Trying SDO's any tips ?: I just... - Charcot-Marie-Too...

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Trying SDO's any tips ?

11 Replies

I just collected my SDO's (sensory dynamic orthosis) Has anyone else tried these and any tips you could give ? I have CMT type 1A.

11 Replies
Amanita profile image
Amanita

Hi, Ulrich, I have never heard of these. Can you describe them? Did you get them from the NHS? The NHS here in Scotland seems to have a very limited range of ankle supports and AFOs. I hope your new orthoses will help you.

Hello Armanita, I did get them on the NHS (Essex) the reason I have them is because they would not pay for SAFO's

They look like a knee length sock, made with Polycotton/Lycra with a long zip on one side and are made to measure. They look a little like Nora Batty's stockings after you've had them on a while.

goldenmist profile image
goldenmist

I have CMT type 1A, I've never heard of SDO's, what do they do for you and what are they, if you don't mind me asking?...James

in reply to goldenmist

They are supposed to support my ankles, its too soon to tell, its only day two.

goldenmist profile image
goldenmist in reply to

Did you have a cast made of your foot area and these made of silicon rubber?

in reply to goldenmist

No, as I said, they are made of polycotton, taken from measurements.

goldenmist profile image
goldenmist in reply to

OK

Amanita profile image
Amanita

Sensory Dynamic Orthoses sounds a very grand name for something rather equivalent to what I have been wearing for 2 years ! My L. orthosis is made from some elasticated substance and does up with 3 Velcro tabs at the front. My R one is semi rigid, and laces up at the front. Both have long straps which cross over at the instep in a sort of figure of eight.

They both have to be done up tightly in order to provide the necessary support, and I have alarming looking big permanent purply-red areas on my legs starting just above the tops of the orthoses - which nobody in the NHS seems at all bothered about.

However your supports are made to measure, and mine are off the shelf, so perhaps that accounts for the name.

Do you find it hard to fasten the zips ? I am finding my supports increasingly challenging to do up, and the Velcro tabs are really hard to grip when I'm trying to undo them.

in reply to Amanita

The zips do bother me, my wife helps, I may modify them by tying a loop of string or nylon through the zipper eye.

i wear something called dynamic AFO'S , made of plastic with velcro straps round my calf, they tend to last about 3 yrs then a split appears in one of them, i think it may be the clutch pedal when i change gear and it flexes. still having said that they changed my life for quite a while then my legs got worse and need a wheelchair now if i have to travel far. best of luck with them and hope they help you as much as mine helped me.....

Amanita profile image
Amanita

When I asked my orthotist what "dynamic" means when describing AFOs, he said it is "just a buzzword". I had hoped it meant something hi-tech which uses your energy to help to propel you forward, instead of the normal biomechanics of CMT where nearly all of your energy just gets absorbed into the ground - but no such luck.

Ulrich, I'm glad you have help in fastening your orthoses. It takes me a good 10 minutes to wrestle my feet into socks, orthoses and boots, and sometimes almost as long to fight my way out of them !

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