My MS was diagnosed in 2000 which was a rude awakening to the new millennium.  When everybody else was worried about Y2K, I had other worries on my mind. In fact I can trace my MS back at least a further 10 years, to about 1990. So all in all I’ve been living with this disease for 32 years and one of the most difficult things to get to grips with, is the constantly fluctuating and changing nature of this condition. I still cannot believe sometimes, how weird some of the symptoms are and I find myself questioning whether this is really MS or something else? Mostly, I have to say, it is indeed MS!

Over the past 32 years I have become more and more disabled, particularly in the use of my legs. Even though one leg is still stronger than the other, neither are good enough for me to walk anymore so I am now a full-time wheelchair user, though I can pull myself up into a standing position for very short periods of time. I’ve been through the whole range of mobility equipment from walking stick, walking frame, collapsible scooter, and now wheelchair.

As an ‘experienced patient’ I would advise anybody newly diagnosed to get in touch with an MS specialist nurse in your area, and also the neurological occupational therapist (OT).  Alongside your neurologist, these two people will be your most frequent and useful contacts.

When the world was still normal, in those pre-pandemic days, I used to visit my family in Canada every year, sometimes twice a year. Late 2019 was the last time that I flew to Vancouver, (with a portable scooter) and on both legs of the journey, I fell on the aeroplane trying to get to the toilet during the flight. When I eventually arrived back home again in England, I decided that I would never fly again and that my days of travel were over.

Fast forward two and a half years to 2021, and my sister was going to come and visit me from Canada because Covid-19 restrictions had been eased. We were making arrangements for her travel when she said to me, “It would be so much better if you could come here, because then you could see everyone in the family rather than just me seeing you. Is it not possible to fly with your wheelchair?” I had not thought that such a thing would be possible because my wheelchair is so heavy and doesn’t dismantle like a scooter.  It does lock into place in my car and allow me to drive from my wheelchair, however, I had assumed that they would not allow it on the aeroplane.

Nevertheless, I began to investigate: and discovered that it is indeed possible to fly with your own wheelchair even if it is very heavy and not collapsible or even transportable in the boot of a standard car.

Firstly, when you get to your destination, wheelchair accessible taxis are a lifeline, but you do need to make sure that the height of you in your wheelchair will fit into the height of the accessible taxi. Not all accessible taxis are the same. It is worth knowing the height of you sitting in your wheelchair at the lowest possible position.

It is also possible to rent/hire vehicles that are wheelchair accessible although I couldn’t find one that I could drive, I did find a standard people carrier that my sister was able to drive, with me as a passenger.

And, most importantly, it is possible to get “hoisted” into your seat on the aeroplane from your wheelchair at the door of the aircraft. They use something called an Eagle Hoist/Lift, which is a very clever contraption that lifts you up (using a sling which is tucked behind you and then pulled under and round your legs) you are then lifted up and suspended going down the aisle of the aeroplane and finally lowered into your seat. There is another method where they use the same kind of sling to lift you up but then, rather than suspend you from the eagle lift, they (a team three to five people) put you in the aeroplane’s aisle wheelchair and then manually lift you up in the sling and lower you into your seat. All of this happens before anyone else boards the aeroplane and is attended by a trained team, who I found to be incredibly helpful, and kind. At no point did I feel in any way vulnerable or in danger. And the joy of being able to get to the other side of the world and spend three weeks with my family over Christmas and New Year was amazing!

Obviously, travelling as a disabled person needs some preparation and advance planning. But now I know that the airline itself, is not directly responsible for getting you from your wheelchair to your seat, and the reverse when you get to your destination: Rather, it is the ground-staff at the airport from where you depart and again at the airport where you arrive that need to arrange for your transfers.  This was the trickiest bit of the whole exercise, as you have to find the people at the airport who are responsible for this lifting/hoisting operation. At its best, the departure airport liaises with the arrival airport and coordinates that hoisting lifting. It is worth knowing that not all airports do have an Eagle Hoist, so the manual hoisting operation with the aisle chair of the aeroplane may be your only option. It is also worth knowing that the Eagle Hoist can only be used for economy class and economy plus, (seats in rows) it does not work in either business class or first class (where are the seats are in individual pods).

Being transferred from your wheelchair to your seat on the aeroplane is not usually an option listed on the Accessiblilty Section of airline websites. You do have to go through the process of trying to speak to somebody (on the phone) in the Accessibility Department of the airline, and then get them to arrange this for you.

Hopefully in the near future it will become easier to arrange this (as I am encouraging airlines to make the accessibility option more widely available), but at the moment at least I know it can be done and the world of travel has opened up for me again, in particular - going to visit my family.