Parkinson's Disease Tulip


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Old 08-20-2009, 06:04 PM #1
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Default White Rat Report

Over the last four weeks I seem to have improved considerably. Some particular changes:
1) I was routinely being forced to call it quits by mid-day. I would make it home with a bladder clamoring for attention. Most of the time I would start freezing as I got out of the car. Sometimes the bladder made it and sometimes it didn't. The rest of the afternoon was spent trying to get back on.
2) Another routine was an hour or two of freezing prior to bedtime at 11:00 or so. Again, the bladder was a factor and sometimes I'd make it and others not.

Both 1 and 2 were the case 3 to 5 times per week. Now they are virtually gone. My meds have not increased and may even have decreased.

There is one negative. I have more dyskinesia. It is manageable but I am adjusting things to get it under control.

As to what to attribute it to, I only know of two possibilities. One is the potassium I wrote about. But that seems unlikely due to the limited time and amounts used.

The other is the elimination of wheat gluten. The timing is right and I have done well in not messing up. Make of it what you will.
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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 08-20-2009, 07:23 PM #2
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Interesting. I was just reading an article on the neurobiology of schizophrenia and they outlined a case in which giving up gluten seemed to halt the symptoms in someone with a 50 year history of hallucinations and suicidality...maybe the brain is really sensitive to the stuff.
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Old 08-20-2009, 07:35 PM #3
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Purportedly one is particularly vulnerable if blood type O, as many PWP are.

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Interesting. I was just reading an article on the neurobiology of schizophrenia and they outlined a case in which giving up gluten seemed to halt the symptoms in someone with a 50 year history of hallucinations and suicidality...maybe the brain is really sensitive to the stuff.
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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 08-21-2009, 03:50 AM #4
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Default Give me an "O"

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Purportedly one is particularly vulnerable if blood type O, as many PWP are.
My goodness, blood type O? We share that in common...what is the research on that connection?

Laura
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Old 08-21-2009, 04:15 AM #5
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If you search this forum you should find a thread discussing our blood types. O was by far the most common, a bit more than in the general population where it also predominates.

From there you need to google "Blood type diet" which will bring up a book or three written by an MD whose name escapes me. NYT best seller if I remember right and very level headed. The idea is that over the millenia, the human race began in Africa and migrated in various directions. One group went in one direction, domesticated cattle and adapted to drink milk. Another went another direction, developed agriculture and adapted to grains. The mix of your genes from this pool determines your relationship to the foods available. Type O has a lot of the original genome and not so much of the new, so we thrive on meat, leaves, and roots - aka the Paleolithic Diet.
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My goodness, blood type O? We share that in common...what is the research on that connection?

Laura
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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 08-21-2009, 01:33 PM #6
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Default Just when you thought it safe....

I screwed up at lunch and ate a sauce thickened with flour. Not much, either. Just three shrimp wet with it. Boy, talk about confirmation! It has been three hours and a friend just drove me home. Barely able to walk. Typing hunt and peck. More later.
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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 08-21-2009, 03:51 PM #7
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Default +5 hours

I am about 75% recovered and am quite happy to report that something, and I think it to be wheat in the form of flour used to thicken but I wouldn't rule out MSG (I have a slight headache). I know the management of the restaurant and they have always shot straight with me, so I believe that they think there is no MSG present, In either case, I am happy to report that my worst symptoms came back for a while.

That means that the most scary stuff out of my collection is, indeed, diet related. The "old friends" who returned and thereby drew attention to their absence included:
1) Loss of use of lower limb control. I could not walk for about two hours and barely did for another two.
2) Freezing returned.
3) Urge incontinence, too.
4) Brain fog.
Those are the big ones and all have been mostly gone for the last four weeks.
Now, that's pretty cool!
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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 08-21-2009, 04:42 PM #8
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Quote:
Originally Posted by reverett123 View Post
I am about 75% recovered and am quite happy to report that something, and I think it to be wheat in the form of flour used to thicken but I wouldn't rule out MSG (I have a slight headache). I know the management of the restaurant and they have always shot straight with me, so I believe that they think there is no MSG present, In either case, I am happy to report that my worst symptoms came back for a while.

That means that the most scary stuff out of my collection is, indeed, diet related. The "old friends" who returned and thereby drew attention to their absence included:
1) Loss of use of lower limb control. I could not walk for about two hours and barely did for another two.
2) Freezing returned.
3) Urge incontinence, too.
4) Brain fog.
Those are the big ones and all have been mostly gone for the last four weeks.
Now, that's pretty cool!
Reverett,

I´m glad you recovering. Here in my country, we have a company that sells a lot of products, gluten-free, sugar-free, egg-free, milk-free and corn-free at the same time.

For an example. A bread, gluten-free, sugar-free, milk-free, egg-free and a minimum dose of sugar and salt.

Could this be used securely for PDrs or the best bet is to avoid everything that contains wheat?
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Old 08-21-2009, 05:14 PM #9
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If it is gluten fre then it should be wheat free as well, shouldn't it?
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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 08-21-2009, 06:59 PM #10
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It has been eight hours and I am mostly back to normal. I have, at least in my eyes, confirmed a very important point. My worst symptoms are not caused by PD, at least not the way we would usually think of it. I am going by the restaurant where I had lunch Monday to find out for certain, but either MSG or wheat was almost certainly in that food. It hit my nervous system like a brick.
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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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