Parkinson's Disease Tulip


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Old 02-12-2017, 12:03 PM #11
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I've told the story about nine days without a bowel movement. PCP said "ER now to make sure you don't have a blockage".

Lots of water.

Lots of fruit. Apples and Blueberries are high on my list.

I eat shredded wheat & yogurt for breakfast. Note the cereal is a local store. No added sugar is the big thing.

I've had dieticians tell me I should not need the cereal with enough fruits and vegetables. Irony is as long as have it for breakfast, I'm doing fairly well.

Worst part, not poops. Food doesn't move along. Sinemet doesn't make it into the small intestine to be absorbed. No meds, no movement. From Dr Okun I learned a tip of chewing Sinemet while drink Orange Juice (natural stuff, not the super sweet sugar stuff).

Post DBS my bowels seem to be working better. Next business trip is next month, so we will see how that goes.
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Oct 2016 - DBS - bilateral GPi (PD & Dystonia). Still a work in progress. (Reduced meds to 4 - 25/100 & 50/200 ER Bedtime daily; but need six months to see how DBS/Meds play out)
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Old 02-13-2017, 02:48 AM #12
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Default Hot liquids

The combination of a half glass of kefir daily, and a morning cup of hot herbal tea with the juice of half a fresh lemon added, helped my husband to resolve his constipation. A teaspoon of fennel seeds makes an effective laxative tea, especially if you slightly crush the seeds with a mortar and pestle before making the tea. If you eat a daily salad -- raw veggies with an oil and vinegar or oil and lemon juice dressing that you make yourself -- it helps things along greatly as well.

Best of luck with that!
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Old 02-14-2017, 08:56 AM #13
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Default Tri-Magnesium

The doc I was seeing for the Hinz protocol recommended 2 tri-magnesium 300 mg capsules daily and that seems to work well.
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Old 02-16-2017, 03:51 PM #14
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The following work for me

Grapes
Magnesium
High dose bit c 500-1000mg.
I don't have a real problem, going every two days but with effort but 'bloating' is terrible, most days I look like Iv swallowed a basketball, Which has made me consider it could be fluid ie something nasty however in a more rational frame of mind it's, without spelling it out, it's certainly gas due to poor gut motility.

John, I'm the same... some days I have to force myself to drink as I rarely feel the need though I'm clearly dehydrated !

On a different note Iv been absent from the forum on DR's advice. My ocd suddenly went crazy and manifested in medical matters. My bedroom is now a consulting room, Im probably anaemic from all the tests Iv done on myself and was looking how much used ambulance would be !!
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Old 02-24-2017, 07:52 AM #15
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Default constipation

Good morning - I have a good day when I have a bowel movement, because otherwise my PD medications just don't work [levo-carb] and my day is ruined with symptoms. Notice that just about ALL PD medications cause or exacerbate constipation too. Well, I've been reading that TENS/muscle stimulation machines can be used to help this condition. I just bought the machine, but haven't tried it for that yet - has anyone else? Apparently research done by physiotherapy departments, among others, indicate that it does work. There is no point in filling up our intestines with all sorts of fruit, seeds, natural or synthetic 'roughage' or anything else, as it might just make the situation worse (impaction), since it is lack of 'electricity' in the neurons controlling peristalsis that are the problem. I think we have something like neurogenic bowel that para and quadriplegics have [but not as complete} I do know that my neurologist, neuro nurse, family doctor and all other 'health professionals' are useless and know less than we do, but neurologists love prescribing drugs that make side effects lists longer, so I'd be careful with their drugs. I'll keep you posted.
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Old 02-24-2017, 04:33 PM #16
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With all the science out there indicating a link between a disturbed intestinal microbiome and Parkinson's disease and constipation, I would think probiotic would prove useful. In fact, probiotics work well for me. I use a quarter teaspoon of a powdered probiotic daily and this is all I need.
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Old 02-25-2017, 11:24 AM #17
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Default constipation/probiotics

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Originally Posted by Blackfeather View Post
With all the science out there indicating a link between a disturbed intestinal microbiome and Parkinson's disease and constipation, I would think probiotic would prove useful. In fact, probiotics work well for me. I use a quarter teaspoon of a powdered probiotic daily and this is all I need.
Probiotics used to work very well for me, and reliably so, especially a fermented one called "BioKplus". Unfortunately, after I tapered off Citalopram (an antidepressant/antihistiamine) I developed severe food intolerances, including the probiotic. (query mast cell disorder) There are so many twists and turns in the way this disease is "treated" that we cant count on anything to work all the time. I have found the neurologists to be pretty useless.
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Old 07-08-2018, 10:17 AM #18
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As I noted in my original post in this thread, medics have most often been unsupportive of the use of enemas to relieve constipation. The latest NICE guidance shows a change:

"The case for adopting Peristeen for transanal irrigation in people with bowel dysfunction is supported by the evidence. Peristeen can reduce the severity of constipation and incontinence, improve quality of life and promote dignity and independence."

NICE is the "National Institute for Health and Care Excellence"

Peristeen is a pump driven enema system. I don't see that it would give me any advantage over the gravity fed DIY system that I described in my original post. My system is, moreover, far less expensive.

Although the NICE guidance is for Peristeen explicitly, I think that the guidance will apply to water enemas in general.

("Transanal irrigation" is being used as a synonym for "enema".)

Reference:

[1] NICE Guidance
Peristeen transanal irrigation system for managing bowel dysfunction
Medical technologies guidance [MTG36] Published date: February 2018
Peristeen transanal irrigation system for managing bowel dysfunction | Guidance and guidelines | NICE

John
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Old 07-08-2018, 11:00 PM #19
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John, for the past 10 years, I've used a "Toto Washlet", which is a kind of bidet attachment for one's toilet. The jet is strong enough to provide me with help when some poop won't come all the way out.

At the risk of sounding a bit gross, it is possible to obtain the same effect with a shower wand in the shower (on the most "intense" setting). Gross it may sound, but it works.

I mention these things in case they may be of use to you and the community.

Dan
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Old 07-20-2018, 08:59 AM #20
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Default Can we include the mental and emotional component of digestion?

Eliminate constipation, IBS, sluggish digestion, bloating with yoga, Ayurveda & Agni Sara - YouTube

Magnesium has been beneficial to me but I have had to experiment with dosage and form .. Recently have been pleasantly suprised to feel some brain fog clear with magnesium threonate-which I have taken before w/o clear (pun not intended) result (but then brain fog wasn't so much an issue at that time). Magnesium citrate (I used "Natural Vitality Calm Magnesium Powder") hasn't disturbed stomach acid but through time seems to penetrate less (while, through time, needing to take more) into my bowel which magnesium hydroxide does do (faciliates larger more well formed stools) but I am careful with because my stomach signals with a bit of pain . Also I have found it useful to combine Mg wiith herbs. Magnesium has also assissted with sleep - a bedrock for brain regeneration.

Since rigidity has been one of my main and longstanding symptoms yoga has been very helpful to counter gently .

John, thank you for sharing your story. I am struck by how patient you are . I feel that there is a gold mine to be realized (in time) from the lead of my resistance -somehow....deep down I sense there is some victimization,embarrassment or shame at the root. Has anyone tried coffee enemas?

With Kind Regards--
MD
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Last edited by moondaughter; 07-20-2018 at 11:36 AM.
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