Floppy feet and fluctuating muscle tone

Over the last few years I have noticed that I seemed to have more difficulty picking up my feet.  I read about someone who swore by their Piedro (orthopedic) boots and was able to walk much better in them than they could regular shoes.

So I got a pair of patent leather ones and these supported my feet but I felt the support needed to go a little higher up to support my lower leg also as I have to try and walk into local co-op using their mini trolley as a walker as the store is too small for electric wheelchair or scooter to get around.

I got appointment with physio who didn’t think the NHS would pay for them as she claimed they would be over a £100 for me to walk a few steps between transfers and they wouldn’t allow me to walk everywhere with a stick as before I would still need wheelchair which NHS had already issued me with vouchers.

As you can’t get splints or AFO’s (ankle-foot Orthosis)  to give them their proper name, in UK without prescription, I had mine imported from the US.  As I had already got my piedro boots in a size 6 my regular size I had to look into the open splint designs that would allow me to fit in the same size shoe.

dynamic AFO's.. the more open design means the shoe/boot also needs to offer good support to keep the in place

AFO's in first pair of Piedro Rehabilitation Boots

I think they have been worth the money,  as when my feet have been very floppy I have still been able to walk enough to get from car into family members houses which aren’t wheelchair accessible and into my local co-op for a few groceries which would have otherwise meant going all the way down the Asda.  As I can’t take Inca and already have to walk her twice a day,  thats three trips out which I find exhausting on a regular basis and when you only want a few pints of milk its a pain as then don’t have time to do anything else that day.

As my muscle tone seems to change throughout the day I am sometimes able to manage in regular trainers although I do find I trip more,  drag toes on floor and my lower legs don’t seem as stable,  I have to lean on the rollator or crutches alot more so end up with shoulder/neck pain.

When I have the Piedro boots/splints on I seem to stand more upright,  I don’t lean as heavily forward onto rollator/crutches.  I’ve even managed with one stick if theres a wall or another person to help steady me.

Next issue:  The laces are fiddly when you also get jerky movements of arms from the ataxia too and when its taking a good 10 mins a day to just lace them up everytime you want to wear them I get frustrated as I’m not the most patient person with myself,  I still want to be able to do things as fast as I used to be able to.

After two years using the boots I got another pair with velcro fastenings just to use daily so they are quicker to get on and off,  and now saving the patent leather ones to go with ‘going out clothes’, where I need to be able to do some walking. (ie to get into local pubs.. they go nice with jeans/smart black trousers)

black leather with patent 'crocodile' trim and velcro fastenings

I do still slip regular trainer or ugg boots on if I’m going somewhere and going to be in chair all the time until I get back home, but I have found these boots/splints have helped me personally as living in village in yorkshire,  the nearest shops/hairdressers/vets etc aren’t wheelchair accessible.  As long as the ground is flat and level I can manage enough to get around my bungalow for a while with rollator,  get in and out of shop, or into families house.

I also find they help with getting back up off regular sofa’s etc as I can lock legs out and push legs against the splints and front of sofa it helps with standing up and not putting all pressure on my arms to haul myself up.  My shoulder/neck pain has reduced since using the boots/splints reguarly.

I also do daily exercises for core muscle and leg strength. There were some concerns that splints would weaken legs however my legs are quite strong my issues were feet/ankles been too floppy and keeping my balance and co-ordinating my legs when walking. Weight-bearing exercises are important and the wii fit/balance board is great for that.

Been able to stand to help others transfer you or help with dressing makes the whole process alot easier,  although I dress myself on my bed,  I can stand in changing room long enough for friends/family to help me with trying on outfits when I go on the occasional shopping trip.

been able to stand a short while and manage a few steps can make big difference to staying independent

The muscle tone fluctuations are more noticeable in my arms as they constantly twitch as muscles switch from tense to relaxed, unless I’m having a day and they are feeling really floppy and heavy when I need to use arm splints to be able to do things. Trying to hold onto a rollator/crutches while arms are twitching is a risky business so sometimes leaning more weight onto them helps as you walk,  this is ok with rollator when arms dont have to move but when co-ordinating crutches so weight shifts on and off them it can make it very difficult as if arm twitches just as you about to put it down on floor and lean weight on it it can slide from under you.

I was considering whether to switch to a stick that has a wide base like tripod or quad stick so it will stand upright on its own if I need to let go, but I don’t know if I would be able to manage just one and they don’t fold as easily as folding crutches,  you also can’t swing on them when your struggling to get your leg to take the next step to get over a low threshold, you also dont get the support up to elbow.  I have also considered a forearm walker wondering if I would walk better with that

troja forearm walker.. with forearms more supported they maybe less shaky in people with ataxia

I’ve no idea who the woman is! Just thought it better illustrated how it would support you whilst walking with it, than just showing pic of walker on its own.  I’m not sure if the tray is on a seat to sit on or its just a tray.  I’m considering it as my next walker for around the house.  my usual idea if something is expensive is to get a free home demo,  tell them I’m not sure or got others stuff to try then save it as a search on ebay once I know something would definitely work for me… bit cheeky, I know.. but we do what we got to do to survive and get we need!

15 thoughts on “Floppy feet and fluctuating muscle tone

  1. Kati those boots are fab!
    Being both fashinable and give vital support as well.
    The walker does look bettrer than others Ive seen

  2. All brilliant as usual.

    Do do know if you can get something similar to the AFOs with velcro on the foot? I get bad crap at night and have discovered that sleeping on the sofa and pushing my feet against the arm (keeping them at right angles to my leg) helps. This is fine at home but in a few months time I am staying in a hotel for a night and have been thinking it might help if I can fix my foot at that angle.

    Also very impressed with the forearm walker. I think it helps to keep you more upright and reduces the old stoop. A seat would be good but I think it is a shopping bag/tray thing. Go for it with the old road test thing … you are our mobility queen after all!

    Well done! x

  3. i love the boots ,i knowwhat you mean things take us longer cos everything is so fiddly took me 15 mins the other day to thread a needle getting well miffed by the end .you really are an inspiration to everyone as you always try and find a solution to things and let everyone else know well done !!!!!!!!!1

    • Message for Cathy.

      A friend gave me a pack of ‘easy-thread’ needles. They are brilliant! You just push the cotton in the top. I think you can get ones from the side too.

      Not sure of name … sorry … but saves so much frustration x

  4. Cerebral Palsy is the most ANNOYING disability! I have Atheoid, and most of the time I feel like my body is a metaphor for Dante’s Inferno!

    • Hi Lisa
      I wasn’t born with mine so it does feel like someone else is controlling me sometimes. I have got alot of useful tips from friends and penfriends online who have CP and have had to deal with the involuntary movements all their life. KT

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  9. Would you be happy for the image ‘AFO’s in first pair of Piedro Rehabilitation Boots’ to be used in a teaching resource for nursing students??
    Many thanks,
    P Dawson

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