Dystonia in the foot and ankle.

[Richard33]

Hi,

My wife (58 years old with CBD or possibly PSP - they are not sure) has dystonia in the foot and ankle - painful when she walks. It is helped if she wears lace-up boots that support her ankle, but has anyone else any other ideas? She loves to walk out in the country and now can only use a rollator for a short distance.

(This is a great forum - I look at it most days. Thanks to you all).

Richard

[honjen43]

Hi Richard33. Welcome to this site. You will find help and support here from carers and victims alike. We all learn new things each day!

Check out the recent post from Bargiepat's Cornish holiday. He has a really neat way of getting out into the country! Think it may help you and J if you can find another outdoors person. Just needs 2 poles and 2 helpers!

Keep up the research! Walking boots certainly seem a good idea as long as the ankle is not prone to swelling.

Hugs

Jen xxx

[Yvonneandgeorge in reply to honjen43]

Hi welcome, my husband suffered with pains in his ankle before being diagnosed with PSP, xxxx

[eppendorf]

So sorry Richard to hear of your wife's discomfort with Dystonia. My husband has it bad in one foot where his toes are completely curled up and very painful. Unfortunately, he is now bedbound and is not able to walk around, but the pain is still very strong. I have a very good arthritis cream, which unfortunately, you can only get on line and he finds it helps when massaged well in - it certainly helps my knees etc.

I don't think I am able to name it as it would be advertising. But it contains the wonder cream CELADRIN - comes in a large white tub with a blue and yellow label on it, and begins with the letter S.... costs around £14 and I get it through Amazon. I hope it may work for your wife, but it certainly helps with arthritis - must be well rubbed in to get through to the bone. Good luck!

[Richard33 in reply to eppendorf]

Hi, Thanks for that. I think I found it ok and have ordered it. Will give it a go and report back!

Richard

[daddyt]

Hi Richard,

You may want to consider Botox injections. I have dystonia in my right foot/ankle and my left foot and receive Botox for both as well as my eyelids. I've been very happy with the results to date.

[Richard33 in reply to daddyt]

Hi, Sorry - should have said. Ruth has had Botox in her foot and is due another go shortly. Helped a bit, but the pain seems to move around her foot and ankle. So sadly was not the help I hoped it would be. Thanks. Richard.

[enzo501]

Richard,

My wife has suffered with a progressive dystonia in her right foot for at least 3 yrs. We live in the denver,co burbs and have Kaiser as a provider and a medicare supplement . They made a brace for her which turns the foot to a (semi-normal) flat position and allows her to walk for a brief period daily . I need tosupport her for balancing reasons but we are not yet bound to a walker or chair . I will describe the brace as a thick plastic form that is calf high ,has 1 velcro belt and goes into her sneaker ..1/2 size bigger than she use to wear. she has worn it as long as 6 hrs .It encompasses most of her foot ...toes are the exception ..and is fairly comfortable ,leaves no marks or blisters . I 'm sure I could find the dr's card that made it if you want .... My wife has PSP and has been diagnosed for 3 yrs and had it at least 2-3 yrs prior to that ...swallowing is her weak point and she doesn't want a peg and I cant blame her ...she is almost 66...good luck ...jeff

[Richard33 in reply to enzo501]

Jeff, Ruth has been provided with one by the NHS in the UK here. It did not really help any more than the lace up boots (big Doc Martens with a zip down the side thankfully). But many thanks for the suggestion. Richard