Parkinson's Disease Tulip


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Old 02-16-2017, 03:51 PM #1
Niggs Niggs is offline
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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 #2
SarahBain SarahBain is offline
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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 #3
Blackfeather Blackfeather is offline
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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 #4
SarahBain SarahBain is offline
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Default constipation/probiotics

Quote:
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 #5
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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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Born 1955. Diagnosed PD 2005.
Meds 2010-Nov 2016: Stalevo(75 mg) x 4, ropinirole xl 16 mg, rasagiline 1 mg
Current meds: Stalevo(75 mg) x 5, ropinirole xl 8 mg, rasagiline 1 mg
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