Hi I am becoming increasingly aware, although no one has said that they notice, that I feel like I am writhing when sitting still particularly this evening when we were out for a meal in a local restaurant, I also lick and bite my bottom lip. I'm not really aware of the lip biting until I feel how sore my lip is.

I want to ask if anyone with me notices it but then again I don't because I know I will feel even more self-conscious  about it if I do.

Been diagnosed 10 years plus anyone else have this problem ?

Hi newdidit,

I'm sure someone will be along to respond soon, but please remember if it helps you can also give us a call on 0808 800 0303 and we can get a nurse to give you a call? Or if you haven't already it might help to speak to your GP or specialist about this and what might help?

I hope this helps.

Take care,




It sounds like Dyskenesia, a known side effect of Levadopa. I was Dx 6 years ago and have recently started getting the same symptoms. Tends to strike in the afternoons mostly.




MY jerking stated as withering especiallywhen still.I found in looking over early videos I took a common problem.I was pill rolling which kept them going.My left hand is dominant and also I get dystonia onlyin my left thumb.I would like to hear from others if they also experience this.I also now get pain beofre the writhering.levadopa helps,even ibuprofen 


coolCaroline is  very very correct , its almost 110% correct in fact  its DYSKI or Diiskinesia Its not  nice my friend and  annoys the  hell out  of  me, im sitting here  typing  this and my  legs boody, see what I mean my  boooody arms  legs sorry  been  there,  head are all twitching its  worse  if Im about to eat a  tasty meal  or if im  too cold  or  too hot or hospital visits in fact anything which is emotional set  me  off, i did  get  some  relief my  wearing glasses with  blue  lenses  ,"no  kidding, I  had about three month of  no  dyski,  ut as any drug I  have become tolerant of this solution and  onl  get medium relief  now,  but  you  may  get  more everyones different. if   you  go  to  search and  type in PARKINSONS and BLUE  LENSES,you can see   for  yourself

                                                               Best wishes        FED

Hi Fed

I hear you.Anything emotional sets me off.So listen to what i bring here ,we can control emotion to a great extent and live a much better life even with PD..Simply said thining,thinking,thinking,before we act.

What I do is ask myself if in doubt.Is there any danger of what I plan to do.Will I regret the act?.Will the act give me peace?

Even a past act can be dealth with,forgivness as we are human and imperfect so do never be hard on ourselves

It can be developed like any habit


I will try your system my friend thank you

Hi Fed

One thing I have found with PD is especially when I wake up with anxiety.I know its from beig low on dopimine so the thoughts I have no importance.I usaly start thinking of something enjyable like what my plans are for the new day.We cant control our feelings or sensations but we can change our thoughts and control our impulses,

dr.Abraham low or Rose vansickel www.plj-unlimited.com

best johsay fed what happened with your dudopa pump ?


I first had Ddopa it was amazing ,everthing worked I  could walk and  talk at  the  same time plus  write  and make models its   now 4 yrs  later and as with any potent drug I  am becoming tolerant and  it  some times is  not quite as  effective though if anyone  suggested I give it up a large battle  would ensue as I am still   receiving huge benefits and would  spend  the day  shut down without  it so I  consider myself very lucky as there are only about 500  folks have  it, I should say  the pump is infinitely adjustable so if I begin to slow down I can adjust the daily dose or can take a single boost up to 3 times a day which gives my brain cells a smack and  off they go making my arms and legs  work  good eh.

                                                    Recommended  if  you  can persuade your PD team to  chase  one  down  hens  teeth springs  to  mind    FED