I don't know about you, but over a decade into this disease and my major complaints are tremoring and dyskinesia. They drive me nuts, crazy, freaky and otherwise disturbed and agitated.
I don't have them all the time, but when I do, it's a general storm of misaligned electrical activity in my brain and my body. I flew home a few weeks ago to see my folks, and I was lucky that there was nobody beside me in the next seat. I was so dyskinetic that I was writhing like snakes on a plane . I kept kicking the seat in front of me and got constant head turnings with dirty looks. I wanted so badly to say "sorry, i have PD and I can't help this" but what good would it have done?
THose who could see me, probably thought that I was severely mentally retarded (I had a mentally retarded friend when I was a kid, who made all kinds of chorionic motions, similar to what I was now doing).
What do you use to settle down? I use klonopin and neurontin, but not on a regular basis. It seems when my blood levels of these "antiepileptic" type of drugs gets low, or I'm really nervous over something, I fly into "fits" of tremor and dyskinesias. Sound familiar? cs

I will attach an abstract, but this is one of a dozen reasons we should be taking fish oil. I've been one called DHA Max by Jarrow Products for a couple of months and am pleased.

1: Ann Neurol. 2006 Feb;59(2):282-8.

Docosahexaenoic acid reduces levodopa-induced dyskinesias in
1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine monkeys.

Samadi P, Gregoire L, Rouillard C, Bedard PJ, Di Paolo T, Levesque D.

Centre de recherche en Neurosciences, Centre Hospitalier Universitaire de Quebec
(CHUQ), Ste-Foy, Quebec, Canada.

OBJECTIVE: The objective of the present study was to investigate the effect of
docosahexaenoic acid (DHA), a polyunsaturated fatty acid (omega-3), on
levodopa-induced dyskinesias (LIDs) in parkinsonian
1-methyl-4-phenyl-1,2,3,6-tetrahydropyridine (MPTP)-treated monkeys. METHODS: We
explored the effect of DHA in two paradigms. First, a group of MPTP monkeys was
primed with levodopa for several months before introducing DHA. A second group
of MPTP monkeys (de novo) was exposed to DHA before levodopa therapy. RESULTS:
DHA administration reduced LIDs in both paradigms without alteration of the
anti-parkinsonian effect of levodopa indicating that DHA can reduce the severity
or delay the development of LIDs in a nonhuman primate model of Parkinson's
disease. INTERPRETATION: These results suggest that DHA can reduce the severity
or delay the development of LIDs in a nonhuman primate model of Parkinson's
disease. DHA may represent a new approach to improve the quality of life of
Parkinson's disease patients.

PMID: 16437566 [PubMed - indexed for MEDLINE]

Dear ol cs,

I also went through what you are experiencing. It became worse and worse until my vists to the neurologist were useless as my dyskenisias eventually became so bad I could only lay on the floor at my home and kick and flail my arms for hours on end. Eventually you become so oversensitized to your meds, that your body doesn't know if you are on or off. I was taken to the hospital after hurting myself from kicking a chair and was rushed to ICU. I was put into a coma induced state and put on, what in the old days, known as "a drug holiday." The constant movement was causing me to have kidney failure as they could not keep up puryifying the blood of the protein being broken down by the constant movement.

Drug Holidays are almost never down these days as it is a very dangerous procedure. It took them 3 tries to bring me out of the drug induced coma.
See a new neurologist who may be more open to trying a different drug regiman. Substitute muscle relaxants such as valium or Klonipin rather than increasing the intake of carpadopa/levodopa. Have a blood test done to ensure your kidneys are still functioning correctly and be sure to drink alot of water.

Taking fish oil is a wonderful idea, but if you have high cholesteral, and are taking lipitor or zotor, your doctor might recommend against it. Mine did. Also if you are prediabetic it isn't the best plan.

If your current neurologist is unwilling or unavailable when you are going through a crisis, it is time to find a new neurologist or see your GP who will take your problem more seriously. Neurology is still an elementary, evolving science and some of the neurologists who have been practising for years will not change their approach dispite the new research that has uncovered so much more information regarding improved treatments that cause less harm to the patient. Sorry for the runon sentences. Bad writing habit.

Vicky

CS,

I fly frequently and think it does a lot of good to tell the passengers you have PD. I almost always tell the person next to me that I have it . They are always gracious and even help with my tray, etc.

In my typical pharmaceutical fashion, I agree with Vicky about what you might need. I never fly without xanax.

paula

I've taken fish oil caps. for years, only connecting the benefits to my general health, never to helping PD. I don't think I've taken carbid./levad. long enough to be dyskinetic, and it is very nice to hope that the omega 3 oil may postpone it.
Thank goodness for fish oil capsules, I had to take cod liver oil by the spoon fulls when I was a child, and it is VILE....
Some people find that fish oil caps. 'repeat' later in the day, and now it's been discovered that English Walnuts are at least as rich in omega 3 oil as fish oil, in addition to containing lots of beneficial minerals and vitamins. The advice is to stuff some walnuts in various pockets and munch them all day. They may calm down the dyskinesia a bit, and they will certainly make you healthier - and happier?
Add raisins for an evening treat. They're good for you too.
About tremor - it's horrible. I've had tremor in nervous making situations since my early 20's - I used to think it was just nerves. The only way I know of to control tremor is to live a no-life like a Marcel Proust. I guess we're members of nature's collection of cruel jokes.
It helps not to travel alone. With a companion, you have less stress, and you have someone to lean on, literally.

All the best

birte

Dear Ol'cs,
When I used to get so dyskinesic that it was driving me crazy or I was embarrassed by it I'd have a glass of milk and it seemed to settle.
Nobody ever suggested it but it seemed to work.
I'm guessing here but think it may have been the protein that helped settle it as, like a lot of levodopa dependant parkinsonians I was very protein sensitive.
If the dyskinesia is affecting you enough then have you thought surgery might be your next step?
Regards,
Lee

I have not had tremor for about two years. Lately I started to take Motrin for back pain and stiffness. It alleviated the back pain and stiffness but apparently allowed a resurgence of the tremor. So, I would not suggest Motrin!

Ann

CS, I've had writhing dyskinesia (choreic movements) from day one with levadopa. What is more, I have diphasic chorea: I writhe when the l-dopa kicks in and I writhe when it wears off.
In between I have "peak-dose dyskinesia" which is a completely different set of ticks and involuntary movements. All of them become more virulent when I'm nervous or stressed out.

My neuro prescribed bromazepam (benzodiazepine), to take in an emergency, because he considers it less harmful than increasing my l-dopa dose. But as things are now, 13 years into PD, I would have to take it at least 3 times a day, and that I try to avoid.

Like you, I spend several hours a day writhing like an eel and it has become worse with Stalevo. Now it has become so unpredictable that I'm afraid to eat anything when I have to go somewhere. Needless to say that it makes my social life rather bland, I don't remember when I went out to dinner with friends.

Watch your diet, especially any stimulants (coffee, sugar, cool-aid, oreo cookies, etc) and the toxic "flavour enhancers" (MSG mostly) hidden in industrial packaged foods. One of the most distressing episodes I went through last summer was after having a cup of coffee and a tiny slice of berry pie at Ikea. That pie had more chemistry in it than berries. After 20 minutes I was in a fit of cramps and the wildest chorea I had ever experienced. We had to interrupt the shopping spree and my daughter drove me home in a state of despair, acting very much like that mentally retarded friend of yours you mention.

Since it all will get worse instead of better, I have decided to go ahead with DBS surgery, as I told you. Docs have confirmed that it will eliminate dysks, tremors and dystonia.

cs,
You've been so helpful to me in the past (chemo drugs, etc.) so I wanted to respond. I can only imagine that phase of PD. I have a very mild tremor which is not noticeable most of the time. The dyskinesia seems so difficult because of the lack of control one has.

I have found that whenever I can, I say that I have PD, because I think if we can, it's important to raise awareness of the disease and what it can look like. Right now mine is a very mild form, but it won't always be. Since I find the disease such a "taker" (it seems to always take so much from us), I want to do something to counter the taking. I have been amazed at times when told you can't do something (such as board a plane early), and you say you have PD, then it's "go right ahead".

I realize it's not always possible to say or explain.....but whenever we can, it's a form of educating the public and raising awareness of the "face of the disease".

Again, thanks for all your posts, which have been such a help to me!
mari-mari

I dont have a whole lot to contribute to this thread, but I usually tell people I have pd, and they usually are accomodating and understanding

I had what I think was the beginning of dyskinisia..not sure..but whatever it was disappeared when I started taking the DM..But since Im not at all sure it was dyskenisia, it is neither here nor there

Ive never been on a plane cs..And I think it would make me dyskinetic even if I never was..