Parkinson's Disease Tulip


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Old 07-01-2009, 09:51 PM #1
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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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Old 07-01-2009, 10:52 PM #2
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Default Gluten - good topic!

Hi Rick

I read about this some time back, and even had a lady friend who suffered from this indicated by ataxia and parkinson-like symptoms. Barbara was never given a definitive diagnosis (are any of us?) She was in a study at NIH (Bethesda, MD)) where they were thinking she had sensitivity to gluten. That stuff is in everything!

Barbara began to lose her voice and fall more frequently and passed away suddenly. They surmised that she had choked (how horrible!). I have developed a fissure after my second cervical fusion (neck) and know how frightening choking can be.

Anyway, I'm glad you brought this up. Wouldn't it be something to find out that you could control symptoms with diet alone? I do wish they would get busy and improve imaging studies or something to "prove" we have PD. Our diagnoses are so ambiguous!

Peggy
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Old 07-01-2009, 11:43 PM #3
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Book 4th SPECT scan

Peg,

I go to Yale at the end of this month for my 4th SPECT scan (2003-2005-2007-2009) I hope one day this scan technique will be approved as a diagnostic tool for PD. They are also using this study to look for biomarkers for PD. (single photon emission computed tomography with BETA-CIT)

Here is an old medscape article about it.

Dec. 4, 2002 (Chicago) - A radiopharmaceutical-imaging agent - ioflupane (I123-FP-CIT) - used with single photon emission computed tomography (SPECT) is "98% accurate" for early diagnosis of Parkinson's disease, says David J. Tuite, MD, of Adelaide and Meath Hospital in Dublin, Ireland. Dr. Tuite presented findings here from a series of 50 patients who underwent SPECT screening using the radiopharmaceutical-imaging agent at the 88th Scientific Assembly and Annual Meeting of the Radiological Society of North America. medscape.com
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Old 07-02-2009, 04:19 AM #4
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Default I can relate to this

It is really hard to type this morning with my shaking, stiffness, and aching, but I have noticed a difference in how I'm feeling with my symptoms depending upon what I'm eating. I think consuming wheat and gluten is a problem for me as well. Lately I have been eating too much of the wrong kind of food since I just returned from a cruise. I'm going to really stick to gluten free and see what happens. thanks!
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Old 07-02-2009, 07:40 AM #5
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Default Worth some serious thought

Wheat gluten is capable of triggering the destruction of your tissues in your GI tract as in celiac disease. This is not hypothetical.

This is another "poorly understood" area.

With the issues surrounding the permeability of the Gut barrier and the BBB, it is no stretch to imagine protein molecules from gluten finding their way into the brain. Since permeability fluctuates, this could be a gradual process. Maybe stretching over decades. Would medical science know if it was happening? An intermittent process, slow moving, not detectable by testing, controversial? SUURE they would!

This is an ideal White Rat area. Try a day or two with a paleolithic diet - meat and leafy greens. Keep notes.
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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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Old 07-02-2009, 07:45 AM #6
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And what if the issue here is not niacin at all, but rather the reduced wheat consumption in a maize-rice diet?


1: Asia Pac J Clin Nutr. 2003;12(4):447-50.

Retrospective study of preventive effect of maize on mortality from Parkinson's
disease in Japan.

Fukushima T, Tanaka K, Ushijima K, Moriyama M.

Department of Hygiene & Preventive Medicine, School of Medicine, Fukushima
Medical University, Fukushima, Japan. t-fuku@fmu.ac.jp

The findings of a negative association between past maize (Zea mays) production
and current Parkinson's disease mortality by each prefecture in Japan tends to
support the hypothesis that the nutritional condition that causes niacin
deficiency might protect people from Parkinson's disease. Specifically, the
negative association between both the area planted for dried corn in 1960, 1970
or 1977 and the area planted for sweet corn in 1960 and age-adjusted death rates
for Parkinson's disease is ecological evidence supporting the hypothesis.
Extending the analysis to other cultivated crops, even stronger negative
associations of age-adjusted death rates for Parkinson's disease and cultivation
of rice and soybeans were found, but associations were not significant for a
large variety of vegetables. The findings for soybean and rice are attributed to
the correspondence (co-linearity) of cultivation of these other two seed-crops
with maize. Hence, further testing of the theory of niacin deprivation and
prevention of Parkinson's disease finds some circumstantial support in the
cultivation patterns of a grain of poor niacin and tryptophan availability.


PMID: 14672869 [PubMed - indexed for MEDLINE]
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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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Old 07-02-2009, 08:18 AM #7
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Default healthy foods

CTenaLouise has shared with us her regime, and it's a great one....I will add our experience with food.

We do MUCH better on a modified macrobiotic diet (got into this because friends of friends have been cured of cancer on this diet, so we figured it was good enough for us!).

The real macrobiotic diet is pretty rigid, and unworkable if you have little kids like we do, so we change it up a bit. But the premise is generally the following:

no processed foods
LOTS of vegetables, leafy greens at every meal is ideal
alternative grains, tons of rice, quinoa (this is very good), couscous
little to no wheat (and if you cut processed foods, you cut a ton of wheat)
very little dairy (this is hard, we love cheese and ice cream)
fish or chicken, very little red meat

This means a lot more time in the kitchen, but it's good for our kids to see how food needs to be prepared, and it's much healthier. We will take quinoa, cook it, and then mix in tomatoes, black beans, cilantro (lots of this, we love it), some olive oil and lemon juice and it's delicious. There are tons of recipes online for eating this way and I usually make a big batch and then we can take little containers out of the house as needed.

Shopping is easier, too, you just avoid the middle of the grocery store where all the cookies, chips, cereals, canned soups, frozen foods, etc. are. Organic is best whenever possible, and growing your own even better...even a patio can hold one or two big pots with chard, kale, lettuces, in them...I have posted about gardening before and it's so worth it.

Another bonus of this "fresh and clean" way of eating:

less trash!
support local farming!
you will actually be hungry when it's time to eat!
you honor your grandmother who loved to cook like this!

I just read an article that said American adults are getting fatter (how is this even possible? Has anyone been to a mall lately and looked at our people-how much bigger can we get?) It is very hard to be obese when you are eating fresh and clean.

Everyone who modifies their diet should share what they experience here so we can all learn. I personally love the recipes on epicurious.com, but there are tons of sites with great recipes.
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Old 07-02-2009, 08:42 AM #8
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Default

Some interesting snippets from http://www.answers.com/topic/the-nat...story-of-wheat

Keep in mind that PD was first unequivocally described in London 1817.

All plants are identified by their chromosomes. Every variety of wheat grown today has arisen from wild, fourteen-chromosome wheat, undoubtedly einkorn. Einkorn and fourteen-chromosome wild grass crosses created twenty-eight-chromosome (tetraploid) wheats. Only one twenty-eight-chromosome species can be found in nature: wild emmer (T. dicoccoides).

Modern bread wheat varieties have forty-two chromosomes and evolved from crosses between emmer and goat grass, which is the source of the unique glutenin genes that give bread dough the ability to form gluten.

Three major advances were vital in the expansion and development of wheat production and consumption. First, in the early 1800s,.....

For thousands of years, all wheat, regardless of variety, was grown, harvested, and co-mingled in storage. As milling and the wheat food industry became increasingly sophisticated, companies became aware of the uniqueness and importance of wheat varieties.....

Tenant farmers were compelled to mill their grain at their landlord's mill, and a "soke" of one-sixteenth of the production was kept by the landlord. Until the soke system died out in 1791, wheat was not sold much beyond the landlord's domain....

---------------
From all this it seems that there is a wide range of wheat varieties with major differences at the molecular level. That the grains implicated in celiac disease share goat grass ancestry and are recent arrivals. That things changed with the Industrial Revolution and wheat went from a regionalized mix of different varieties to a more specialized single variety type of use. A generation later, James Parkinson wrote his pamphlet.
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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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