Toe dystonia impairs my walking, any tips... - Cure Parkinson's

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Toe dystonia impairs my walking, any tips to over come this?

Malcomx profile image
17 Replies

Hi toe dystonia was my initial PD symptom. I don't really have any other problems at present. I would like to try fast walking as outlined by John Pepper but fear tge cramping will get in th way. Thanks

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Malcomx profile image
Malcomx
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17 Replies
M_rosew profile image
M_rosew

I've found it helpful to go barefoot whenever I'm indoors, and to practise toe-spreading.

Malcomx profile image
Malcomx in reply to M_rosew

Thanks for your response. Do you use a toe spreader or just spread your toes repeatedly?

M_rosew profile image
M_rosew in reply to Malcomx

Just try (and remember) to spread my toes as I step down onto the foot. I also put a cotton-wool pad between two toes that are particularly stubborn.

Malcomx profile image
Malcomx

I shall practise and thank you

park_bear profile image
park_bear

This was also my first symptom. I go out hiking daily. When it starts to bother me I stop, crouch and extended the affected leg back, then forcibly extend the cramping toes. Helps a bit at any rate.

Malcomx profile image
Malcomx

Park-bear thank you. I shall give that a go. I hope you are doing well.

rebtar profile image
rebtar

I find that walking in rhythm to music with a strong 110-120 beats per minute (disco-like) helps reduce the toe curling. It's come on gradually for me over time, the tremor started first. I also do high RPM cycling at the gym and mostly just cycle through it. I've found that sometimes although not always, if I cycle one day then I can walk with less cramping the next. I also hike and find that I don't get cramping while going up or down hill, just on the flats. Instead of fast walking, I try to go as fast as I can when hiking. I take my ipod with me and put the music on for the flats. If it bothers during a hike, and also if it's too much when cycling, I also stop and stretch my foot until it relaxes. You can use this website to put together a playlist by BPM:

walk.jog.fm/workout-songs/a...

Malcomx profile image
Malcomx in reply to rebtar

Mamy thanks... keep hiking!

jujulini profile image
jujulini

i only get dystonia of toes first thing in the morning, due to low dopamine levels and inactivity. it goes away as soon as the sinemet kicks in. until it does, i find that walking up and down stairs helps.

Lionore profile image
Lionore

I use Yoga Toes on the affected foot while I am relaxing. I also find that walking helps even though it's initially difficult. Also try pushing your toes away from your foot and and standing on tiptoe.

Smokeypurple profile image
Smokeypurple

I seem to remember this blogger talking about this issue - she's a keen walker. From memory Birkenstocks really helped due to the molded footbed:

bloggingwithparkinsons.word...

I find Fitflops (boots/shoes/sneakers) help me walk properly as the rolling motion encourages my toes to spread out.

Cbgs profile image
Cbgs

I added Amantadine to help lessen dystonia

jujulini profile image
jujulini in reply to Cbgs

does amantadine help with dystonia? and does it help dyskinesias?

Cbgs profile image
Cbgs in reply to jujulini

Yesssss!

etterus profile image
etterus

My foot dystonia has been improve the most through DBS. However over time it is starting to return. I find that kneeling with my toes pushed into the carpet fully extended for 5-10 minutes is helpful . I also find a magnesium supplement called Calm has helped. This is also used to control anxiety , a co-manifestation of the dystonia.

Leonore1 profile image
Leonore1

In 2014, After 14 yrs of PD, I needed to begin Botox every three months after the toe curling caused me to tear and sprain ligaments in all of my toes. I'd spent six days walking in sand on my honeymoon and didn't notice pain until walking in sandals at the airport v This is not unusual as a PD toe-curling solution and was the only one. I tried all of the toe spreading tools and nothing worked. You have to really shop for a doctor with a special machine which allows precision and who's experienced at doing toes. It hurts like hell for about five minutes but is worth it. Singing loud while someone who loves you holds your hand halves the pain.

rhenry45 profile image
rhenry45

It is easy to fix. You have a neuroma which is causing the toe dystonia. Just go to a podiatrist and he can fix it by killing the nerve with an alcohol injection. Once you do a few treatments the dystonia will go way permanently.

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