[Ronhutton]

I get bad dyskinesia most mealtimes. I raised this some time ago, but it seemed few others experienced it. I now find a book has been published,

http://www.hamhigh.co.uk/content/cam...A14%3A18%3A460

in which the doctor authors describe,

" In 2004 the Leaders won an award from the Parkinson's Resource Organisation in the US for their contribution to quality of life for people with the disease.

They were first inspired to begin their research 10 years ago by the suffering of a friend.

Ms Leader said: "I had a friend who had Parkinson's disease and was wasting away. I discovered he was trying not to eat as he realised his symptoms became worse after eating.

"I followed the chemical analysis of food and the working of the body in order to absorb the food and medication. It was such an amazing success, instead of writhing around horribly after food the symptoms were much reduced."

I intend to buy the book, but has anyone else experienced this?

Ron

[reverett123]

Ron-

I have the Leaders' book and reccomend it. Each of us has a different metabolism and manifest PD differently as a result. The only way to manage it is to figure out our own picture by experiment and recording the results. (I know I'm preaching to the choir here and am really talking to those yet to be convinced )

I myself, despite every bit of medical advise, find I do best with lots of protein all morning long. Others are rendered catatonic by such a diet.

On the matter of dyskinesias, you might be interested in this recent report using fish oil:

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]

[Englishmalc]

Hello there, a definate yes to this link with eating. I am now in my 8th year of parkinsons, diagnosed when I was 29. I do not eat during the day at all so my day is;

06:00 1xhalf sinemet cr, 2x62.5 madopar and 2mg of trihexyphynol hydrochloride;
10:00 1xhalf sinemet cr, 1x62.5 madopar,
12:00 1x62.5 madopar and 2mg of trihexyphynol hydrochloride,
14:00 1xhalf sinemet cr, 1x62.5 madopar,
18:00 1xhalf sinemet cr, 1x62.5 madopar and 2mg of trihexyphynol hydrochloride, 19:00 after this time I can eat anything but tighten up a little
21:00 I take a 2mg zopiclone tablet along with 2mg of trihexyphynol hydrochloride plus a medicinal glass of whisky :-)
21:00 – 02:00 if I wake in the night I go and have a protein full snack, I am rather partial to cheese and crackers

The only quirk is that the madopar and the trihexyphynol hydrochloride must be disolved in not too much water (100mls). For the best effect trihexyphynol hydrochloride appears to act optimally if left to soak for 30-60 mins but it is a tablet that does take some getting used to.

For me the crucial feature is not to take any levadopa for the 12 hour period between 18:00 and 06:00 to allow the body to rest and start from scratch each day. Routine is everything...

My general condition, if I stick strictly to this routine, allows me to lead a relatively normal life with virtually no off periods despite the Parkinsons generally I lead a normal life while this routine is adhered to.

Of course everyone is different...

[rosebud]

I believe Dyskinesia is an oversensitvity to something (not sure what) that causes a sudden imbalance in our brain chemistry and I don't think anyone has a real handle on it. From my experience, when I stay away from the sugars and other hi GI foods, I can almost eliminate it completely from my symptoms. Invariably I get cocky about the whole thing and begin to wonder how far I can push the envelope and still get away with it. Having just come through the treacherous Straits of Christmas, I am up to my eyeballs in dyskinesia. Time to get seriously back to some self dicipline which is another way of saying I have to go get myself/meds/eating habits yada yada yada back on track.

Ron: i had your problem for awhile, but found I could off set it by munching on a few carrots or some other benign filler for my stomach before I sat down to eat with the family. (sort of like distracting a child) I think its tied to blood sugar levels and insulin levels when it comes to pre eating bouts of dysk. Try having a small snack 15-20 minutes before you sit down to dine.
If I want to stay in balance I have to do alot of ahead planning, keep track of my med times and eat small amounts. It's all a big pain in the butt and then I get rebellious, frustrated, impatient and the list of negatives goes on and on. Before I know i'm at the bottom of the cycle and guess what? I have to go through the same thing again. I must be an old dog because I am definitly learning new tricks at a tediously slow rate. I know intellectually what I need to do but my heart is not yet committed. A few years ago I drafted a set of rules which I keep posted on my fridge
1. There is a set of rules in the universe by which we must all live.
2. These rules are absolute and irrevocable.
3. You must figure out what these rules are for yourself.
4. Sometimes these rules don't apply.

good luck!

[rosebud]

The Leaders books...there are actually at least two. Which one do you have Rick? I'll comment more on that later, gotta go eat!

[lindylanka]

Hi Ron,
I do not get dykinesias, but have wearing off dystonias a lot. These are often triggered early by eating, so I too often do not eat till later in the day. I have found that not eating gives me a trouble free day, but is far from practical, and can lead to some weird situations - like have you ever done food shopping when you are really really hungry - your trolley will look completely different when you get to the checkout! Sleep also interferes in some way which leads me to the conclusion that there is a metabolic element to PD that the neuros are not even looking at. If I really want a good day with no fluctuations I take the drastic step of not going to bed at al AND not eating, and feel for most of the day like my old self. The next day, however, I collapse ........

Lindy

[Ronhutton]

Hi All,
Thanks for your replies. At least I am not alone on this one, I had begun to think it was only me!!
Rick, I already have a daily dose of fish oil, rich in DHA, and the other recommended unsaturated carboxylic acids. I take 2 soupspoons every morning, Ugh!!
It could be related to blood sugar as Rosebud suggests, but I find as soon as I start chewing, I start writhing around. There doesn't seem to be enough time for the food to even get to my stomach. Once chewing has started it off, it lasts right through the meal, and beyond. Maybe it is a sign to cut down on my Sinemet, but I am already down to 250 to 300mg of Levodopa after nearly 16 years of PD.
Ron

[reverett123]

so something shifts at that moment, perhaps in anticipation of the meal. our endocrine systems are a big part of all this and a real puzzle palace in its own right. insulin might be a good first guess.

[boann]

and still dyskinesias? i don't know much about what one can expect if one reduces one's ldopa intake after one has developed dyskinesias, but i was under the impression that a dose reduction generally speaking would tend to reduce them, at least. you have probably heard of priming... i wonder if it could have something to do with that...

[Englishmalc]

I have a theory on this, It seems that a rapid reactivation of any residual levadopa causes dyskenesia/dystonia. This rapid reactivation can be promoted by starting to eat or just in anticipation of food. Glycogen will readily bind with levodopa so we are looking for a release mechanism to break the bond between glycogen and levodopa. The theoretical solution suggests that it is related to the pancreas as digestive enzymes and other hormones (including insulin) are produced when you eat anything (this would explain the lack of consistancy about what food groups can cause this effect). The link is that most cells of the body have insulin receptors which bind the insulin to the cell and activates other receptors on the cell which are designed to absorb glucose (sugar) from the blood stream into the inside of the cell. This reduction in glucose in the blood frees the levadopa and the resultant rush causes the dyskenesia/dystonia. Theoretically the way to control it is to take a glycogen supplement to re-bind the levadopa or reduce the amount of insulin…

Of course it could be none of the above, any comments…. Im new at this.