Have you developed dyskenesia and, if so, how troublesome and/or noticeable is it?

[Mark1]

Have any of you been on sinemet for many years without developing dyskenesia? Those of you that have it, is it periodic depending on your meds, or is it continual? Does it inhibit you socially and how do you deal with it?

[Dennis]

No. Still suffer with dyskenesia.

It is periodic depending on meds but it is also continual as I can take my meds and still have dyskenesia.

Yes. It inhibits me socially.

Neurologist increased meds until I have reached the med limit. Neurologist suggested another med but could not get it approved after to denial appeals.

I carefully plan social events and plan for every negative option. ~Dennis

[etterus]

I've been on it for 6 years. Usually have some dyskinesias everyday when I'm wearing off. Sometimes my foot swings so much it hurts.

[larry33b]

I've been on Sinemet for nearly 11 years with a daily dose of 5 25/250 cabidpa/levadopa and 3 Amantadine with no dyski's. We are all different and I am very lucky.

[PatV]

Yes, I'm stiff as a zombie until meds kick in then my left (affected ) leg jumps all over . I have to sit down and let it. Also arms do weird things -- I try to do one thing and they do another . 10 yrs with PD, 8 yrs dx. , 6 on sinemet. no tremor

[jmezg]

I was dx'd 2/99, started sinemet in 2000, dyskinesia about 2 years ago. One month ago doc put me on drug holiday one day per week and it helps, but not worth going w/o sinemet for one day which is intolerable. My dyskinesia is bad but not as bad as going w/o sinemet for 24 hours.

[cabbagecottage]

My husband has been on Sinemet for 5 years and suddenly started to have problems with nodding off and runny eyes /drooling .....I did wonder if he was on toohigh a dose .. He is taking sinemet plus x4 and sinemet CR at night

[Kaylee]

I would like to share this video of how bad my dyskenesia was before DBS, There are still times that it is bad but stress and missing meds or taking them to soon brings it on. DBS is not a cure and there is no guarantee it will work for all.

youtube.com/watch?v=g-uK7WU...(Not working as expected?)

[jeaniegal in reply to Kaylee]

That s so moving! Thanks for sharing.

[Brooke]

Thank you so much for sharing! you have given us something positive to think about. God bless you.

[goose63058]

I am dyskinetic when I;m under stress, at the Dr out for dinnern on the phone. I had dbs 2 years ago when I'm dancong around i turn on myn batteries and I stop dancing instantaniacely. But I can't walk very well.

[hanuman]

I have a lot of dyskinesia, which particualarly affects my walking. I have developed what the neurologist calls a 'peacock gait' where the leg raises up involuntarily, sometimes swinging across the other. Sometimes it's just the right over the left and sometimes both. It happens when the medication is kicking in, running out and can also happen at any time during the medication cycle. It's difficult to manage and is quite disabling, worse than than the disease itself.

I'm not sutitable for dbs as my speech is also badly affected and apparently that contraindicates dbs. It's quite a challenge!