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Trying to get back on my feet!

There has been a interesting post on Fampyra[ the walking drug]. And how unfair it is that if we get a months free trial - and the results are successful - we have to fund it ourselves. l mentioned on this post that l was hoping to get an appointment to see if l could have a WalkAide FES. Been waiting 7months for an appointment - still haven’t heard. So Friday afternoon l ‘googled’ WalkAide Fes - to see who was close to me who provided them. Found someone only 20miles away. Emailed them - and got an appointment the following day 3pm. This business is a husband and wife - with a clinic attached to their home. They specialise in orthotics/prosthetics etc. They watched the way l struggle to walk with my rollator. Then l was assessed to see if a FES would help with my foot-drop. Sadly, even turned onto the highest setting, my foot did not respond. Very disappointing - as l had seen lots of youtube vids where people with ms have had success. The physio did fit me with a hinged knee brace to my wonky non-ms leg. And a AFO - carbon fibre - that slipped under my foot and went up the back of my leg. l had sandals on - with velcro straps - and l walked well with this AFO - foot kept straight and followed through as it should. No swinging out and hitching it to go forward. When l got home - l was thrilled to be walking about [with rollator] feeling safer and more balanced. But when l tried to use the AFO in my normal shoes [Hotter/Clarks] l could not get it in. So l shall have to get back to the clinic and discuss my options. l have a SAFO - which has been excellent in the past - but l think my footdrop has deteriorated and now it does not do quite the same job. l find with these AFO’s - like Toe Off etc - they keep the foot up - but the foot eventually starts spasming and the toes get painful cramp.

At least l know now that l am not suitable for a WalkAide - Big disappointment as one of these aids - can be worn whatever shoes you wear and of course barefooted. And no wires to connect. lt is just a ‘cuff’ that fits under the knee. And is programmed to lift the foot up and down to suit your gait.

Just wondering if anyone who has trialed Fampyra - have found it helps with foot-drop.

So bit of an ‘up and downer’ this weekend. The excitement of actually pushing myself to take things into my own hands and not wait for the nhs snailpace - deciding that if it worked l would fund it myself as it is difficult to put a price on being safer on your feet. Already had one major fall which fractured my ankle - and since my hip-op l have fallen down several times - now sporting a very bruised knee and side of face. l am worried about future falls - and doing irrepairable damage.

So it should be ‘Best Foot Forward’ - but l haven’t got one!!!

Eee Frances, your will and determination are a true inspiration!

So having spent all those months on the waiting list for FES and then trying to go the private route by contacting the providors yourself, has brought you to the conclusion that a FES wouldn`t work for you anyway. The one good thing is that you no need to wait for however much longer, hoping FES would help you…and can forget about how you would fund it too!

Like you, I dont have a right or best foot. But my foot flop is causing a nagging dull ache up my leg, so i am hoping tomorrow`s appt with a new neuro, will bring about something to help me with that.

We constantly have to think about our safety and what might go wrong next and be prepared for it!

luv Pollx

High Poll - Lovely to hear from you. How was the hols - l shall look forward to reading your post about it.

Fx

I have posted about my hol…not so great I`m afraid.

pollx

Have you been assessed for an Odstock Dropped Foot Stimulator? I understand there is a wireless version available and a more flexible electrode placement might suit you better. They are available on the NHS and will cost nothing apart from a little time. My foot drop is pretty bad and it still works well a dozen years on.

Incidentally, I was told a SAFO has a lifespan of about five years, so you may have simply worn the thing out.

Of course, I am just guessing and hope you find a workable solution.

www.odstockmedical.com