Toe curling solutions?: What works for... - Parkinson's Movement

Parkinson's Movement

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Toe curling solutions?

pdkid
pdkid

What works for you? Has anyone done botox to help this? Thanks!

53 Replies
oldestnewest

I think Kia may have figured out something to help at least partially.

Art

There are 3 or 4 people at the gym getting botox shots for their leg pain but they didn't mention their toes curling. They mentioned the shots helped for awhile but I believe after about 3 they didn't help as well as the first. I will ask them tomorrow & let you know.

pdkid
pdkid in reply to laglag

Thanks so much!

laglag
laglag in reply to pdkid

Their pain is not in their toes but the shots seem to work some :

It has calmed down for me with the Botox. She put Botox in my calf.

My Botox shots are given to me at the base of my skull. I have a rather large muscle in my neck caused by PD the hopes were to reduce the size of the muscle. I have stopped with the Botox, I could not see much, if any change.

Hope this helps a little.

pdkid, I have the toe curling before my next Levodopa dose kicks in. It's so uncomfortable and I can't walk ugh. But I wonder if its more drug-related, than a Parkinsons symptom. Maybe your experience is different. I haven't figured it out. It will also start as a dose wears off. I didn't have this at all before I started meds. So I just helped you not at all, so sorry.

honeycombe3
honeycombe3 in reply to Godiv

Hi there, I no Ionger have toe curling after 16 yrs but when I was first diagnosed I had it quite badly. This was before any possible build up of meds. However you might be right as I am experiencing pain in My toes.

Godiv
Godiv in reply to honeycombe3

OK. I’m glad you stopped suffering from the curling toes. I’m sorry about the toe pain. I have that too and to me it seems related to the medication. I just don’t remember this before the medication, however the Parkinson’s could’ve changed of course or progressed. Well, here’s to our toes and feet feeling better!

pdkid
pdkid in reply to Godiv

Its actually my dad experiencing this issue... I will check in with him... better yet, I will get him to go to this page :) Thanks for sharing!

Godiv
Godiv in reply to pdkid

Gotcha. Well I hope something helps and please wish him well.

I have less severe issues with toe-curling now after some months of working with neuroplasticity training within Farias' online dystonia recovery program.

It includes mental exercises to remap the brain connection to affected body parts, together with physical exercises to try to correct muscle imbalances and motion patterns. For toe-curling, you need to work with the whole leg, and I also had to do corrections in the way I walk.

For dystonia in general, it could help to learn different breathing techniques to decrease muscle rigidity. That is an essential part of the program.

I also sometimes used electrical stimulation under my foot using a EMS device some months back. For me, it made my toes totally relaxed for some hours and less issues with toe-curling for at least a day. I have a cheap EMS device I bought for $50 and I use massage mode.

Godiv
Godiv in reply to Mimer

Your program sounds really interesting! I’m gonna look that up. It just sounds very very helpful and progressive too. You mentioned the lake and I do have a lot of issues in my quadriceps and my calves they’re always flicking and cramping so it’s most likely related to the toe curling for sure. I will definitely look into that and in an EMS. Thank you so much. Good info!

pdkid
pdkid in reply to Mimer

wow, thanks! is there a link that you can direct us to? so glad to hear that you found something that helps, and especially that you have exercised neuroplasticity! very hopeful and inspiring! thanks for sharing

Mimer
Mimer in reply to pdkid

I am not sure if I am allowed to link to a commercial site. But I have no connection to it and have just been using it myself for some months. Just search for "Faria dystonia recovery program" and you will get there. They sometimes have offers with the first month for free. A good physiotherapist specialized in dystonia may also be an option.

I saw from another post in this thread that Kia19 has got a very good result from the program. As with all types of exercise training you have to be persistent and give it some time. I believe it is important to combine it with some type of cardio and resistance training for the best result.

Beckey
Beckey in reply to Mimer

What is EMS?

Mimer
Mimer in reply to Beckey

Electrical Muscle Stimulation. The kind of device where you put some pads on the muscle you want to stimulate, and it gets contracted from electrical pulses. They are small and cheap nowadays and often also have TENS (Transcutaneous Electrical Nerve Stimulation) functionality. TENS could help to alleviate chronic pain.

I have the same problem. It occurs in the morning when I awake, because I stay without levodopa from 8 pm to 8 am. When I take my first dose of levodopa the problem disappears.

mjlepore
mjlepore in reply to emmemi

Same after I take first dose in the morning it is goes away

Godiv
Godiv in reply to mjlepore

So maybe I need a little more levodopa. Darn I hate increasing or maybe in the afternoon I need to be way way more careful with protein because when it occurs it’s usually in the afternoon. Thanks!

Godiv
Godiv in reply to emmemi

So I guess for some people it is a drop in levodopa levels or I guess dopamine levels. Interesting thank you.

BlueHawaii
BlueHawaii in reply to Godiv

I have it in my right foot only, so far, knock on wood! Lol. Mine, too, is always when meds are wearing off.

I hate it, because I cannot walk that way.

Godiv
Godiv in reply to BlueHawaii

I know. I look like Frankenstein‘s monster clumping around. It is a very uncomfortable feeling and it’s so hard to distract yourself from it. I hate it too.

I had toe curling issues that significantly affected my walking (my wife used to refer to me as Captain Ahab as I hobbled about). Botox completely fixed the problem. Issues are you have to go back every 13 weeks and you have to make sure it is covered by your insurance (or you will get a toe curling bill from your provider).

pdkid
pdkid in reply to Tfrk

Oh amazing, so glad to hear that this had helped. Do you experience any side effects at all?

Tfrk
Tfrk in reply to Tfrk

No noticeable side effects. The only problem I ran into was trying to get a bit too much out of the Botox. Botox is used fo a number of PD issues including drooling (fortunately I am not at that stage) and the like. I tried to address some dyskinesia in my left arm and ended up injecting near my neck muscles which affected my neck rotation. But I suppose all that is reversible as the Botox has a limited lifetime

BlueHawaii
BlueHawaii in reply to Tfrk

Clever! Toe curling bill! Lol

BlueHawaii
BlueHawaii in reply to Tfrk

Funny-toe curling bill!

Theraworx. About $18 it works great on cramps and helped my feet a lot

BlueHawaii
BlueHawaii in reply to Idofotos

What is theraworx?

Idofotos
Idofotos in reply to BlueHawaii

It’s sold at Walmart or probably any pharmacy comes in a foam or a spray I’ve only use the foam it works for me I believe it’s a magnesium spray

BlueHawaii
BlueHawaii in reply to Idofotos

Thank you very much. I may have to try it. How long does it take till you notice it working?

Idofotos
Idofotos in reply to BlueHawaii

Pretty fast I would say it was just minutes

acupuncture

I have dystopia in both feet. It is worse in my right foot, and the cramping goes up the outside of my right leg. I get Botox every 3 months. It really helps, and my foot no longer turns in. My toes still curl sometimes, but nothing like they did before Botox.

I have ZERO dystonia now. I couldn’t walk fast 9 months ago but now I can run.

Dr Farias technique for dystonia helped me to get to this point where my exertional dystonia is none.

I highly recommend his technique to all PWPD with or without dystonia. Neuroplastisity works . Need to be patient and consistent in practice.

Avoid acidic foods and reduce taking animal protein. No alcohol. No soda.low carb diet with plenty of leafy green vegetables.

Despe
Despe in reply to Kia17

Amazing, just amazing, Kia. I am in awe. The transformation of this young woman is unbelievable!

Did you have physical or virtual sessions with Dr. Farias?

Kia17
Kia17 in reply to Despe

I am following online training by Dr Farias. I would recommend to all PwPD without hesitation.

Young man 😀 by the way.

Despe
Despe in reply to Kia17

Thanks, Kia. What do I need to do to have hubby follow him on line? Is it free, do you have to create an account? Please enlighten me. :)

iqbaliqbal
iqbaliqbal in reply to Despe

i have sent a Privat message related to your question

Despe
Despe in reply to iqbaliqbal

Thank you! Will answer tomorrow, time for bed. :)

GioCas
GioCas in reply to Despe

😊me too!

Kia17
Kia17 in reply to Despe

You’re welcome. It has a subscription fees of 35 USD a month and you can sign up with a Facebook account. Once signed up you will have access to some videos and every week new videos will be added to your account. If you have any questions about the session at the bottom of each video you can add your questions and they will be answered by a moderator or Dr Farias himself.

dystoniarecoveryprogram.com/

Please let me know if you have any questions.

Despe
Despe in reply to Kia17

Kia,

Thank you! We don't have though a FB account.

Kia17
Kia17 in reply to Despe

I didn’t have either and made one for that.

rebtar
rebtar in reply to Kia17

Kia, is there a specific Farias program for foot dystonia? I looked at the link (didn't sign up yet) and just saw a general dystonia program. Do they recommend specific exercises once you sign up? I had toe curling before starting C/L , resolved with the meds, and it's started to come back (two years later), even with an increased dose. So clearly the prudent step is to do this program rather than continuing to increase meds...

Kia17
Kia17 in reply to rebtar

The program is designed for different places of the body. For instance for toe dystonia you should do the leg folder section.

dystoniarecoveryprogram.com...

Plus you need to do Breathing exercises, eye tracking, inter hemispheric synchronisation and ....

I would alternate between different exercises but do some every day.

rebtar
rebtar in reply to Kia17

Thanks! I’m so glad it worked for you and you’re back to running. I’m hoping I don’t have to put the brakes on exercise. Due to the pandemic plus the smoke from wildfires here in CA, my exercise regime took a hit ( although I never stopped) and I’m Just now getting back to where I was before. And with just a few days, I can already see the difference.

Kia17
Kia17 in reply to rebtar

You’re welcome. The interesting thing about Dr Farias exercises is that you can do them at home except fast walk unless you have a treadmill at home but he recommended going out for fast walk.

rebtar
rebtar in reply to Kia17

I'm looking at the program now (signed up). You went through the whole leg dystonia program as organized?

Kia17
Kia17 in reply to rebtar

Yes, plus eye tracking, breathing,synchronisation and many more but focusing on leg practices folder.

Mimi1520
Mimi1520 in reply to Kia17

Good morning. I have had focal dystonia in my right foot for the past 11 years. My knee replacement plus the dystonia worked together to make my foot drop. Luckily my foot has come back, but my doctor does not want to give me Botox injections for my foot curl and toes.

Does this program completely fixed the dystonia after a certain amount of time or do you use it to calm it down?

Kia17
Kia17 in reply to Mimi1520

Hi

In my case it has resolved my exertional dystonia totally but as you know it may work differently for different individuals.

I get the toe curling and swollen foot after I take my carbidopa levidopa 25-100. It occurs within 30 minutes of taking the meds. I then take 1 gram of B1 (Thiamine hcl) and the curling stops and the swelling goes down.

Hi there, I am a marathon runner diagnosed with PD over 7 years ago. I am plagued with the curling toes, twisting ankle ect. That was my beginning symptoms. Could barely walk let alone run. Definitely CD/LD helps but I also receive Botox injections every 3-4 months in my leg , bottom of my foot . It helps me but doesn’t always work for everyone. Make sure your insurance covers it bc it’s pricey if not covered. I hope you find something that gives relief, I know how painful it can be. Take care. Karen

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