WorldvsMS challenge and The Amsterdam HACK
The WordvsMS campaign is an initiative that had been setup to give a voice to people with Multiple Sclerosis. The campaign has asked people with MS to list their challenges in everyday life. Three challenges were accepted from 103 that were submitted
A weekend in mid-November was selected when groups of people were invited to Amsterdam and propose solutions to these MS problems. This was the WorldvsMS challenge and the Amsterdam Hack.
WorldvsMS challenge and The Amsterdam HACK
I had been a part of the WorldvsMS team since it started in March of this year. The big day had finally arrived, I was going to fly out to Amsterdam and be an MS expert. My challenge was to fly out to Amsterdam with mobility scooter and rollator.
Back in the day
When I was working as a computer geek, flying was an everyday event. Packing took me five minutes Roll up at the airport every Monday morning; fly out to somewhere in Europe and then do a full day’s work. Fat chance of me that doing that now.
The packing list has grown. Do I have enough pills and catheters to last? I must not forget the battery charger for the mobility scooter. That is just the start. I really had no idea what was going to happen. I was booked onto the 2.40 flight from Heathrow on the Friday afternoon so this was going to be a big adventure.
I met up with two friends, Barbara Stensland, who writes the blog Stumbling in Flats and Trishna Bharadia who I know through my MS consultant. We went off to meet the WorldvsMS team over supper, highlight of the meal was the Dutch gin. I have added it to my Christmas list.
The challenge was to find a solution and there were three problems. They were walking and balance, suffering from heat or cold, and bladder control. The hackers challenge was to submit a bright idea to solve one of the problems and not to find a medical solution.
I was a tester
A team for temperature sensitivity had an idea to be tested. It involved drinking beetroot juice and using a Tens machine to stimulate the muscles in the arms and legs. I suffer from cold digits but these ideas did not make my fingers or toes feel any warmer.
Everyone was amazingly friendly and there was a fantastic atmosphere. We all wanted to be helpful and make the event a success.
A useful thing I discovered during the weekend. I can ride my Travelscoot using the right hand to steer and control the throttle. My left hand can pull the folded Topro rollator along on its wheels. One problem, I must be careful and that is not something that comes naturally to me.
WorldvsMS, packing list, big adventure, give a voice, everyday life, propose solutions, multiple sclerosis problems
How were the airline about getting the TravelScoot onto the plane and did you take the battery as hand baggage? I’ve seen the videos on the Travelscoot website but would be very nervous that there would be huge stress getting an airline to allow the batteries. M
I have had no problems taking my Travelscoot abroad. You will need to speak to the airline befoe arriving ta the checckin desk. The Travelscoot goes into the hold and it is not always folded up, you take the battery into the cabin as handluggage. The airline will need to know the size and power of the battery. My battery is 11.75Ah and Lithium content is 24 grams and that is OK. Info on battery.
Many thanks for the useful info!
Its very therapeutic.
I think you do really well to travel to these events especially without accompaniment.
I would struggle with the travel but even more with strange beds etc. I find getting into and out of bed a struggle and moving about in the bed, especially so, and sitting up even more so, I have to roll over onto my front and then push myself up with my arms, the softness of the mattress/pillows makes it harder.
How do you cope with beds? same sort of problems or is it less so?
I have always been a very independent minded soul. Sometimes it can be a bit of a struggle. This time the hotel room was not adapted for a dsabled person so showers were out of the question and without my rollator I would have been totally stuffed. Hotel beds are OK, they can be a bit of a struggle especially as I am so stiff when I wake up. I do need to be very disciplined with things like my FES, catheters pills etc.
There is no bed as comfortable as the one at home and the first night away from home is always bad news.
I just get on with things, its my choice so must not complain too loudly