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Old 07-01-2009, 09:51 PM
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reverett123 reverett123 is offline
In Remembrance
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
reverett123 reverett123 is offline
In Remembrance
reverett123's Avatar
 
Join Date: Aug 2006
Posts: 3,772
15 yr Member
Default Sudden Progression

I am intentionally separating this from the thread of a similar title below so that it will stand out. If you should encounter an unexpected symptom flareup or worsening, give some serious thought to the possibility that you have developed a sensitivity to wheat gluten.

I know that this has been touched on before, but I have some firsthand experience now. If it should happen to you, knowing what to look for might keep you out of a nursing home.

As noted earlier, hypersensitivity is totally different than allergy. Allergy is primarily a product of the immune system. Hypersensitivity, on the other hand, is neurological. Those are, admittedly, broad statements, but the reaction that I am talking about produces a neurological response that amplifies PD symptoms as well as adds a few of its own.

Two days ago, I had lunch at a Japanese place that makes a point of not using MSG at all. I had fried rice, thinking that I would avoid gluten. Unfortunately, as I have since learned, restaurants often depend on "flavor packets" for fried rice which includes wheat starch.

I enjoyed lunch and took a sizeable portion home. About an hour and a half later, I went unexpectedly "off" and desite shoveling Sinemet and Requip at it, stayed that way.

I first started pondering when I noticed that while I was "off", I wasn't stiff. But I couldn't move, either. For about 30 minutes I experienced what I imagine curare (of poison arrow fame) must feel like. Total lack of control over the voluntary muscles.

Luckily, that lessened but I still had problems. Couldn't walk at all. Couldn't lift my arms to type. That was new. And still not rigid.

I finally improved enough to make it to bed, barely. In the night I wakened several time to use a bedside urinal kept handy for such situations. There was an accumulation by morning of about three times normal and it was unusually dark. Also, when I got up, I was in much better condition except for intense lower back pain for the first few steps but then none.

One thing that carried over into the day was unusual bloating. It took most of the morning to get "on". I finally did, just in time for lunch. As in leftover fried rice.

It wasn't quite as bad as yesterday but I didn't eat as much either. But I did spend another six to eight hours in a totally miserable state. Eventually I figured it out.

But if I had not been already aware of the issue, I might not have. I didn't use to have problems with such things. Why would I expect to now? Why would I stop bread, for example? Falling all over the furniture, a sandwich might be the food of choice. If so, things would get worse and worse. I might end up in hospital. With their crummy sandwiches and MSG. If no improvement, then maybe to a nursing home with the same menu. Who would suspect? After all, he's got PD.

Bottom line: 1) Just because wheat doesn't seem to bother you today doesn'tmean it won't tomorrow. 2) Unexplained worsening of symptoms have an explanation. This may be it for you. 3) If the symptoms are not only worse, but also include some that are oddly new or unfamiliar, be suspicious. 4) Make your family aware of the possibilities.

Progression may be normal, but it is slow. Sudden changes are suspect.
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Born in 1953, 1st symptoms and misdiagnosed as essential tremor in 1992. Dx with PD in 2000.
Currently (2011) taking 200/50 Sinemet CR 8 times a day + 10/100 Sinemet 3 times a day. Functional 90% of waking day but fragile. Failure at exercise but still trying. Constantly experimenting. Beta blocker and ACE inhibitor at present. Currently (01/2013) taking ldopa/carbadopa 200/50 CR six times a day + 10/100 form 3 times daily. Functional 90% of day. Update 04/2013: L/C 200/50 8x; Beta Blocker; ACE Inhib; Ginger; Turmeric; Creatine; Magnesium; Potassium. Doing well.
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