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Butlins for people with MS?

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Being diagnosed with MS is the beginning of a long, unpredicatable journey. In Denmark, people are offered a two-week residential course on adjusting to their new life with MS. Tim Wardman went on one and reports back on what he learned.

Tim WardmanHi, I’m Tim. I’m 44 and was diagnosed with MS in 2002. I live in Copenhagen with my wife Iben and our son Sixten. Denmark has an MS Society which runs residential courses for people with MS so they can learn about the symptoms they experience and learn from well trained health professionals. They look at everything from physical wellbeing, fitness, psychological issues, cognition training and diet. It’s a wonderful idea: Butlin’s for people with MS!

I was lucky enough to be invited to a two-week residential course at the centre. This meant leaving my wife and son, which was hard, and asking for two weeks off from work and that I do not like doing. But it was for a good cause (us three) and so off I went.

Day 1

I arrived early with my wife. Who was I going to meet? Will it be two weeks of people moaning? Are they weird? Joining a new social group can be stressful. Not everybody gets along with everybody. But this seems different somehow. We all want to be here and it is our choice.

I soon find that the people who work here are all truly great. Everyone said hello as we passed. The office workers, the therapists, the nurses. I got the feeling that they truly wanted us to enjoy ourselves and have a pleasant, instructive and improving stay. My fellow guests (are we patients? It certainly doesn't feel like it) are also very pleasant.

Day 2

Two afternoon lectures about sleeping and resting. Sounds dull but was actually great. Helped me a lot. MS makes you tired, and I don't mean a bit tired, I mean mind numbingly, let me fall over on a bench and sleep tired. I was tired but felt enlightened. A nice feeling to have.

We met at the dinner table a little later. The women in the kitchen had prepared wonderful food. Lots of veggies and fish. You are never left hungry here. Lots and lots of different topics discussed over dinner. It’s only Tuesday and I feel like there are some of my fellow attendees could be friends.

Day 3

Just before lunch we had a gym session. These physio girls may not appear very big or intimidating, but what they can do with the human body is scary. I have been pulled and pushed, kneaded and prodded, encouraged and scolded, all with the very best intentions at heart and for that I am grateful.

After a much needed nap I had two more sessions – the first was how to use different hand instruments to help with dexterity. After that was a lecture on cognitive strategies.

Day 4

A talk on MS management strategy – how to cope, how to move forward. It all sounds a little self-involved, Dr Phil, pseudo stuff. It was definitely not. It was well presented and well thought through and excellently executed. It contained things which may seem like common sense, but which gave rise to thoughts I may not have considered before – lovely.

This afternoon we start getting to grips with the big boys – peeing and digestion. Two subjects close to the heart of anyone with MS. These are definitely two areas that are so important, but people often feel it too sensitive to talk about

Day 5

An appointment with the physio. A small very pleasant lady who appeared so unassuming and kind. She got a hold of my legs and started tugging. I reacted in my own special way, by screaming like a ten-year-old girl. She pulled and pushed and grunted. I complained (silently) and was stretched and then had to learn how to stretch myself. It was wondrous afterwards. All the tension in my calf muscles seemed to vanish. Now I have a technique where I can relax those muscles I didn’t know remained in this body of mine.

Then a lecture on cognitive skills, followed by a group reflection.

Day 6

The day of rest. But not for me. I will be in the gym exercising my calf muscles.

First I went on a glorious trip. I borrowed one of the disability scooters and went for a trundle. On the journey I saw several other guests on scooters. As we passed, turned or just drove, each driver inquisitively eyed the others’ machines. Sometimes with envious glares. Which was coolest or fastest? Who had the best paintjob? It was bloody smashing.

Then physiotherapy with the strongest small girl you have ever met and had a really good calf muscle stretch. We had a great natter about me joining a gym (just once a week to start) when I get back, which I am seriously considering it. Afterwards felt lovely and, yes, almost supple.

Then a talk on cognitive skills in relation to communication – once again I know more now than when I woke up.

In the evening a group of us went for a meal in town. So two cars full of fellow patients took off and we were three with motor scooters so we got there under their own steam. What a majestic sight we made! Rolling in convoy, sometimes a triangle and sometimes three across the whole carriageway we three drove, not exactly breakneck speed, but at a leisurely stroll. As we were driving, we passed a pub. It was a glorious evening and there we saw another of our merry band. He sat in the evening sunshine, with a glass of white wine beside him and a newspaper in hand. We all politely said good evening as we trundled past and he lifted his glass in tribute and smiled at us all. This guy had very advanced MS. He used a wheelchair, needs help getting up, getting showered and dressing. But right now he was having a perfectly lovely evening. The human spirit is truly a wonder to behold.

Before the end of the week we had sessions on many different things. Trying to plan for our futures: what we want and how best to get it. Seems mundane but really wasn’t. A final trip down the road leading to cognition purity (that sounds rather religious but it wasn’t). Finally, a lecture by a renowned Danish MS expert. He was just great and gave an informative, compassionate and amusing lecture on MS stuff. That was very cool.

As I’m about to leave Haslev, I wonder what will happen with me and this strange journey I am on? Will MS get the best of me or will I conquer it? The last 12 days have definitely given me various tools that I can use to deal its presence. The real answer is – I truly don’t know, nobody does. There you go, you play the hand you were dealt. I hope I play mine with dignity and honour. What I do have is very fond memories of great people, great experiences and I have learned ways in which I can live together with Mike and Stacy (MS).

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