Hi I have noticed my toes on my right foot have started to claw, has anybody else had this and how did they get support, my next visit to consultant not until May and my Parkinson's nurse has left.
I suffer from that. However, it only occurs when I am under medicated.
Can you phone your consultant's secretary and see if they can give you an earlier appointment?
I have had a problem with clawing in my right foot toes (particularly the middle one) for about 2 years. I have never put it down to PD, so you have made me think.
Irrespective of whether it is due or not due to PD I thoroughly recommend seeing a Podiatrist on the NHS. The lady I saw made a couple of inserts from a soft plastic that semi-hardens and fits between the offending toes and also underneath them. This has helped enormously. They are easily removable and easy to fit. Can't recommend this procedure for you specifically but it has worked well for me.
I'm not sure your consultant or PD nurse will be able to help.
Hope this info is useful.
My husband had 9 clawed toes which remained curled over most of the time.
He had them straightened surgically and had 6 weeks on crutches.
Once healed, his walking improved greatly.
After 5 years, 2 have clawed slightly but we were warned that could happen.
Only one night in hospital and a lot of benefit.
I have had an increasing amount of clawing to my toes for 6 years now. In fact it was because my toes started to claw that my other moans were listened to and I got a diagnosis.
At first I was told Sinemet would cure it, but don't start taking it until you really have to. But, for me, sinemet does not work.
Then I was sent for electrical conductivity tests and was told I have peripheral neuropathy. There are treatments for some forms of this, but not the sort I have. Probably my condition is a mixture of the two causes, I've been told different things by different neurologists.
The only surgery that has been mentioned to me, is to have my toes 'filleted' ie the bones taken out??!!
Goldengirl what exactly did they do to your husband?
The surgeon straightened his toes ( not sure what that entailed!) and inserted thin metal rods into them.
These stuck out of the end of his tiptoes about an inch. His feet were padded and bandaged and he had Velcro"shoes to wear for 6 weeks until the rods were removed.
His big toes were bent inwards before the op and these had stitches for about 2 inches down the sides.
It was faffy and no driving for 6 weeks.
To shower he had special plastic covers to put over it all.
There was no pain.
It was surprising how much his walking improved when his feet were flat in the floor!
2 have clawed again but that does happen sometimes. There are no guarantees.
perhaps you could ask to be referred to a foot surgeon as we did.
Thanks for the info golden girl. They are making boots for me to hold my heel straight, because the way my big toe is going, it is pulling my heel under.
It is difficult to know what causes the clawing...each case is different, I suppose.
I can't believe filleting your feet would help!
we tried special shoes and inserts but no improvement...
My husband finds that straightening the bones has improved everything enormously.
The surgeon says he will re -straighten the clawed ones if he wants but they aren't really bothering him .
I do hope you find some resolution.
I feel now that I am confident enough to ask for referral if things are not right and we feel specialist advice will help.
Our neurologist didn't really know about feet but the foot specialist offered a solution straight away.
Quick, whilst there is still the NHS!
this sounds to me like distonia this is a condition on its own as well as a pd symptom and it can occur if you are under or over medicated BUT it is treatable with apo-go injections some specialist and neuros are off the option to prescribe it sooner rather than later it is a powerful drug the reason i know about this is because I have it in its most serious form this is treatable with the apo-go pump i would suggest that anyone who has this problem calls their pd Dr's secretary and says they need an urgent med review.
exactly what happens to me is my left or right foot stars to claw then my right big tow extends upwards and then my right foot turns side ways so i end up walking on my ankle then it will spread to my right should dragging my head downwards so i end up with my head touching my shoulder, i have never ever let it go beyond that i dread to think what it would do then i hate it with a vengeance,
more info on the distonia society website.
good luck BB
thanks for all your comments/
I don't know anything about Dystonia but I assume that the clawing comes and goes.
My husband's toes became clawed and remained like that so that walking was difficult and the bent toes rubbed against his shoes causing sores.
I assume surgery is only useful in the permanent case.
Yes I believe so GG, I only found out about Distonia due to having to go into a off state due to my clinical trial I have been on.
I hope your husband has found the surgery to be effective.
Regards BB xx
wow reading the forum can be a real eye opener I am experiencing clawing in my left foot only seem to get it now and again so I have not really got concerned about it, I will now bring it up on my next neuro visit.
The fact that i have a lot of discomfort down my left side including neck pain, upper arm and lower back and now clawing I have put it all down to "normal" PD symptoms.
As I live in Germany I am due to start a rehab programme this month which involves lots of consultancies and treatments including gymnastics, pool work, massages etc all aimed at fully assessing my condition to determine if I can work again or if I will be forced into early retirement (I am 60 in April) I would be interested to know if they do this in the UK?
I think it may be interesting for other forum users just to see how PD is dealt with in another EU country.
Vorsprung durch tecknik☺
hope you all have a pleasant evening
as far as i am informed they do not do anything remotely like this which is a pity because it definitely sounds like you will be looked after.
one bit of advice if they offer you physio it extremely important make sure the physio is neurological trained if not they can cause you more problems.
The clawing in my toes is permanent and tight enough on my left foot to be causing problems with my skin getting sweaty and going cheesy( sorry ifn this is too much info folks) but I can still walk to the bus stop and cope with my own food shopping and it sems to me that you don't get things like apo go or the surgery until you are seriously immobile, until the treatment is nthe cheaper option, mere pain doesn't count. Sorry for the low mood, can't sleep.
This sounds awful Mosie.
We had no difficulty getting the surgery and my husband was not immobile.
Have you asked to be referred to a foot surgeon for advice?
We did and were referred straight away.
I think we waited about 6 weeks for an appointment and then about another 6 weeks for the op.
Please don't assume they will turn you down..
I agree with GG I am not immobile unless when the Distonia kicks in but with me it has the potentionl to spread over my whole body when mine kicks in i have not a jot of a chance to walk through it as the more I try the worse it gets.
And in this life if you don't ask you don't get.
I too get clawing of my right foot, this being the first symptom long before diagnosis. The podiatrist suggested a special insole would help. It does. It does not cure it, but walking is less difficult. I really notice the clawing when indoors as i do not wear the insole then, but it is irritating when the foot plays up at the same time as i am trying to guide a razor across my handsome face. It often claws when standing still waiting for the bus, so now i try and lean against a convenient upright with the weight off my foot. (i.e. direct weight onto the foot, especially when concentrating makes the clawing worse)
I've got a neurology appointment coming up early next month so will see what the reactions are then.
I have the same problems standing still as hatter. Sometimes feel I am turning into a bird at the bus stop, my foot is trying to grip onto a branch.