Wednesday, 5 October 2011

Walking back to happiness?

Walking. It's such a significant ability, isn't it? Being able to walk is one of the markers of development from babyhood to childhood.

And to many of the general population in our culture, it's whether someone can walk or not that determines whether or not they're disabled. Many of us with MS quite rightly complain that our invisible symptoms disable us just as much, if not more, than mobility problems. Even so, we often resist using mobility aids such as sticks, crutches or wheelchairs for as long as possible: visible symbols of our disabilities.


The worst symptoms of my MS are fatigue and pain. Even so, any improvement in my mobility would make my life far easier! I'm currently able to walk very short distances, and use a power wheelchair outside the house.

That's why I've been so excited watching the trials of the new drug Fampridine (Fampyra), which was finally released in the UK this week.

Fampridine is a tablet taken twice daily. It's not like Beta Interferon, Copaxone or Tysabri - it has no effect on disease progression. It's effective for roughly 33-40% of people with MS with walking problems: when it does work, it gives an average 25% improvement in walking speed.

Back when it was in trials, I discussed Fampridine with my neurologist. She said that she would want to put me on it as soon as it was approved.

So far, so excellent. But like every medication, Fampridine has potential side effects. Some of these are relatively minor, and pass as you get accustomed to the drug. But some are potentially very dangerous.

Among these is a slight risk of seizures (fits). Now in general, for most people, that very small chance would be a risk worth taking. But I already have epilepsy. So although it's well controlled, anything that increases my seizure risk is not really very good news.



It's all about swings and roundabouts: balancing risks and benefits. At the moment I don't know if my neurologist will consider me suitable for Fampridine, given the seizure risk. I'm seeing her in 6 weeks, and will be asking about it.

But if she leaves the decision up to me, will a possible improvement in my walking be worth risking losing control of my epilepsy? If I have a seizure, I'll lose my driving licence for a year, and I really don't want that to happen. But easier walking would make my life so much simpler.

At the moment, I really don't know what my decision would/will be. I suppose I'm going to have to do some hard thinking over the next few weeks. And who knows? Pretty soon, like Helen Shapiro, I might be Walking Back to Happiness!

2 comments:

  1. I've been told by my neuroligist that I will be considered for the pill. I'm happy on Tysabri not having any relapses. I am used to walking only short distances and with a stick. I'm not ready to take a change on a new drug but so happy it's out there Hope other people get good use out of it:)

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  2. Difficult one, getting around house more easily 99% of time or the ability to leave the house 1% of time but ability to improve quality of life and get things done when need not rely on taxis etc.

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