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!!!