anybody experience with orthotics?: I am sca... - Ataxia UK

Ataxia UK

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anybody experience with orthotics?

coat2003 profile image
23 Replies

I am sca2 sufferer. I can wear ONLY one pair of shoes, clogs, not wooden, specialized medical shoes for nurses as they spend all day long on their feet in hospital.

Clogs are fine for spring/summer/autumn/British mild soggy winter, fingers xed it stays mild. But what happens when more than 4 consecutive days of what's called a continental winter? I am self-sufficient by now with my walker and the3 clogs...I need shoe insoles, NOT A FULL SHOE SPECIALIZED, OTHERWISE Back to square 1...I'd like the flexibility of wearing different shoes depending on weather.

any comments, suggestions, advice? the shoe imprint helps me to centralise...Never take them off..Cold feet in general...Would use them in slippers. Fully closed.

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coat2003 profile image
coat2003
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23 Replies
MaryRH profile image
MaryRH

I love my crocs too.... Look at Moshulu. They’re quite a localised UK brand but they have a few shops and sell online. I’ve been wearing nothing but their ankle boots since I bought them and plan on wearing them forever :) They’re light, flexible, good quality and can be resoled if you can find a decent cobbler. They’re also really colourful and I like to think quite stylish! I have SCA and the right shoes (or in my case, lace up boots) make such a difference to tripping and falling. All the best!

cocoa profile image
cocoa

If you are in the UK you can see a podiatrist on the NHS.

I have been seeing mine since I was diagnosed and have orthotics made for me.

coat2003 profile image
coat2003 in reply to cocoa

Thanks for your advice.Going to see my neurologist and if till then no luck with the NHS hospital appoint, will go through a podiatrist, but has to be nhs approved.

cocoa profile image
cocoa in reply to coat2003

I think you can do a self referral …. if you have online access to your GP surgery the information should be on there.

coat2003 profile image
coat2003 in reply to cocoa

I'll explore it further, if this referral fails. A bit weird, so many cuts, either they work only a few days a week, rang there, the answerphone on...This time have to wait till 26th November...they might contact me by a letter or phone...if NOT will ring myself. Will contact NHS podiatrist a different one for feet imprints...Only have to go through the NHS, before the private way. Going to see my specialist mid December, wld like to ask him for a blood test re cealiac disease, strong suspicion...I have other food allergies, but wheat so far negative, but bloated after eating bread...as the usual bread manageable to buy, BUT GLUTEN FREE can get costly and pasta, rice...horrendously priced, no whim of mine, need a prescription, serious stuff.Perhaps will do a gp, just need the specialist to instruct him.no idea if fasting or not.If yes, wld ask for a thyroid test as well...as a weightloss (stress of my hubby's passing). and need to sort it once for all.

wobblybee profile image
wobblybee

🙂 I’ve been referred myself for inner soles. And, a friend with ataxia takes a couple of pairs of shoes/boots (yearly) to a Specialist service to have specific inner soles fitted.

Your condition is affecting your health and mobility, so this should be FOC, speak to your GP 🙂

Can I get podiatry on the NHS?

You may be able to.

On April 1 2013, clinical commissioning groups (CCGs) were given the power to decide what footcare services to commission for their local area.

Guidance by the National Institute for Health and Care Excellence (NICE) recommends that footcare services related to long-term conditions such as diabetes, peripheral arterial disease and rheumatoid arthritis should be available on the NHS.

But there's no NICE guidance for foot health provision that isn't associated with a long-term condition.

This means that each individual CCG will decide what to make available on the NHS, depending on local need.

If your condition isn't affecting your health or mobility, such as a verruca that looks ugly but doesn't hurt when you walk, you're unlikely to be eligible for NHS podiatry.

Contact your GP to see if you qualify for NHS podiatry treatment.

coat2003 profile image
coat2003 in reply to wobblybee

Thanks for your comprehensive summary of NICE. Hope I get somewhere. Anyroad, having election soon and cannot wait for BoJo to be kicked out. The Universal Credit needs to be sorted out for once and all and all these damaging cuts....as well. Going for postal vote as it suits me the best, no taxis anytime soon. Fed up keeping them in business. Feel penalized double as my hubby passed on and he was my designated driver and nobody else from the family interested or cannot drive. \just need to suck it up, what else is there to do? NOTHING.

wobblybee profile image
wobblybee in reply to coat2003

🙂I’ll have to do a postal vote for the first time ever..London appointment the very same day 😯

coat2003 profile image
coat2003 in reply to wobblybee

just keep an eye on the deadline 26th November...I am doing the same. Used to go in person, but more difficult now.

wobblybee profile image
wobblybee in reply to coat2003

😬 Thank you for reminding me 👍

Litty profile image
Litty

I go bare foot quite a bit. I get cold feet and have to wear socks. I used Sketcher trainers but had trouble tying them. Then I found elastic, very comfy shoes by Pavers

pavers.co.uk/products/stret...

x

coat2003 profile image
coat2003 in reply to Litty

Litty, I never walk barefoot, I need checking the shoes as tend to walk to a dog muck...My feet always cold, my hands the same...Pavers quite dear.But I use cheaper clogs and they are the nearest...

D1DG3 profile image
D1DG3

Hi,

I have been wearing orthotic ankle boots about 11 yrs now I have very unstable ankles and Pes Cava ( high arches) in both feet. They are through NHS and made by a company called Chanenco are very stylish. My neurologist at the time referred me to a neurophysio she suggested to neurologist I need a boot to help stabilise my ankle. On about my 6 th pair, they are all built up around ankle, with insoles for arches also built in is something to help prevent foot rolling out the way as this can result in a fall or near fall. They look just like an ordinary boot as all adjustments are hidden inside. Hope you get the support I do. I would put a picture on but can’t see how to do it.

coat2003 profile image
coat2003 in reply to D1DG3

thanks for this, I am pleased to hear anything regarding this. I started thinking all sorts, as my bro has sca2 but much milder form and can walk fine...wearing whatever shoes he likes...One has to explore all the avenues.

PatsyIpswich profile image
PatsyIpswich

These are the only shoes that have been great for me. It's easy to get 'wide' footwearbut not the depth needed. I hope this link to Cotton Traders works.

cottontraders.com/footwear/...

I am on my third pair now. My orthotics were made privately by Essex Orthopaedics

I have tried several pairs through NHS over the years but they are always too deep.

facebook.com/Essex-Orthopae...

coat2003 profile image
coat2003 in reply to PatsyIpswich

thanks for your links.My foot is rather slim, no need for extra fit...have to wait till 26th, then ring myself for the appointment, if any probs will refer tour links

D1DG3 profile image
D1DG3

Must say my boots are a god send, without can walk about 2-3 steps then just fall ankles are very unpredictable. I wear them 24/7 cannot wear anything normal. Soon as I’m up boots on till going to bed. After bathing boots on first to help with stability. Like second nature to me now, they help me in keeping my goal of walking as long as I can.

coat2003 profile image
coat2003

I understand what you mean. My glasses on, my clogs on and the light on, otherwise wld be on the floor ALREADY. No chance without any of them, that's how I fell lost the balance. when first noticed something's wrong.

ShoeIdiot profile image
ShoeIdiot

Hey, I've great experience with <a href="shoeidiot.com/protalus-inso... insoles. You can try as well.

HarryB profile image
HarryBAdministrator in reply to ShoeIdiot

Hi

Do you have any experience of the insoles you have reviewed in relation to people with ataxia? Perhaps you have ataxia yourself?

Harriet

coat2003 profile image
coat2003 in reply to HarryB

no experience to share, I have sca 2.usr medical shoes/clogs for nurses as they centr me the best, but they tend to last 6months and cannot wear any other shoes...unsafe.no heels, no flats, nothing need the support, will try these insoles you suggested mx

coat2003 profile image
coat2003 in reply to HarryB

got a bit muddled Harriet, with another post, will look into it and choose and try it all. I suspect troubles with NHS, as cuts everywhere...they seem to work in Orthotics dpt, just half a week, so oe can imagine how bad...But persevere with it, and explore more paid by me...this is quite important for me.either, or will get there.there are some more suggestions.what happened with this ataxia my centre of gravity moved, as the condition progressed and lost balance...I'd never had dreamed about it, many people don't realise implication on life...certainly NOT healthy.It is all a whole package.Not just one inconvenience, more...One has to keep wits about, all new for me...had it diagnosed in November 2017. early days, relatively speaking...

coat2003 profile image
coat2003

the way this neuro referral via my gp is going 2x digital request, still waiting....something doesn't work.Will try anything.Than you.

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