Parkinson's Disease Tulip


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Old 07-16-2009, 08:24 AM #1
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Default Potassium - I'm amazed

First, to bring you up to date, from my post on PLM-

"To recap- Since July 1 I had been getting worse and worse. Finally, this past Sunday (7/12) it got to the point that I could hardly walk and the meds barely budged things. Monday (7/13) started the same way, but the introduction of a potassium supplement turned me completely around in less than ten minutes. Over the course of the day Mon. I took 100 mg every two hours (total about 1000 mg). Tuesday (7/14) was much better with just two to three short "offs". That brings us to Wednesday (7/15)-

Slept unusually well. Up to bathroom only once compared to half a dozen previously. Woke up at 5:00 AM and got up. Moving well for time of day. Not doing pirouettes (sp?) or anything, but much, much better. Big surprise! No curly toes! They have been companions for those first ten minutes of "upness" for a couple of year now, but they were nowhere to be seen today.

Meds have worked well today, too. Haven't needed extras and have been running errands etc most of the day. One short "off" around lunch.

GI tract has started working again after a two week holiday.

I feel "STRONG" today, unlike the fatigue of the last two weeks.

Today I took about 600 mg of potassium."

Now, this morning (Thur 7/16) once again no curly toes, a relatively quick "on", and off to a good start.

There is no research on Medline about potassium levels in the PWP population. None - nada - zip!

Does chronic low potassium levels stress dopaminergic cells to death? Does it impair dopamine production? Do PWP absorb potassium poorly? Do most PWP have low levels?

They have never even asked the questions..... This is insane
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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 07-16-2009, 08:28 AM #2
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Default Thank you Rick

I am really glad to hear you are feeling better, Rick. I'll see what I can dig up on potassium....right after I make my banana blueberry K-PAX smoothie!
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Old 07-16-2009, 08:43 AM #3
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http://www.ninds.nih.gov/news_and_ev...m_20060226.htm
Quote:
Previous studies have found abnormalities in the number of potassium channels in Parkinson's, Alzheimer's, and Huntington's diseases. Together with the new study, these findings suggest that potassium channel abnormalities may contribute to a wide variety of neurodegenerative diseases.
another one:
http://www.sciencedaily.com/releases...0314071813.htm
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Old 07-16-2009, 08:57 AM #4
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Lightbulb

Some foods are very high in potassium.
V8 12oz has 680mg
V8 low sodium has 800mg (this is approx what an RX supplement has in it).
1/2 cantaloupe has 1200-1500 depending on its size.

OTC supplements have a maximum of 99mg/tablet and I think are not cost effective for potassium supplementation.

A serving of Gatorade is low... 30mg

The new nutritional RDA for potassium is 4500mg/day.
This has been raised from 3.5 gram previously.

This website can help you choose high potassium foods:
http://www.nutritiondata.com/

Many people do not get the RDA in potassium. If you look to your diet, you can fix most low potassium levels safely with wise food choices.
Taking supplements when you do not know your serum level, or kidney functions can be dangerous. Some kidney disorders leach potassium and some conserve it.

Some drugs leach potassium: many diuretics, steroids, diarrhea,
some antibiotics.
Some drugs conserve potassium: spironolactone, triamterene, amiloride, ACE inhibitors for blood pressure.

So please do be careful.
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Old 07-16-2009, 01:59 PM #5
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Default Some thoughts

It is 2:30 PM on Thur, 7/16, and I have had a very good morning. No curly toes. No "offs". Less medication and longer intervals. So far I have had just 198 mg of potassium as I reduce it in keeping with the assumption that a deficit is being corrected. One thing that I particularly want to know is will I experience "freezing" this evening.

Nine years ago I presented with symptoms much like I have now. The difference is in intensity or frequency, but it boils down to difficulty walking. There was no check of electrolytes at the time nor has there been one by my neuro since. My GP did pick up on the same problem last year and prescribed a short run supplementation but there has been no follow up yet.

Had I been tested for potassium levels upon original presentation and before medications altered the equation, would I have been able to simply correct the imbalance? Or any of us, for that matter. Does our system need the same level of electrolytes to thrive as others? Are there enzymes or co-factors that we lack? These questions and dozens of others have not been asked. What research that has been done is on the channels in and out through the cell membrane and they have been shown to be important. Are serum levels less so? We don't know.

Am I an anomoly or is this a widespread but unrecognized problem? Curly toes is pretty common for PWP. Is it a biomarker for this? I ran across one of my earlier posts about the idea that there was a major shift almost immediately upon taking the tablets. Less than ten minutes. A friend (non-PWP) told me of a similar experience he had with extreme leg cramps that melted away in minutes when he took potassium years ago. If it is a "digital" problem (either on or off) instead of analog (gradual) does that affect its identification?

A couple of years back, a member named Steffi proclaimed the great beefit she experienced from a tonic whose name I forgot. But I remember that it was essentially electrolytes.

So, how widespread it the effect? Can we use it? And do constant sub-optimum levels stress a cell enough to power degeneration?
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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 07-16-2009, 04:01 PM #6
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Default coffee and tea

Thanks Rick for sharing, so helpful. I remember reading that a nurse once said most health problems could be prevented if people just supplemented with three things:

potassium
magnesium
calcium

I wonder, since coffee and tea are a type of diuretic, do they also leach potassium from the body? And off topic, my mom was having heart palpitations and her doc immediately put her on a diuretic, with no mention of needing to supplement with potassium. My research indicated that very often, a potassium deficiency causes the heart palpitations in the first place, and the diuretic only makes things worse because it leaches even more potassium out of the body. I had my mom throw out the pills the doc prescribed, and got her on a potassium supplement...guess what? Palpitations gone. Her doc remains clueless.

What type of potassium are you taking (citrate, aspartate, etc.) and what is the brand? How many mg at a time, and do you feel any effects other than good ones?

I am very happy you are feeling better, and hope it continues to improve for you.

Last edited by lurkingforacure; 07-16-2009 at 04:03 PM. Reason: clarification
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Old 07-16-2009, 04:21 PM #7
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Default adult requirements: 4700mg/day

Rick, the Linus Pauling website states that adults need 4,700mg of potassium a day...so your taking of the 1000mg that first day would seem OK...

Here is what may be at play as well: potassium concentration is much higher inside the cell than outside (I think it said 30 times higher), and sodium concentration is much higher outside the cell than inside (ten times). With our salty, sodium-rich Western diet, perhaps the problem is not so much an outright potassium deficiency, but an imbalance between the sodium-potassium relationship in and out of the cell. It has not been until this century that people began consuming the massive quantities of salt that we do (other than cured meats, but those were eaten sparingly, if you got them at all). So while we used to eat lots of foods rich in potassium and low in salt, now the opposite is true. And once one electrolyte gets off balance, it seems reasonable to assume other things get out of whack as well, like a dominoe effect.

It would be interesting to see how salt affects your new-found improvement with the potassium, eh?
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Old 07-16-2009, 08:25 PM #8
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First, Fiona is having some computer problems and has asked that I post this-
from http://cc.bingj.com/cache.aspx?q=pot...440a1,e0e74759

"Nutrient Depletion by Levadopa and Dopamine Agonists

Increased urinary potassium losses occur in some people treated with levodopa. The mechanism isn’t clear, but potassium losses are not significant when a peripheral decarboxylase inhibitor, such as carbidopa, is used with levodopa. However, when Requip or Miraplex is used for symptoms of RLS potassium, losses may become significant. Symptoms of potassium loss include stiff, sore joints (hypoflexia), constipation, inability to think clearly, and cardiac arrhythmias. "

Second, I have been using a Source Naturals product called "K-MAG KG" which lists its active ingredients per two tablets are 200 mg Magnesium; 198 mg Potassium; and 2 gr of alpha-ketoglutaric acid. The latter is new to me and seems to be an amino acid that "combines with the harmful ammonia generated by intense muscle activity".

It is now 9:30 PM and with the exception of about an hour around 5:00 I have been on all day. Took four tablets of potassium (400 mg+/-} through the day.
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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 07-16-2009, 09:25 PM #9
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Rick;
here is what one of the MDS's in my group said:;
" Potassium is essential in all cells and the channels that control the concentrations can be mutated in some genetic disorders. These usually result in weakness. There is no evidence that potassium is anyway involved in PD"
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Old 07-16-2009, 10:03 PM #10
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Quote:
Originally Posted by chasmo View Post
Rick;
here is what one of the MDS's in my group said:;
" Potassium is essential in all cells and the channels that control the concentrations can be mutated in some genetic disorders. These usually result in weakness. There is no evidence that potassium is anyway involved in PD"
chasmo-
It would probably be more accurate for him to say that he has seen no evidence. There are no papers on the topic in MEDLINE. Literally zero on the incidence of potassium deficiency in the PWP. I would wager that he, like me, assumes that such obvious work has been done long ago and that he would have heard of it had it been important. That was my expectation and that's why it so startled me.

However, to say that "there is no evidence that potassium is anyway involved in PD" is not the same as saying "the evidence shows that potassium is not involved etc...." I agree with his statement. There is, indeed, no evidence. The whole darned medical community seems to be flying blind and assuming that someone else put the cat out.
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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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