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yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 8/5/2005 9:57 AM (GMT -6)   
Has Anyone out there with P.D. experienced or is experiencing Toe curling? I curl the left large toe to painfull extremes.My neurologist doesn't know if it is caused by P.D.or the meds I'm on,which are mirapex and stalevo.
One option is to have the tendons of the toe cut;and one I have not ruled out.I would appreciate hearing from anyone with similar problem  Thank you.Ed
Ed


Monarto
New Member


Date Joined Aug 2005
Total Posts : 2
   Posted 8/6/2005 8:51 PM (GMT -6)   
Hi,
 
I have had PD for 7 years (diagnosed that is) and my feet have been really bad over past 6-8 months. My left toes and foot curl very much to left. The right foot curves left. I am on Madopar and Cabaser. I find that if I lightly stroke the feet they relax, but you cannot keep that up all of the time of course.
 
Any ideas out there?

Monarto
New Member


Date Joined Aug 2005
Total Posts : 2
   Posted 8/6/2005 8:52 PM (GMT -6)   
Sorry, left foot curves to right

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 8/7/2005 5:35 AM (GMT -6)   
Monarto,

Thanks for the reply,and welcome to healing well.Ed
Ed


lizzy4451
Forum Moderator


Date Joined Jun 2005
Total Posts : 320
   Posted 8/12/2005 1:09 AM (GMT -6)   
Ed, I have PD and experience toe curling. I know of others with PD who also have that experience. I notice mine primarily when my meds are wearing off. It's frustrating, hurts and makes it minimally painful to drive (toes on right side curl, which is side affected by PD) since gas and brake are on the right. But ... I still drive and see myself doing so for a few years.
 
lizzy4451
Life is a dance. Don't sit it out. --- H. Jackson Brown


GeneralCatBurd
New Member


Date Joined Aug 2005
Total Posts : 8
   Posted 8/27/2005 11:03 AM (GMT -6)   
I am not the moral majority or minority so i do not mean to lecture but I would be careful not to write those things. Several states have new driving laws against reekless endangerment.

Leg, foot and toe curling and cramping are usually associated with PD directly and then complicated by the agonists. You'll find after time you might have several tricks and methods for stopping them.

Margaret 6
Regular Member


Date Joined Jul 2005
Total Posts : 22
   Posted 9/12/2005 7:05 PM (GMT -6)   
yekkimo said...
Has Anyone out there with P.D. experienced or is experiencing Toe curling? I curl the left large toe to painfull extremes.My neurologist doesn't know if it is caused by P.D.or the meds I'm on,which are mirapex and stalevo.
One option is to have the tendons of the toe cut;and one I have not ruled out.I would appreciate hearing from anyone with similar problem  Thank you.Ed

Dear Ed, I have been diagnosed with PD and I think I've had it about a year now.    I also have cramping on my left foot as that is the side most affected.    I just had my meds changed from requip to sinemet.  I take it 3 times a day.   I pray to God that it doesn't get any worse, as I am very very scared by all of this.I  understand that this is quite common with PD?     If this is the only sypmptom we ever get, I consider us lucky.   How old are you?   How long have you had PD and how long have you been on these meds?   Thanks
Margaret

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 9/12/2005 8:05 PM (GMT -6)   
Margaret,
Welcome to healing well,I have had PD for 7 years.I am on Mirapex and Stalevo(sinemet comtan combo)Wanted to welcome you and drop a short note .I'm on my way to bed and will talk later.Just wanted you to know we are here and we listen.stay well ED
Ed


Margaret 6
Regular Member


Date Joined Jul 2005
Total Posts : 22
   Posted 9/13/2005 4:01 PM (GMT -6)   
Thank you for the welcome, I appreciate it. I just came back from Mayo and had a wonderful nurologist named Dr. J.Eric Ashlskog from the Mayo Clinic Section of Movement Disorders. He was wonderful. He told me that I have the very beginning of Parkinsons, but I am still very worried about it.Stay well and write when you can,
Margaret

Post Edited By Moderator (yekkimo) : 9/13/2005 5:19:18 PM (GMT-6)


yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 9/13/2005 6:31 PM (GMT -6)   
Margaret,

I checked your Bio and noticed that your e mail address was listed as unavailable.So i took the liberty to edit it out of your post.if you want to list it in the post I won't delete it the second time.I have to post this cause i didn't save the address.We have had some minor problems with spammers and for lack of a better term inconsiderates.So I try and keep them at bay .Stay well,and the light is always on.Ed ps don't worry about PD stress just aggravates it.
Ed


Margaret 6
Regular Member


Date Joined Jul 2005
Total Posts : 22
   Posted 9/14/2005 1:48 PM (GMT -6)   
Thank you for your response Ed.  
 
MY email address is shimmons2003@yahoo.com.    I am unable to get any emails thru peoplepc for several days now, don't know why. tongue yeah

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 9/14/2005 7:27 PM (GMT -6)   
Margaret

Wish you the best stay well.Ed
Ed


yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 9/14/2005 7:34 PM (GMT -6)   
Lizzey 4451

Sorry I missed your post way back on the 12 of Aug.A belated thankyou for your response.Guess I'm having brain cramps along with the leg cramps.Hope all is well with you.and a thousand pardons stay well,and in touch.Ed
Ed


Spirit U
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/12/2011 5:53 PM (GMT -6)   
Hi! I'm a new member as of today, with the toes curling on both feet. My pd is left sided but is slowly moving to the right. The curl/cramps are stronger in my right toes, pain so bad makes you cry. i can't walk or anything and when they both at the same time (which is the norm anymore) forget about it. When the meds are wearing off like when you get out of bed in the morning and its shuffle time. Try to keep it short so much and really no one to discuss it with.
I take Sinemet cr combo 4xs a day and Azilect.05 once a day. I'm on my second Nero. that for pd, not sure how long I had it , dr. after dr. had no clue so they kept passing me to another Dr. ( Most of you prob. relate to this.)
Meds seem to be waring of quicker and I have a reaction to stronger dose of Azilec. Thank you. Spirt

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 4/12/2011 7:10 PM (GMT -6)   
Spirit,Have you seen a foot Dr.Podiatrist I guess they are called?Your toes can be released by cutting the tendon in the toe.This is an option that might work in your case.Wish you the best.Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex



support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.

poetrygirl
Regular Member


Date Joined Jan 2011
Total Posts : 22
   Posted 4/22/2011 10:58 PM (GMT -6)   
Hi Ed,
I've been diagnosed for almost 2 years and have recently been experiencing toe curling on the right side, which is my affected side. It happens in the morning before I take my meds, but it's worse when I'm walking into work, which is puzzling to my neurologist since it's well after I've taken them (I'm on Sinemet, Comtan, Ropinirole and Amantadine 3x/day). They curl under so I'm walking on the tops of my toes and it's very painful. I stop walking several times and take some time to relax my foot and toes, but as soon as I start walking again, they curl under, so I end up walking with much pain and difficulty and it takes quite a while to get to where I need to be. It always seems to come on at the most inconvenient times and can be quite embarrassing, especially when someone asks you if you need a wheelchair.

What did you end up doing for the this problem?

Take care,
Poetrygirl

Spirit U
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/27/2011 1:54 PM (GMT -6)   
Hi Ed.
Thanks for the information. about 2 yrs ago I had toe surgery on my left foot so I do have a ped. doctor.

S

Spirit U
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 4/27/2011 2:43 PM (GMT -6)   
Hi Poetrygirl.

I'm going through same toe camps you get except on both feet (my pd is left but right foot jumps in and is the worst on cramping Go figure!. So far your the closest response about the walking( rather frozen in pain). Trying to relax is near impossible. and if you don't want to fall flat on you face better stop, wait, wait , more waiting and just maybe you can get going with out to much embarisment or injury. Exercise ( stretching the feet and legs) seems to help, but sometimes here they come right in the middle.

I don't wish this on my worst enemy, but its good to find someone out there who understands and you don't fee quite so alone...

Take care
Spirit

poetrygirl
Regular Member


Date Joined Jan 2011
Total Posts : 22
   Posted 4/27/2011 10:36 PM (GMT -6)   
Hi Spirit,
Thanks for letting me know I'm not alone. It really helps to know that, although like you said, I wouldn't wish this on anyone. How far into your diagnosis did this start for you? I started meds right away, and I really wasn't expecting some of these problems so early into my diagnosis - it will be 2 years in September. I've read about people who didn't need meds for a few years and had fairly mild symptoms initially. I've felt pretty horrible from the beginning, especially with head pressure and neck stiffness, and now the toe curling. But I know that others are worse off, so I shouldn't be complaining.

I saw in one of your earlier posts that your meds are wearing off quicker now. Mine are too, but I don't want to have to increase the meds. I'm on Sinemet, Ropinirole, Comtan and Amantadine 3x/day. How long do yours last? Maybe I have too high of expectations.

I hope you find an answer to your toe curling problem. If you do, let me know, and I'll do the same for you.

I appreciate the chance to vent on this forum to others who understand. I don't think you can unless you're going through it.

Take care.

Poetrygirl

yekkimo
Forum Moderator


Date Joined Apr 2003
Total Posts : 1279
   Posted 4/28/2011 6:53 AM (GMT -6)   
Hi, In my case an increasein stalevo has seemed to help.I still have toe curling which gets worse when under stress.If I find a solution to the problem I'll shout it from the hilltops.Wish you the best.Ed
Ed-Moderator Parkinson's disease forum.
Diagnosed with Parkinson's Disease in 1998.As long as I can fish life is good.Keep a great attitude.It benefits all.Meds:Stalevo,Mirapex



support Healing Well thru the sponsors and with donations.The light is always on stay well,and listen to your neurologist.

reverett123
New Member


Date Joined May 2011
Total Posts : 1
   Posted 5/20/2011 4:53 PM (GMT -6)   
Curly toes and general "foot warp" are pretty common among PWP. I have had them off and on for the last five years or so. I haven't read anything that seemed definitive but will share what I know.

Mine are the type that strike when I first get up. They come along about one morning out of two and last about fifteen minutes if I just relax and wait.

For me, first thing in the morning means any where from 3 AM to 6 AM depending on how the gods are feeling. This is important because when I get up has a lot to do with whether I have them or not. At that hour of the day there is a lot going on as our bodies get ready to face the world. Among other things, we are pumping out hormones such as adrenaline and cortisol. Another time that we pump these out is when we are stressed. When we are trying to walk, for example.

Those early morning hormones surge through the body but then settle down and our toes uncurl. If we sleep later, then we never know what we missed. If we get up earlier, I suspect that our activity levels mask all this.

As to what helps mine, sitting quietly in the dark with soft music helps a lot. I try to take my meds in the dark first to minimize stress. And drink lots of water and be sure you get enough potassium, calcium, and magnesium, too. Good luck.

TASHIE
New Member


Date Joined May 2011
Total Posts : 3
   Posted 5/22/2011 11:38 AM (GMT -6)   
I HAVE TOE CURLING AND FOOT CRAMPING. I HAVE HAD DBS SURGERY AND AM NOT TAKING TYPICAL MEDS FOR PD, BUT I DO TAKE ANXIETY MEDS. FEET HURT SO BAD THAT I CAN'T WALK MORE THAN TEN MINUTES WITHOUT REST.

Spirit U
New Member


Date Joined Apr 2011
Total Posts : 4
   Posted 5/26/2011 10:46 PM (GMT -6)   
Poetrygirl,

The toe curling started about a year ago. Occasionally at first left foot which is my pd side. They Increased about six mouths ago till my right foot joined in. That one is the most painful, Seems I can control the left, work it out sooner but the right a mind of its own...unbelievable pain and it stops when it wants to. You just want to sit down anywhere you can and try working it out, usually they come simutaiously and you are not moving thats for sure, brings you to tears. I put sneakers on in the morning but they don't work all that well. I've been doing stretches and they help. We are sort of like mirrors with our symptoms.
Oct of 2007 when I started the meds. It took docs some 21/2 years to decide what was wrong with me. Too many minds and not enough sense.
Hope things get better and will keep in touch. I don't get on so often...computer irks me at times...especially when i'm off. Take care Spirit

poetrygirl
Regular Member


Date Joined Jan 2011
Total Posts : 22
   Posted 5/29/2011 6:18 PM (GMT -6)   
Hi Spirit,
I don't get on very often either - I sit in front of a computer all day at work and the last thing I want to do is get on the computer at home. But it's the holiday weekend , , ,.

So far it's only the right side for me. I started taking my meds earlier in the morning, so it's been a little better walking into work. I still get toe curling, but usually it's at home where it's not embarrasing. I know what you mean about the pain. It's unbelievable! And it's so frustrating when I've forgotten something upstairs and I have to go back up again. It's almost impossible to put shoes on and I just have to wait it out.

I've also noticed lately that my foot turns out when the toe cramps come, so sometimes I'm walking on the right side of my right foot, which, combined with toe curling is even more painful.

Do you find that it gets worse the more you think about it and the more self-conscious you are? If it happens in public, I find that it does.

I hope you find something that works for you.

Take care.

Poetrygirl
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