Forum

Mobility issues - HELP!

Hi,

So it’s not been such a good day. As well as MS I have epilepsy. My epilepsy isn’t fully controlled but I only have really tiny fits called absence seizures (never tonic clonic). I can continue talking, typing, and basically doing things as normal whilst having them. With my MS, I have significantly weaker arms and legs than I used to, I get fatigued very easily (severely recently), have a constant soar (usually mild, but more intense at the moment) left foot, and currently have vertigo and double vision. Due to a combination of the current additional issues, but also uni and uni work to conserve energy, I have had a wheelchair assessment. Due to my fatigue and arm weakness, I require an electric one (I think I’d be worse off in a manual one than actually walking). So when I was rung today by wheelchair services to say their policy (note policy, not the law) was that they don’t give electric wheelchairs to people who aren’t seizure free - well f*ck them!!! (pardon my french, I’m a little angry at how idiotic they people can be).

What exactly do they want me to do? I cannot use a manual (and I’d think this would be more dangerous anyhow if I suddenly lost the ability to stop it. But in a year of wheelchair basketball, no stopped due to arm weakness, fatigue, and lack of mobility to get there, this hasn’t ever happened. An electric one would surely cut out the moment your hand comes away) because of my strength. I cannot walk everywhere. I cannot drive due to the epilepsy. And my seizures are negligible anyhow.

I asked what their solution was to this and they didn’t have one. They said go to a charity - oh but the charities have the same policies. Eh? Aaaaarrrrrrrgghhhhh!!!

Does anybody have experience of this, and if so, how did you resolve it? Or just any advice anybody can give. Thanks

Comet

My daughter suffered Petite Mal and thankfully out grew it at adolescence. How about talking to your GP, ms nurse, OT? Perhaps a well written letter from them assuring them of your capability during an episode and insistence of your need for one might help?

Thanks Poppy. I’ll certainly give it a go. But they got back to me after their MDT meeting today and said it’s a no as they may be mild but it’s still epilepsy. It’s a Scotland NHS wide policy. It’s not law, just their policy. They said my GP should have know about it, and in truth she didn’t have a clue what she was doing so probably not the best person to speak to. I was in for my MS infusion today and mentioned it along with some other things, but they (the MS nurses) certainly didn’t offer any help and they are a little slow at doing things / wet behind the ears up here. But I can always phone to press the point. Fortunately, at least for the moment, my MS seems to have calmed again so I’m okay for getting around. I have actually made an enquire with a legal firm who if it hadn’t been for the fact that I’m in Scotland (they don’t cover it and they hadn’t realised) they’d have happily taken them on, and I’d have got legal aid so nothing to pay. Will look for one in Scotland soon, and just hope my health stays good until then. Thanks again for your reply, and hope you’re well.

Comet