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EDSS - how far can I walk?

You know how the EDSS scale (the standard scale that measures how knackered we are) relies to a great degree on walking distances? If you can walk 500m without falling in a heap, you’re this score, or 300m you’re that one, or 100m you’re another, etc.

My trouble is that I haven’t the faintest idea what any of those distances looks like. Please, does anyone have any distance ready-reckoners that could help me to visualise how far the distance that I can walk actually is?

It goes without saying that EDSS has every sort of weakness as a measure. I’m just mildly curious as to where I might be on the scale, and I really haven’t the foggiest (except, alas, knowing that the news isn’t good!)

Thanks for any advice.

Alison

OOPS.
Alison, the EDSS is not concerned with how far you can walk, only what aids you use.

One stick (or walking pole, or crutch) equals EDSS of 1.5
Two sticks, etc, equals EDSS of 6.5.

So you could also say that the EDSS depends on how many hands you use to walk.
Distance does not come into it.

Geoff

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Did you read this today by any chance?

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Yep, that’s exactly what prompted the question!

ARGHH! I’m really confused now, Geoff. That doesn’t seem to be what it says in here… http://www.mstrust.org.uk/atoz/edss.jsp

In that case this site might help. Pop your postcode in and use the measure and drawing tool over a route you know.

http://gridreferencefinder.com/#

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Yikes! Confused me too.

Unless memory’s failing me (not for the first time), I was ranked1.5 at diagnosis. Considering I can still walk 3.5 miles unaided, it can’t possibly mean you need a stick or crutch to walk!

Although it does focus disproportionately on walking, I think my deficits were other things - albeit related to walking. I’m sure I failed the bit where they ask you stand on one leg, and then to try again with eyes closed, for example.

I wasn’t very good with eyes open. Asked to try with eyes closed, I don’t think my reply quite ended in: “off!”, but it was something along the lines of: “I don’t think that’s a very good idea; I know I can’t do it!”

Based on performance with eyes closed, then yes, I’d certainly need a stick or crutch, but as everyday life usually permits use of my eyes, I haven’t needed anything yet.

Where’s a fingers-crossed icon when you need one?

Tina

x

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Indeed. My EDSS has never been assessed, so I don’t really know. Thinking about it, this might be a good policy and maybe I should stick with it.

Thank you. I’ll have a play with this. I will have to experiment away from home. though - our post code would exceed my range comfortably even if our busy road was safe enough to walk along, which it isn’t (no footpath). :frowning:

Hi Alison,

I use the Nike app on my phone (think it’s designed for running) I have always used it to measure my walks with the dog so I could work out my weight watchers points. When my mobility issues began I then used it to keep track of how far I can walk, how long it takes me and I then check when my fatiguable symptoms start. It does measure in miles but I used an online calculator to convert to metres.

SNOWQUEEN

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Thank you, Snowqueen! Why hadn’t I thought of that? Free app now loaded, so we’ll see how that goes. Thank you for the suggestion.

I am certainly not keen to be assessed again, as I found the assessment itself quite stressful. I know that’s partly just my temperament, but any situation where you’re being asked to perform things you know you have trouble with is bound to be a bit stress inducing. I think he actually found a few things I don’t have - such as tremor. He didn’t realise I was shaking from nerves, and not the MS, and have never had this at home!

So I’ll be very happy if I don’t have another one for ages, if at all. And yes, it could be a bit like counting lesions - i.e. do you really want to know?

T.

Yes: I need to remember that curiosity killed the cat.

Re assessment, if you follow whammel’s link to the Barts blog, you will see that it says that assessment actually takes longer and has to be more searching when someone is at the lower end of the EDSS scale, because the kind of deficits that will make a difference between one score and another are harder to spot and measure. If there’s frank lower limb trouble, it’s easier for the neurologist (although not for the person with the MS!)

OK, well maybe that wasn’t the app for me. It says I have done 2.4km today, and all I’ve done is potter about the house and make an apple crumble. I wish that 2.4km were true, but it is certainly gratifying!

Now I can only remember one instance of being asked how far I could walk:
Years (say 3ish) back, an MS Nurse queried if I could walk over 100 metres. I used one stick at the time.
From the car-park into the hospital building was more than that, let alone how far it was to get to the clinic - and I said so.

The last neurologist appointment, he watched me go more than the 20 metres with the tri-walker, so maybe I should be EDSS ^ not 6.5. Sort of points up the Barts blog that whammel highlighted as being near the truth.

Geoff

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OOPS

Should have read EDSS 6, not 6.5

Geoff

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OK, so I’ve found the free app for me (thanks, Snowqueen). It is called ‘Footsteps’ and works well for a person whose range is modest and whose pace sedate. Some of the other similar apps are really for people who move further and faster than I can.

Thank you to all who helped me with this one - much appreciated.

Alison