Tag Archives: hungary

Isten Hozott Magyarországon

danubeI think the title means, ‘Welcome to Hungary’?

I can’t be sure, as Hungarian is the one language that has completely flummoxed me.

Yet ‘welcome’ is the best word I can use to describe my trip to Hungary over the weekend, to speak at a neurological conference about my MS treatment option.

From the chaos of Budapest airport to the stunning hillside of a remote hotel on the curve of the Danube, I slept well for two nights in a row for the first time in months.

I had my speech ready, I had a nap beforehand, I polished my shoes. I had been told it would be a small conference attendance as I was due to speak at the end of the main day. Excellent. 60-odd people? I could handle that.

I met a translator, who had worked for NATO Generals, no less, so I felt a little feeble, clutching my print-out, scribbled-out speech in my hand. Luckily, he had also translated for my fellow-Glaswegian Alex Ferguson, so I knew I was on solid ground. Apparently, according to Hungarian people, I speak really, really fast.

Sadly for me, and my first attempt at a sole speech, it was a packed house, and we were running late. So I sat through three incredibly interesting presentations in Hungarian. Then it was my turn and nobody left the room. Everyone took up their headphones for an instant translation of my ramblings. Right. Ok. I could do this.

And so I began.

I gave my speech. People nodded and clapped. Then I moved from the lectern to the stage and sat with a fabulous Hungarian neurologist and answered questions. I felt a lot happier on this ground and chatted away, feeling sorry for the translator who had to explain  my ‘uumms’ and ‘ahhs’.

People clapped, and I left, a little shaky, but certain that I had done the best I could have. I was instantly whisked away to speak to a journalist from the only magazine for MS peeps, translator at hand. I had my photo taken and could feel his disappointment as I know I look a lot bigger in white tops.

Anyway. Hungary. What a beautiful country. I lived for a while not so very far from there – in Austria, for almost two years. But that was over 25 years ago.

To be back there was just perfect. The changes have been immense, and it was a joy to see a country I love blossom.

On an MS note, it was fantastic to speak to the movers and shakers in the Hungarian MS community, and hopefully, this will trickle down. And then some …

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Expert By Experience

speechI’m ever so slightly nervous.

I’ve been invited to speak at a neurological conference, about my experience of MS treatment: in my case, Lemtrada.

I’m nervous on two counts:

  • I’m not a hugely experienced public speaker
  • It’s taking place just outside Budapest, Hungary (and I’m going in two days, eeeek).

However, I am going and I will do my absolute best – it’s a topic I’m passionate about and if that means conquering my MS-travel-related-anxieties, then so be it.

I’ve written (and re-drafted) my speech and I think it comes from the heart. In it, I discuss my decision-making process in choosing the treatment I had and the benefits of it. And also the downsides.

It it empowering to have a voice and to discuss in public the importance of choice. Reflecting back over the last couple of decades of my life, my voice was somewhat quashed; whether through experiences or through people I allowed into my life, with all their notions about how I should act, what I couldn’t say. It’s kind of poetic irony that my first relapse affected my speech.

So MS may have taken away my speech with one hand but it gave me back an attitude – a desire to create change – with the other. Blogging has been a huge part of this – from meek beginnings, where I hid my identity for fear of ridicule or prejudicing the legal case against employers who sacked me for having MS, to my more strident posts, yet always trying to demonstrate a balance of how life actually is for a small family coping with MS.

However, finding a voice is also about listening to other voices, and the thousands of comments on my posts I’ve received over the years have proved that, over and over again. You guys have sanded off my sharp edges, picked me up when I’ve been down and virtually held my hand through Teenager crises.

And that’s why a large part of my speech is devoted to you, and the power of support. When I took The Teenager to Uni almost two weeks ago, I didn’t feel alone, even as a single parent. I really felt that you guys were there with me, every step of the way.

And it’s also why we are all ‘experts by experience’ – a phrase mentioned to me by a fellow blogger, Patrick. We both agree that the usual, ‘expert patient’ can still make us appear as passive recipients of care, whereas ‘experts by experience’ emboldens us, allowing us to stand up and say, ‘yes, amongst everyone here, the neurologists, the physiotherapists, the researchers, I’ve had the treatment and I am the expert too.’

So, listen to me?

It’s me who went through the lumbar puncture, the MRI’s, the blood tests, the initial steroids to ward off relapses, the actual treatment, administered in a drip. I’ve been completely floored and got back up again. The different tablets for weeks afterwards to ward off infection. The fatigue, the weakness, the all-too-quick-recovery back into work before time.

We’re symbiotic – the health care professionals and us, the patients.

We work together?

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