I went along to the Tour de France stage finish in London, and as it was the first time I had been there since I developed my ataxia found the whole experience very difficult.
I must admit I didn't expect to have any problems with getting around, having been there many times before, though the public transport infrastructure was much more difficult than I had imagined. Apart from the very long escalators and flights of steps I discovered the greatest horror of them all... the travelator, basically a moving pavement often found at airports. This shiny aluminium construction seems to be moving in several directions at once and the hand rail moves at a different speed to the bit you stand on. I quickly realised I was in for an uncomfortable journey so attempted to actually walk on it which was a big mistake so I just clung on for my life. I reached the other end shaking!
Apart from the physical difficulties, the underground was excessively hot, stuffy and overcrowded though two people did offer me their seats on different trains.
I returned home somewhat frazzled, dizzy and fatigued and woke up in the early hours with the mother of all coughs- much the same as when I first became ill- compulsive, irritating and somewhat productive. This has eased off a little now, though I've still had to call in sick this morning.
I read a report in the Evening Standard on the way home from London yesterday that said the NO2 levels in Oxford Street are the highest on earth, worse even than the likes of Beijing and Istanbul! I didn't notice it at the time but the air did seem much cleaner when I got home to Oxfordshire...
Patsy said:
Well done you. I can relate to everything you say. I prefer the lift in Sainsburys!
I find air pollution affects me like that too and dont know how I ever managed to work in City of London for most of my working life.
It's hard to explain to those without ataxia, just how it feels to experience travel but you have hit the spot.
Hi to both of you,
I’m afraid that London is not the healthiest place to live, with Ataxia giving us a weak immune system catching anything is par for the course.
My brothers and sisters also have Ataxia and usually end up on antibiotics after visiting! It’s sad to say that it’s made easier to travel if your wheel chair bound. I find I’m just treated like one of the walking wounded. I also find it a pain now explaining Ataxia to people so just say I have MS. They ( people) recognise that straight away and you get a better response. I don’t have enough brain matter left to waste it explaining myself each time I venture out!! Lol
Best wishes to all
Anne from East London
Last week, my fiance who has ataxia and I had to take the train into Washington DC. The very long walk to the train was unexpected and difficult - however, a very bothersome fact mentioned was that the handrail went at a different speed than the stairs on the escalator. It was very uncomfortable, he concentrated very hard and hung on as best he could. We decided - in the future - to make the necessary disability arrangements in advance before attempting a train again. This was an all day, very exhausting trip - but it is one more item off the "bucket list". Time well spent.
Dear Julien, Anything that moves throws me for a lope, as coordination and perception is highly compromised with ataxia. I can no longer do escalators, up or down, as the handrail moves differently than the stairs (at least in my opinion...,ha!). and, yes, those "moving" walk-ways are a HUGE challenge! Kudos to you though, for going in spite of it all! Glad you had fun! Even with ataxia, we have to continue to do things and overcome the obstacles the best we can! ;o)
I am Bira's wife. We have travelled on the train and underground a few times. I found that people don't give up seat for my husband as he can walk, a bit wobbly though. I don't blame anyone as he looks fine as if nothing is wrong with him but standing in the moving train is very uncomfortable for him. If there is a seat I give it to him and carry any bags that we may have. People look as if to say that he should be carrying the bags and give up his seat for a woman. My husband finds the situation very frustrating.
I do not live in the UK, live in the states. I find traveling by air quite straining. I use a wheelchair now and the airports have folks to push you around. Getting through security was a nightmare. The flight really affected my ataxia symptoms. I was glad I didn't have to get to one of the planes bathrooms. I was a bit embarrassed on arrival at the airport in Virginia, it was late at night, the airport building had closed for the night. The plane stopped on the tarmac and folks had to disembark down steep stairs. I simply could not manage. They ended up taking me off with a cherry picker. Its funny now but was not at the time.
I had an enjoyable day out, though am slightly disappointed that I can no longer easily do something that I used to so enjoy. I guess it won't stop me going again, though I will surely go with someone else and make more precise travel plans.
On slightly different note, I have found that moving patterns, especially those moving in different directions such as on a travelator or escalator cause my balance to go out of the window far more than the actual movement involved. I have to cross the road if I see a low sun shining through a gappy fence... :o(
I was in London, for meetings, on the same day, and YES it was busy !
As a wheelchair user I use the RED buses all the time. Plan the journey on-line and use the TFL app. on my phone.
London underground (Subway/tube) is a defo. NO GO area, for the reasons you state - Very crowded- hot, people rushing (knocking into you)
I dont find travelling in London too hard (probally as I am there so often (Weekly)
but I am very aware that it is FAR from ideal and not for everyone,
the extra FATIGUE, from being in a very crowded place is a major factor us Ataxians (indeed any disability related condition) has to include in our daily schedule.