New arrival but old and new issues dbs, ... - Cure Parkinson's

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New arrival but old and new issues dbs, cbd oil, constipation, Kemadrin

billyboy11 profile image
14 Replies

I am new to this.

Constipation is a big issue as the dosage of Movicol combined with Senekot does not work consistently and PD medication on time reduces from 3 hours down. I am considering a home enema kit as I seem to be permanently constipated.

Anyone tried an enema kit?

DBS application now in process though I am not yet fully convinced.

Medical Marjuana (cbd oil with THC) not legal where I reside but had an opportunity to try it in Spain. I simply wanted to get a full night's sleep and it worked. CBD oil without THC was ineffective.

Does anyone know how CBD with THC works in places where it is legal? (some states in USA and Barcelona region of Spain).

Kemadrin was a key componnent in my medication arsenal affecting Tremor and I need to remove it due to unwanted adverse effects on memory. I am now down to 2.5mg per day and having problems removing it fully.

Anyone still using Kemadrin?

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billyboy11
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14 Replies

billyboy11,

Welcome to the forum! There is a ton of useful information available on this forum and you should be able to get some good ideas for PD related issues. There are also many knowledgeable people with lots of experience who will be able to answer many of your questions.

As far as the constipation issue, some forum members have found that high dose vitamin B-1 / thiamine effectively resolves the issue along with many other symptoms of PD.

Here is a post that discusses its use in PD:

healthunlocked.com/parkinso...

I have a question for you regarding your problem. Did you have constipation before you were diagnosed with PD or did it come after you were diagnosed. I ask because I am interested if constipation is one of the earliest symptoms or if it is a later symptom.

Art

johntPM profile image
johntPM

Constipation is my worst PD symptom. Keeping well hydrated is recommended, but I have lost my desire to drink (funny enough, my desire to eat is normal). Movicol is fairly effective, but I hate the taste. When I researched into enemas I found that almost all medical opinion was against their chronic use. However, my problem was so big that I went ahead using water enemas regardless. I have been using them for over 3 years, perhaps on average about 3 times per week.

I made my own enema kit as follows: take a cleaned 2 pint plastic milk bottle; take a cleaned 2.4m x 3.2mm length of plastic tubing (available in, e.g. Halfords, for about £2); drill a hole in the bottle top a bit smaller than the tubing. Press the tube through the bottle top, leaving enough to just reach the bottom of the bottle. Fill the bottle with water from the cold tap. Screw the top on. Suspend the bottle from, for instance, a shower rail. Pressing the bottle starts the syphon effect. When the water is running through relax the pressure. Use, don't worry if you don't use the whole 2 pints. Clean.

My regimen, which I try to keep to is: note when I poo, my preference is after breakfast; in the evening of the next day, dissolve and drink 1 sachet of Movicol in 300ml of tonic water (it improves the taste); the next morning take your meds, eat your breakfast, wait about a hour; then give yourself the enema.

John

park_bear profile image
park_bear in reply to johntPM

Docusate sodium (a.k.a Colace) is a good stool softener and high dose thiamine is good for restoring normal peristalsis.

billyboy11 profile image
billyboy11 in reply to johntPM

Thanks for such an amazing response... miuch appreciated.

Bill

alexask profile image
alexask

Mannitol is an osmotic diuretic so will help with constipation - make sure you are well hydrated before taking. I take a teaspoonful with coffee each morning - you may need a bit more. This has worked for me for 18 months. Mannitol has also had other significant benefits for a decent minority of Parkinson's patients. Search on the internet - Amazon (ugh) sell it in the States I believe.

billyboy11 profile image
billyboy11 in reply to alexask

Thanks... Mannitol has loomed large in responses and looking forward to trying it and vitamin B!, Thiamin. Particularly great to know that the sense of smell returned to those who took part in the research.

alexask profile image
alexask in reply to billyboy11

Yes, my sense of smell was much diminished beforehand - couldn't really smell my duck's cage much (which if you think about it is astonishing as ducks do stink) . Also filter coffee smelt faintly of coffee. Now my sense of smell is fully restored and I can distinguish between different kinds of coffee.

2bats profile image
2bats

I find 2 senokot taken with a lot of water at bedtime helps, it’s better than Fybogel and Movicol. I’ve stopped taking Ropinirole and Sinemet AND I’m on a Keto Diet, so I’m ‘bound’ to have the problem!

I too tried expensive CBD oil without THC and found it had zero effect.

Easilly’s advice sounds good and I’ll try the other guys’ suggestions too!

pad10 profile image
pad10

Three things keep me regular.... eating fiber (fruits, veggies, whole grains) 200-400mg magnesium daily and keeping hydrated. When i mess up on any of the three for more than a day or two things stop moving.

M-o-ggy profile image
M-o-ggy

Try black Cummin oil. It Works. I take it once a day.

nanbaby4 profile image
nanbaby4

Two Comfortone daily from Young Living and Dr Swartz formula#1 really help. I also have a colonic every other week

Sunnysky profile image
Sunnysky

Hi billie boy

I don't know how long you have been taking Movicol but I must tell you you need to read the information leaflet in the box it says that this medication has the potential to interact with other medications by altering their absorbtion....... this is disasterous for PD sufferers because our meds must be not only be on time but be the most effective efficacy possible

From personal experience I suffered for three weeks almost unable to walk and do the basic daily things I had been doing quite well prior to starting Movicol before I realised the PD meds I was taking had been diluted.

I'm aware we don't all respond to meds the same way but it's worth knowing that products like Movicol can dilute any other meds you take

And. It happens so subtely you can't pinpoint the reason immediately

I now take Chelated Magnesium to bowel tolerance and have it under control hope you find this helpful

Cheers.

Sunnysky

billyboy11 profile image
billyboy11 in reply to Sunnysky

I am not sure if my earlier reply worked so here goes again. Thanks for your response and I had already noted your concern about Movicol and stopped taking it .

I am on the Tireman high-dose protocol for 2 weeks and it has helped but I'm not clear yet.

Many thanks for your care and concern.

Bill

Sunnysky profile image
Sunnysky in reply to billyboy11

Hi again Bill

You very welcome

You can get lost on this site sorry if I've doubled up on some info or missed some!?

Sunnysky

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