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 ?
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.
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
Caroline 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
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
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