sharing my 2 cents...

[tomroc]

I've had PD for 3 yrs diagnosed, maybe 5 all toll. I'll be 70 in Nov, and my toes curl all the time on my rt effected side for many reasons. Med on and off, going in or wearing off. If I stuck to the proper schedule all would be fine.I take250/100 Sinimet 4 times a day, and 2 250 selegiline a day. Asiltec made me sick. A friend in group had Botox done in Boston.In 3 days, fine. But ever 3 months must redo. Another friend in group has had 2 DBS surgerys , 1 each yr at Lahey in Ma. She't great, 1 pill a day from 10 and no problems. So we've seen a surgery done on cd and the science to great. I'm glad if no other drugs are out in the near future, I can fall back on DBS and be comfortable. Any with please ask away, we can all share...TOM

[soup]

Do you stick to a regular schedule of medication? I wasn't sure from your post?

[tomroc in reply to soup]

No but I should. I think i'm my on enemy. I'm try to keep a log so I can keep the cramping to A MIN.

[soup in reply to tomroc]

Can you set an alarm on your phone to remind you? It's not worth rushing in to other treatments until you can decide if it is your usual drugs that are wearing off and causing it.

[nelo23 in reply to soup]

I use a free app on my phone to remind me. MEDISAFE

[jrg54321]

I have that toe curling in my right foot when I ride my bike and my heart rate gets up above 133. I'm 43, dx'ed for two years. On azilect and inosine. Magnesium supplements didn't help. I am trying to up my potassium intake. Not sure if that will help.

[johntPM]

My regimen is flexible. I take 1mg rasagiline and 8mg ropinirole ER in the morning. These form a foundation. On top of this I take 4 or 5 or (rarely 6) Stalevo 75mg as I need them, or, more precisely at a time such that they kick in just when I'll need them. It works for me. I am 12 years post-diagnosis.

I find that toe curling responds well to L/C.

To understand the issues search for articles on the pharmacokinetics and pharmacodynamics of your Parkinson's drugs. You might also like to use an app that I've written that produces a graph of your levodopa during the day.

parkinsonsmeasurement.org/

John

[Lionore]

I'm 2.5 post diagnosis, curling toes on left side, taking Rasagiline 1 mg daily and C/L 25/100 three times daily. I do not think that the C/L, which started six weeks ago, helps the toe curling What does help is exercising the toes by standing on tiptoe, walking consciously even if initially awkward and painful, and wearing yoga toes one hour a day.

[tid1]

My toes were curling in one foot. Also muscles were pulling in my foot forcing me to walk on the outside edge of my foot, which was very painful. My doctor said it was dystonia. I solved the problem myself by walking on a treadmill that has rails on both sides to hold on to. This loosened up the muscles that were cramping. I started very slowly and have worked up to a speed of about an 18 minute mile, which is a fast walk. I have to walk the treadmill in slipper socks (the kind with the rubber dots on the bottom like they give you in the hospital). Barefoot would probably also work but I haven't tried it. Walking in slipper socks forces more weight on my entire foot and doesn't allow my toes to curl as they do in shoes. The faster pace also keeps my toes from curling as they don't have time to curl between steps. I also wear slipper socks around the house.

My neurologist also suggested that I should wear flat sandals when I am out of the house when the weather permits - but not flip flops as your toes naturally curl to grip flip flops. This seems to help too. Not sure what I will do this winter? Maybe I will be one of those strange people that wears sandals with socks!

[tid1 in reply to tid1]

As an update to this I have found another exercise that really helps with my toes curling and stiffness in my affected foot. When I am waiting for the microwave I hold onto the kitchen counter and go up on my toes and then back down - about 25-30 times. Yes it hurts, but it has really helped loosen the muscles in my foot and my toes rarely curl now, Hope this helps you too!

[hanifab23 in reply to tid1]

how do you do that

[tid1 in reply to hanifab23]

I hold onto the counter for balance. Then I slowly roll up on the balls of my feet and then up more so I am standing on my toes. Going up slowly and placing my weight on my toes forces my toes to uncurl and loosens the muscles that are forcing them to curl under. They might not uncurl much at first, but keep doing it as much as you can and the muscles should loosen up.

[JohnPepper]

Your toes curling sounds like Dystonia to me. It is very common with Pd. The DBS is not reversible and it does nothing to slow down the progression of Pd. It also does not stop or hide all the symptoms.

Have you thought of ding energetic exercise yet? It is the only proven way of slowing down or eve reversing the Pd. Loo at my profile to see my Pd history.

[GeoffWC in reply to JohnPepper]

Can you point me to more info on ding energetic excercise?

[GeoffWC in reply to GeoffWC]

I am 60 and was diagnosed about 9 years ago and for the past 2 years have been exercising using an interval training method developed specifically for PD and have experienced very good results in that on average my PD symptoms overall have reduced considerably to those I experienced 4-5 years after being diagnosed.

[jrg54321 in reply to GeoffWC]

Can you share more info on the interval training you are doing?

[GeoffWC in reply to jrg54321]

Sure. You can have a look at some videos of some of the PD specific exercises at m.youtube.com/watch?v=OJ4cL...(Not working as expected?)

[JohnPepper in reply to GeoffWC]

I am unable, time-wise, to give you lots of nfo on exercise, but you can go to my website - reverseparkinsons.net and read a whole lot on the subject and lots of other interesting articles.