I am 63 PD diag 2 yrs ago, Now I struggle with uncontrolled clinching of left foot, curling of left toes when stressed like when driving.

[finlander]

Try to force myself to relax but in seconds, I am clinching again. Now, my left hamstring is always sore and will cramp up, left toes swelled and feel numb. Hard to sleep, hurts to walk. I take sinement and selegiline only. What can I do?

[ccobroussard]

congratulations and welcome to my world. i was diagnosed 7 years ago at the age of 45 with parkinsons and i can't even wear shoes most of the time. my toes curl so bad i get blisters on the top of them from rubbing on the top of my shoes. started with my right foot toes and then progressed to my right ankle, which now curls in to the left and then is now spreading to my left foot toes. I am taking stalevo, azilect and amanatidine but I also get injections of Botox in my right foot and right calf and that was helping quite a bit for about 18 months and now trying to schedule my DBS surgery. Good Luck and ask about Botox injections

[fishinggirl in reply to ccobroussard]

Just had my first Botox for the same symptoms. Felt great for 10 days, now starting to feel the symptoms again but not bad. Dr said I had the lowest strength, will need stronger next time. Hope to get a minimum of 18 months from this treatment.

[Hidden]

Always talk to your Neurologist first!!!!!

Blessings,

Carol

[Parkinson_Schmarkinson]

I'm 59, dx 2 years. Three months ago I developed a similar symptom. Episodes tend to start a few hours after my Sinemet dose; may last 15-30 minutes. My neurologist said it was a form of diskenesia and prescibed Amantadine. I bought it but have not used it yet…I'm just leery of taking another med. The frequency of the episodes dimiinshed for a while but it is coming back.

My foot episodes also give me the sensation that I am wearing huge fluffy slippers, making it hard to walk. I have to steel myself to "walk through it". It started on the left side but the right foot seems to want to get in on the act. I have not had problems with my hamstrings.

The symptom often appears when I am standing iin the shower. It is uncomfortable but does not exactly hurt. I just wish it would go away.

So I'm sorry, Finlander, I don't have a solution, but I have the same symptom. For whatever that's worth.

[CassieB in reply to Parkinson_Schmarkinson]

I understand where your coming from on taking more medication, however I do agree with your doctor that it is a form of dyskinesia.

I take Amantadine and it helps me with dyskinesia.

[ShakeDaddy in reply to CassieB]

My Dr. has had me on amantadine 3xdaily and it does help my dyskinesia, neck stiffness and slow walking. I was diagnosed 12 yrs ago, now I am 60yo. Only thing is I cannot take capsules of amantadine (they stick in my throat, dissolve and burn terribly! I choke feeling I am going to die...seriously!! My neuro gave me raspberry flavored liquid that I mix in juice and I'm good to go! Good luck!! S.D.

[finlander in reply to Parkinson_Schmarkinson]

It's worth a lot just to know I'm not alone in this. I too feel as though I have something fluffy stuck in my shoe, under the two larger toes of my left foot. Don't have it on the right side and hope to heck I don't get it there. The good news is that in the last few days, I have found that it goes away while pedaling on a spin bike vigorously for 15 minutes or so. And the numbness doesn't return as I continue to spin. The other good thing is that the spinning seems to have somewhat alleviated the left hamstring pain and cramping, although it is temporary. I am gong to try to dedicate myself to at least 3 to 5 days per week on the bike and hope for the best.

[olpilot in reply to finlander]

I a 61 dxabout 2 yeats ago, about a year ago I started to have terrible leg and foot cramps, toe doing things toes should not do. My neuro saidd most likely dystonia and gave me amantadine, what a God send it was. I can take pain pretty well, but this brought me to tears the amantadine helped so much it was amazing. However like most things with this damn disease nothing lasts forever, the pain and cramps are increasing. Now I take morphine extended release to try to sleep, plus a muscle relaxer. Rarely sleep more than 4 hours a night. All in all the amantadine was and is a big help, I hope.......

[fishinggirl in reply to Parkinson_Schmarkinson]

I take amanadatine for internal tremors and it works great for that. I just started botox and so far so good

[shall1019]

I have no answer either but share the toe curling, blister problem. I take only Azilect.

[roma]

i have this problem too. i have found different ways to alleviate it a bit.

I have bought an automatic car and when i am driving any distance, take off my left shoe. my chiropodist also made some suggestions-wear socks inside out, rub toe with vaseline to reduce friction. She also gave me a soft rubber contraption which fits over your middle toe and there is a rubber bit underneath which stops your toes from curling as much. you can buy them in a pharmacy.

Hope this helps a bit!

[CassieB]

I have been on PD medication for over 10 years, I know how painful foot dystonia can be.

I read all of the good advise you were given. I would suggest you talk with your doctor. To better inform your doctor here are a few questions to ask yourself 1st .

Do you begin 1st thing in the morning with the foot dystonia before your medication has a chance to work?

When during the day does it occur in comparrison to your medication timing?

"like when driving"?

Does this happen only in stressful situations?

Are you getting enough exercise? like yoga or tia chi?

The thing that I have learned over the past 10 years is that the doctor patient relationship is 50-50 I will get out of it as much as I put into it.

I hope this helps you Good luck and God Bless.

[export]

I had that problem for years , can't think when or why it stop't .

I think it must be the DBS ?

yours EXPORT.

[Pete-1]

For ages I've been trying to find a satisfactory answer to the question of what is the difference between Dystonia and Cramp. Is there anyone out there who can supply a definitive answer?

Is the answer derived from the cause or the symptoms or both?

[PatV in reply to Pete-1]

Definitely the cause. My subjective description of the difference is that a cramp pulls the muscle in and that dystonia ("bad muscle tone") is the opposite, the muscle is overworking . For example my inner thigh muscle becomes hard as a rock and pulls both my knee and affects the lower ab as well as causing tendonitis. I have morning toe curling that keeps me from walking normally until I can tie on some sneakers and also stand on tip toe. Maybe I should get some high heeled sneakers!

[Pete-1 in reply to PatV]

Thank you for your reply. Do you also know what causes Dystonia.

[PatV in reply to Pete-1]

If I did I'd get the Nobel prize for Medicine

[Pete-1 in reply to PatV]

So it's a mystery to all then.

[Hikoi in reply to Pete-1]

Not totally Pete. There is on dystonia and off dystonia, different causes and treatment approaches.

parkinsons.org.uk/Docs/FS43...

[Pete-1 in reply to Hikoi]

Thanks for the link.

[etterus in reply to Pete-1]

Cramps are similar but are not a sign of brainstem pathology such as dystonia. Anyone can get cramps.

[etterus]

I try to stretch my heelcords by doing the runners calf stretching at the bathroom sink.. also I take my toes in my hands and stretch them up holding 5-10 secs.

[NanCyclist]

I used to have the cramps that you describe until I started the pedaling program. See pedalingforparkinsonss.org for more information. Since then I've been pretty much cramp free for the last four years.

[PatV in reply to NanCyclist]

I'd love to do this. wonder if it's in NYC

[NanCyclist]

All the programs have started because of patient interest. You can contact your local Y and see if they are interested in having such a program. If so, either you or someone from the wife can contact me at [e-mail] and I'll help you set up the program. If not, you can do the cycling on your own as I do. I have my bike set up on a trainer in the basement and I ride for an hour almost every day.

[finlander in reply to NanCyclist]

This sounds like a great idea, not just for me but for all the kinds folks who were thoughtful enough to respond to my plea. The biking and exercise information contained on PedalingforParkinsons.org may well be of critical significance for all of us. I will consult my doctor and begin to attack this with stretching the toes as suggested. I will begin faithfully and intensively using the spin bike at my local rec center Thank you all.

[NanCyclist]

You made my day. Due to the cycling program I've been able to climb Mount Kilimanjaro, hike to the Annapurna base camp, and ride my bike across Iowa 3 times. if you check my Facebook page, Nan Little, you'll see me with my newly destroyed cross-country ski. What the heck, I spent 4 days snowshoeing instead. I was diagnosed with Parkinson's five years ago and I'm in better shape now than I was then. I find it very difficult to brush my teeth however.

Have a great day.

[PatrickW]

WISH I had an answer for you. I have the same problem. Yesterday I had such a fierce cramp in my hand never felt a pain like that before - Hand contorted into such a strange way it was scary to look at. i eat bananas for the cramps.

[margie]

Please talk to a neurologist that specializes in movement disorders. My toes curled under and then my feet turned inwards to a point that it felt like someone was trying to twist my feet off my leg. The pain was worse than any cramps I have had.I was Diagnosed with dystonia and for the past 2 years, I see a Neurologist that specializes in pain . He used a machine placing small needles in my feet and legs measuring my pain. I continue to receive Botox injections which helps. I am 63 and have Pd for 20 plus years. I had tried all kinds of food, exercises, vitamins but nothing worked for me. I also have a motorized pedals that helps loosen me up. Please remember, although we have PD and other ailments, we are different and you should check with your doctor first.

[finlander in reply to margie]

My heart goes out to you for all you have gone through. My problems are quite minor compared to what you have had to endure. I hope that your current treatment is successful.

[srarndt]

The toes curling under and causing difficulty walking was a real problem for me. I tried stretching, exercising, walking backwards, exercycling, different meds, more meds, fewer meds, etc. etc. Nothing provided more than temporary help until I had my DBS implants. That night in the recovery room, I had relief from the toe issues for the first time in years. And that was before they installed the neuro transmitter as well! I feel sooo lucky and blessed!

Steve

Bisbee, AZ

[finlander in reply to srarndt]

It is great to hear that you finally found a solution, although it sounds like it was unexpected.

[srarndt]

My neurologist seemed confident the DBS might help me, my neurosurgeon was rather reluctant to commit (out loud anyway) and me, I was bouncing back and forth between hoping against hope and dreading the thought that it might not help my toes at all. So, Fin, i do not know how to answer whether it was unexpected. After the procedure the nuerosurgeon did spill the beans that he never had a doubt but that he felt it better not to get my hopes up.

Best wishes.

Steve

Bisbee, AZ

[jebbers]

I've continually had the same thing. Often have to drive with my foot up on the dash to keep the toes uncurled (yeah I look like an idiot, especially when I'm listening to a funny book on CD and laughing out loud). anyway, botox injections have helped in the past.