Goliath, I have to try and get my story out. I should be relishing all the sights and marvels of this unique country after my months of saving, planning and preparation. Instead I am back, sooner than expected in rainy Ireland, with the batteries on low and uncertain about future travel plans. If all this hassle comes from a "holiday"…………I was in Egypt this may, and this was meant to be the year that I would travel, but events have conspired against me"

Lets just say, I look back on this episode now, as a painful learning curve. I have learned a lot. I am not angry with BA, but would be in no hurry to fly with then again. I am going to new york with delta, and I'll let you know how I get on. Yes mistakes were made on both sides, and I never got one cent out of my travel insurance. For those of you, who smugly think every eventuality is taken care of once they pay for extra insurance, THINK AGAIN! Insurance companies do not make money by paying out. Also an interesting point to note, is that no travel insurance covers a lost or broken wheelchair. They are put into the same category as children's buggies, so you have to ask yourself, just how covered are you?