Travelling with PMA/ALS/MND
One of the questions that arises soon after being diagnosed with any motor neuron disease is: “How will it affect my ability to travel?”
When I first got my diagnosis back in October 2017, this was one of my primary concerns. My family is very spread out across the world and my wife and I love to travel (we met in France). At that time, I was just starting to adjust to walking with a cane and found one called a flipstick which converts to a seat on the fly.
In Nov. 2017 – Jan. 2018., I spent 2 months travelling about Europe by air, car and train and foolishly insisted on behaving like an able-bodied passenger. As a result, I arrived at my destinations tired and stressed. During those 2 months, my legs deteriorated considerably, perhaps, at least in part, because I asked more of them than they were able to supply. By the end of my trip, I was starting to think that it might be my last!
Finally, obstinacy gave way to practicality and comfort. My most recent trip to the Caribbean was so much better once I registered for assistance with the airlines and I allowed my travel companions to take over caring for my luggage and other details. On the one airline, LIAT, where we had omitted to request assistance, they noted my struggles climbing aboard and had a wheelchair waiting for me as we disembarked.
My main hang-up was that I didn’t want to appear lazy (I look as though I am still fully able-bodied). Also, I worried about losing my precious independence. I realise now that both of these were a hindrance. Friends and relatives and even strangers are only too willing to help. We pALS have enough to deal with without adding additional roadblocks for ourselves.
In the picture above, you can see my wheelchair waiting for me as we disembark in Bridgetown, Barbados!
Although the assistance offered by the airlines is far from perfect, they do try. Be sure to check with your airline or travel agent to discover what options they offer for the mobility impaired. To those who are nervous about travelling with PMA, I would say: Go for It!
P.S. There is a Facebook page dedicated to Travelling with ALS and most of the information, support and advice offered is applicable to Progressive Muscular Atrophy. There is also a great deal of information available on the ALS section of the PLM Forum