Toe curling solutions?

[pdkid]

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

[chartist]

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

Art

[laglag]

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 in reply to laglag]

Thanks so much!

[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.

[Godiv]

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 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 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 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 in reply to pdkid]

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

[Manypony in reply to Godiv]

I have toe curling without meds

[Godiv in reply to Manypony]

OK, thank you so much. Mine still seem to be medication related.

[Mimer]

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 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 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 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.

[pdkid in reply to Mimer]

Sounds great, thanks! I found the link. How intensive was the program? How long did it take for you to start seeing results?

[Mimer in reply to pdkid]

The program includes so many different things, like meditation, breathing exercises, yoga, tai chi, dancing, music therapy, Kung fu, etc, in addition to the specific dystonia exercises for all different kinds of dystonia. They recommend everybody to do daily breathing exercises together with exercises for the neck for half an hour per day. I don't spend more than five minutes per day on the specific training for leg and feet. I would say that I started to notice some enhancements after 3-4 weeks.

[pdkid in reply to Mimer]

We actually just watched the intro video... Looks like an incredible program and I love that they include all the exercises you just mentioned. Thank you so much for sharing all you experience, it's really helpful!

[Beckey in reply to Mimer]

What is EMS?

[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.

[emmemi]

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 in reply to emmemi]

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

[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 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 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 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.

[Tfrk]

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 in reply to Tfrk]

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

[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 in reply to Tfrk]

Clever! Toe curling bill! Lol

[BlueHawaii in reply to Tfrk]

Funny-toe curling bill!

[Idofotos]

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

[BlueHawaii in reply to Idofotos]

What is theraworx?

[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 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 in reply to BlueHawaii]

Pretty fast I would say it was just minutes

[healthabc]

acupuncture

[barndogmom]

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.

[Kia17]

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 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 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 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.

[Farooqji in reply to Despe]

i have sent a Privat message related to your question

[Despe in reply to Farooqji]

Thank you! Will answer tomorrow, time for bed.

[Gioc in reply to Despe]

😊me too!

[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 in reply to Kia17]

Kia,

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

[Kia17 in reply to Despe]

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

[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 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 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 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 in reply to Kia17]

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

[Kia17 in reply to rebtar]

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

[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 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.

[Erniediaz1018 in reply to Kia17]

Got it! Thank you

[pdkid in reply to Kia17]

Wow that is incredible. Wondering how long you have had parkinson's for and how old you are? Are you rigidity dominant? My dad is 69 and has had pd for 13 years now. He has dystonia, mainly when his meds have worn off. He currently takes his meds every 2.5 hours. If he is committed, do you think this program would be helpful for him?

[Kia17 in reply to pdkid]

I have had PD for years but diagnosed 3 years ago. I am rigidity dominat.

I think everybody can get benefits from Dr Farias programme.

[Vjbaiocco]

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.

[Kwinholt]

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

[Thal]

I wear silicone toe separators from Amazon.

[Manypony in reply to Thal]

I wear “correct toes” separators, they are a lifesaver

[Erniediaz1018 in reply to Manypony]

Link please.

[Manypony]

correcttoes.com. The socks rock too! I have a pair of toe separation sandals as well, ♥️ Them

[Erniediaz1018 in reply to Manypony]

Thank you.

[Erniediaz1018]

I have tremor dominant pd mainly on my right side. Slight toe curling in the past three months or so but only when sitting still. I’ve started walking at least 2 miles daily and that seems to help slightly but my left foot has started cramping in the past week or so. Thank you all for the very helpful experiences you all share in this lifesaving forum.

[chartist in reply to Erniediaz1018]

Hi Ernie,

You might try mag oil on the foot that cramps. My calves were cramping when I would walk my fastest so I had to slow down or suffer the consequences. I started applying mag oil to my calves before going for my daily walk and I was able to go to my fastest walking speed again without the calf cramps. Mag oil can also help a little for minor toe curling, but not for more severe toe curling. For that you will have to talk to Kia as I think he has found a way that resolved that issue for him.

Art

[Erniediaz1018 in reply to chartist]

Recommend one please, thanks Art

[chartist in reply to Erniediaz1018]

I make my own MO from flakes as it is very inexpensive that way and I make it for friends and family, but this should be sufficient :

vitacost.com/life-flo-pure-...

Art