My perfect cousin…………..(intestine related)

[jeeves19]

I’m unsure how by many of you will know this funny little song by an Irish band called The Undertones, but it’s first lines go:

‘My perfect cousin. What I like to do he doesn’t’.

Strangely I seem to think of my intestines as some annoying, smug and dysfunctional relative. I can’t get rid of him but I wish I could. This morning I found myself singing the line ‘My useless intestine, what I like to eat he doesn’t’.

Context: had my first dose (200mg Madopar and a Comtan) at 7 am. Came on by 7.30, went really well until by 9.30 I could feel that I was going OFF. At 8, I’d had a breakfast of chia seeds (I’m such a ‘modern man’ 😂🙄), oats with banana and almond milk.

So I take 100 Madopar at 9.45, am still off at 10.30 so I take another 100. Still off by 10.50 so take a 50 ‘mg dispersible at this time. ON by 11.04.

Strewth! 😠😤

I checked the labels of what I’d had for breakfast. SOME protein sure, but not overwhelmingly so.

The culprit has to be my dysfunctional relative. He’s obviously compromised and possibly confused. I just wish that I could lash out at him with a long black sock filed with horse manure.

Here’s my question: why hasn’t/isn’t it part of the medical examination of PWP to have a really good look at our intestines? A little camera that journeys down and comes out the other end? Mine is obviously screwed, but I don’t know why, where and how. Why does he agree to deal effectively with the first dose but then completely bungle the second? Why is he so useless at his job? WHY DOESN’T A CLINICIAN ASSESS THE HEALTH OF THIS ORGAN?

Apologies for length of post but I’m *issed 😮😠.

[gaga1958]

very frustrating, if you discover the answer, you'll be a millionaire. what is a dispersible?

[jeeves19 in reply to gaga1958]

Madopar that dissolves in water and works quite quickly. 😊

[CaseyInsights]

Take your drug cocktail with vitamin C to aid absorption.

And yes, as is customary it may work for some but not for others. Here is an a study The Effect of Ascorbic Acid on the Pharmacokinetics of Levodopa in Elderly Patients with Parkinson Disease which notes it worked for 25 out of 67 participants.

pubmed.ncbi.nlm.nih.gov/156...

I know you not a fan of supplements but I have found them incredibly useful.

Give it a go 💥

[jeeves19 in reply to CaseyInsights]

Sure will. Thanks 😊

[Despe]

Jeeves,

Cleveland Clinic recommended Betaine HCl before every meal. Also, adding digestive enzymes will aid even more your gastrointestinal health.

[jeeves19]

Thanks Despe

[Buckholt]

I’ve often said I can eat or can move but not both. I know that protein makes a difference but for me, it can be any sort of food, so fasting around medication times is most effective. I also find swallowing a decent amount of liquid can help, not just a sip to get the tablet down.

The only advice about this is comes from forums and between PWP, whereas the medical profession doesn’t seem to offer any settled guidance. Certainly my neurologist prescribed Levodopa but gave no real advice about how to take it to maximise its benefits and reliability or whether any supplementation could be helpful.

So much research effort seems wasted but a comprehensive study to establish how to take levodopa could make a real difference.

[jeeves19 in reply to Buckholt]

An excellent point Buckholt. Thanks for your contribution.

[JJAJJ]

Ha yes cousin Norman would have preferred lemon juice to alcopops. Very wise ! x

[kaypeeoh]

I had to swallow a camera to check gastric function. It recorded movements and send them to a computer. They were adamant about not wanting the camera back. End result was normal gastric function but poor anal function. Essentially the bottom end wasn't sending messages of needing to poop. Hence constipation.

[Ratzkywatzky]

Has he got a fur lined sheepskin jacket? My Ma says they cost a packet!

[MarionP]

Don't blame you. Don't know the song or the artist but the concept is just like "cousins" in baseball. You use the term when referring to that special someone on an opposite team who, unique to him, has the ability to defeat you, regularly and consistency, to the frustration of everything you ever do about it. For instance I was a pitcher, and this so and so from another team always had the ability to knock me out of the ball game, he could hit my pitches with no trouble and he was the only one who could with regularity. I just couldn't seem to get him out. The phrase of interest would go like this: "My damn cousin took me over the wall again yesterday and I got to shower early." Meaning he hit a multi-run homer off of me and knocked me out of the ball game, coach pulled me out and told me I was done for the day.

[MarionP]

Seems like the more we learn about this thing, it makes sense to ask for a GI. Heck, my cardiologist knows about this stuff, came up in our last meeting.

[Enidah]

I'm in the process of getting an appointment with one of our GI doctors around here. If it goes the way it usually goes the appointment will be 2 months off or even more. It's a little frustrating. Yes my stomach and intestines have been giving me a hard time too. And my swallowing is not so good I did the modified barium swallow test and that helped to clarify some things.I have started using Miralax every night before bed and I think that it's giving me some relief and regularity. Worth a try.

Also I am in the same boat as far as the meds because they don't seem to have any Rhyme or Reason to what they do. Sometimes I can have protein and it doesn't even affect me other times I can just have cereal and they don't want to work. They really want to quit working around 7:00 every night. I drink a lot of warm or hot water which I tell myself helps. And yes, drink lots of water. Also, I have found mucuna to be a great help in getting meds working. I take the levodopa 99% L-dopa that I buy from Amazon.