Does anyone have any problems with involuntary toe curling??
Hi BarbH
I suffered greatly with toe curling in my right foot and I got Botox injections every three to four months into my foot for this. The last time I saw the Doctor she decided to not give me an injection to see how things would go and so far everything has been fine and I don’t have any more problems concerning my toes curling. Ask your Parkinsons nurse about this and hopefully it will be available to you. I know everyone is different and what works for one may not work for the other but it’s worth a try. I hope this helps you
Kind Regards
Janny
Hi @BarbH, 
I’m glad to see that Janny has been able to offer some advice - I’m sure you’ll hear from other members with their own personal experiences at some point too.
I just wanted to add that we have a lot of information on foot issues caused by Parkinson’s along with tips and contacts that I’m sure will be helpful. You can find this information here: https://www.parkinsons.org.uk/information-and-support/foot-care
Please remember that you can always give our free and confidential helpline a call if you need further support on this. Do give us a call on 0808 800 0303.
Best wishes,
Reah
Thank you so much Janny for the advice. Very much appreciated.
Barb
Thank you Reah.
Barb
1 Like
Hi Barb,
I suffered very badly from toe curling…it was pure agony-- particularly in winter when wearing closed shoes or booots becuase the toes just curled under. I used to have to stop in the street & find a bench or step & remove my shoe becuase it was tortuous. I didin’t care how i looked ecasue it was so painful. My nurse upped my medication & luckily, I haven’t had day symptoms. I do get pins & neeedles. I’v e been told it;s when the dopamine is wearing off
Petsa
My tioes curl badly in the morning befre I have taken my stalevo and sometimes at other times too. Used to be just right foot, now btoh feet. Not at all painful though… I also get dyskinesia.when stalevo is wearing off , if I am eating or typing my feet and legs move around under the table… Neurologist says I am on maximum dose, stalevo 200/50/200 four times a day… Any suggestions of anything differnt to try ?
Hi Janny,
Just found your advice about toe curling. Three toes on my pd side started curling intermittently a while ago. For a time I was able to push them straight, use foot wear with firm soles and “get on with life”. I mentioned it to PD nurse who referred me for physio - currently on waiting list.
But lately toes are curling tighter,more regularly and for longer. Resulting in hardened skin and corns. I’ve been concentrating on my legs and keeping walking. Never gave my poor feet a thought till now - silly me!
Sometimes I try walking on my heel to avoid my toes touching the floor - it doesn’t work of course.
I’m desperate to be able to keep walking with my dog - it’s my exercise.
Could you tell me if you still have botox injections and is it available on nhs?
I was diagnosed 2016 and am on sinemet. Thanks Daffy
Hi Daffy
I first got Botox on my right foot about 3 years ago and got it every 2/3 months thereafter in total I got injections in my foot about 4/5 times (which I would say were very uncomfortable but well worth it for the end result) I visited the “foot Dr” as I call her during lock down and she decided not to give me any injections and that was nearly a year ago and so far fingers crossed my toes have been fine and don’t curl anymore. I had much the same symptoms as you and due to my toes curling under my big toe on my right foot became infected and thats when I was sent to see Dr Nelson and I’m delighted with the results. Unfortunately my left foot toes now curl under and my left foot also turns in and I walk on the side of my left foot and now it looks like my leg is turning in also…I have an appointment to see Dr Nelson on the 30th of this month so fingers crossed that she will be able to help me with this also. Yes I get this service on the NHS and advise you to ask your Parkinson nurse/Neurologist about this and hope it’s available in your area as I appreciate not all services are available across the country. Also what works for me Parkinson’s wise may not work for you but I sincerely hope it does. Let me know how you get on and I will keep you posted on how I get on when I go back on the 30th. Take care
Kind Regards
Janny
Hi Janny,
Thanks for your quick reply. It’s good to hear from someone with experience of the same problem. Hopefully I’ll hear about a physio appointment this month. Supposed to be a Parkinson’s physiotherapist. If not the letter says to make a chasing up phone call. I’ll see how that goes and then if it’s still a problem maybe start asking about botox treatment.
As you say we all experience Parkinson’s differently and not all treatments work for everyone.
Sorry to hear you still have foot problems. Unfortunately that’s Parkinson’s isn’t it - fix one thing and another pops up. Best wishes for your appointment on the 30th.
It’s a beautiful sunny day here and my toes are straight for now so I think I’ll take the dog out.
Kind Regards
Daffy
How many botox treatments before it worked for your toes?