Meds and movement: Hi all. Funny thing... - Cure Parkinson's

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Meds and movement

jeeves19 profile image
40 Replies

Hi all. Funny thing happened to me this morning and I wondered if anybody else has experiences of movement (either it's presence or absence) affecting their meds? Two days ago I heard a neurologist on YT claiming that not only was an hour before food the best time to wait when taking meds, but that it was important to take a large glass of water to flush the meds into the intestine. Tried it Sunday and it worked brilliantly. Result. Tried it again this morning and I was gravely disappointed. My meds (a Madopar, an Azilect and a Ropinerole), didn't work at all. I was and remain amazed at the difference between one day and the next. What changed? The only thing I can think of is that for the hour between taking meds and breakfast, I lay in bed and read. So, how far is 'some' early movement required to initiate a drug response? Your thoughts appreciated.

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jeeves19
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laglag profile image
laglag

The same thoughts have come to me also. I think you have something there. The meds seem to work better when I take a warm shower too. The only thing with that it's a little difficult to take a shower when your meds are not all the way kicked in. I thought maybe I was just imagining it, like a placebo type thing, but maybe there's something to it? Thanks for bringing that up.

Masterka profile image
Masterka in reply to laglag

Yeah, it works for me too when I take a quick shower immediately after taking my meds. I also use soda to stop any breathing difficult y that occur, helps the meds to kick in also.

laglag profile image
laglag in reply to Masterka

I use soda for the same reasons!

ruff1 profile image
ruff1

Drinking a glass of water/squash the help the medication move through the digestive tract is something we were told when John was first diagnosed. I def think moving around helps John and the shower was a revelation a few years ago , it def helps to get John going , even if it’s a placebo effect !! X

ssrs profile image
ssrs in reply to ruff1

We have noticed when my husband showers, his strength in his arms and legs gets worse. It gets better after a bit. We think it is the heat of the water.

Astra7 profile image
Astra7 in reply to ssrs

The heat of the shower makes me feel very weak and a bit breathless. I worry I’ll fall over.

Buckholt profile image
Buckholt

For me, sitting or lying down whilst the meds get to work is best. But everyone is different

park_bear profile image
park_bear

It is my practice to drink plenty of liquid with my meds to be sure they get down my dry esophagus all the way to the stomach. If the stomach is working properly meds will not immediately wash into the intestine. The stomach will process its contents first, and when it decides that is done will then allow flow into the intestine.

pdpatient profile image
pdpatient

Jeeves et all. Try this option every time you take Levodopa in any form: a glass of orange juice, fresh squeezed with no additives. Works in 15 minutes or less in a morning first thing. Half hour or more with food in the stomach.

I guarantee it🤙

Other low calorie options are available and I have written about it. Just look up my posts.

jeeves19 profile image
jeeves19 in reply to pdpatient

So can it be Tropicana or do I have to juice the oranges?

pdpatient profile image
pdpatient in reply to jeeves19

Jeeves, Tropicana works well. That's what I use. Frankly, it's the right amount of Vitamin C.

I bought the powdered version from bulksupplements and I ended up getting dyskinesia in minutes with rapid absorption of Levodopa. Could not find a right dose.

My wife decided to have me try orange juice and it has worked perfectly so far with Rytary. Should work better with Sinemet.

jeeves19 profile image
jeeves19 in reply to pdpatient

Thanks buddy!

pdpatient profile image
pdpatient in reply to jeeves19

You are welcome, Jeeves. Let me know how it goes.

OREOLU profile image
OREOLU in reply to pdpatient

Hi pdp,

does this always work with your Rytary in 15mins as claimed?

pdpatient profile image
pdpatient in reply to OREOLU

Recently, Yes, Oreolu. But, you also need to keep a substantially empty stomach throughout your working day. A heavy meal even if protein free cannot be overcome. Ironically, a totally empty stomach through fasting is also trouble. In this case it leads to dyskinesia. My wife has trained me over the past few weeks to have micro meals every two hours consisting of just veggies or fruit.

I have to admit that I was not happy with her suggestion of orange juice because I am diabetic and this added juice has worked havoc on my blood sugar levels. That is why I bought the ascorbic acid powder and tried my hardest to get the right dose. It was never right. I would either get immediate dyskinesia or it would not work at all. On a whim, when my wife understood that it was the vitamin C that made that difference, she poured me half a glass of orange juice. I was shocked to see the rapid response of Rytary. No need for supplementing with Sinemet.

I have to also tell you that it was a combination of someone's post in this forum who wrote that he/she found great results with orange juice and didn't understand why. Other people on the thread reported excellent results with coca cola are other carbonated beverages and speculated that the carbonation was responsible for the results. I found ascorbic acid to be an ingredient in those drinks.

I then went over to the Rytary site and researched the other non pharmaceutical components of Rytary and they explicitly say that ascorbic acid is added for increased absorption. Looks like it is perhaps not enough.

If you can tolerate orange juice without affecting other aspects of your health, then by all means go for it. Other Vitamin C options that people on that thread mentioned was to take the cold and flu supplement called emergen-c. You might have to see how much orange juice you need to drink before you see results and then stop at that if you are concerned about the calories and sugar. Otherwise go for it with a full glass 🤙

If you remember, I was advocating grapefruit juice because I found that it worked better and faster. I never understood why but now it makes sense because it has far higher amounts of Vitamin C. I believe that you were concerned about medication interactions with grapefruit juice which is a real known problem. Orange juice seems like an acceptable compromise

I hope this helps.

jeeves19 profile image
jeeves19 in reply to pdpatient

Great post. Where are you in the U.K. out of interest?

pdpatient profile image
pdpatient in reply to jeeves19

Jeeves, I am in the USA 😅 San Francisco. My brother lives near London.

BlueHawaii profile image
BlueHawaii in reply to pdpatient

My son and his wife live in San Francisco. I have a daughter in Southern Calif. near where I was born and raised. I got transplanted to Arkansas where I have never liked. I have an ex husband that has another ex, and she has PD too. We lived on the same property when married to him. Seems very strange. My neurologist says it could be the well water we drank there.

pdpatient profile image
pdpatient in reply to BlueHawaii

It's possible, yes. Be no one really knows

pdpatient profile image
pdpatient in reply to jeeves19

Jeeves, out of curiosity myself, I wonder why you presumed that I was in the Uk?

jeeves19 profile image
jeeves19 in reply to pdpatient

I think there’s a link to a BBC news item on your personal info description. So I presumed that this was your usual newsfeed go to.

pdpatient profile image
pdpatient in reply to jeeves19

Yes indeed Jeeves. I am unfortunately forced to rely on BBC in the absence of reliable reporting in the USA 😊. Good catch!!

jeeves19 profile image
jeeves19 in reply to pdpatient

They have their own trendy agenda too unfortunately these days. They have a particular world view and skew everything towards this. Be careful. They’re not unbiased any more. 😕

Limpy932 profile image
Limpy932 in reply to pdpatient

Sorry. Just want to make sure I understand. I am newly diagnosed and just started taking increasing amounts of Levadopa. Have to take at 8am, 1 pm & 6pm. So, I take on an empty stomach with orange juice? Container says to take with food. Thanks everyone for your help. Getting used to this new stage in my life.

pdpatient profile image
pdpatient in reply to Limpy932

Hi Limpy, welcome to the forum where you become instant family. You will find mostly friendly fellow Parkinson's sufferers here, although a few have their own idiosyncrasies and strong beliefs. We tend to forgive them their trespasses just like the Lord's prayer tells us to do.

If you are newly diagnosed, then enjoy the new life with Levodopa while it lasts. Your body is super capable of adjusting rapidly to varying amounts of Levodopa in the blood plasma and you will generally be able to operate like before. This is true in my observation and my opinion (got to say that before Hikoi and ChrisWF come after me 😅).

Once you get to my stage or before ( i am 8 years post diagnosis) and again this is my opinion and observation, you have to change and modify your lifestyle. First thing you would do is to eliminate all protein in your diet and save the daily intake of protein till the night or to whatever point at which you are done with your days work. This is because protein interferes with Levodopa for absorption in the small intestine.

Next, some people like me still have a problem with Levodopa absorption even after elimination of protein. Some of us choose to battle it by fasting through the day with a newly popular technique called Intermittent Fasting (IF). IF lets you fast throughout the day and eat anything and everything you want during a small window at the end of about 16 or 18 hours. Needless to say, it's better to choose to fast during the day and eat sensibly at night (disregard the eating anything and everything part. That is only for the lucky, normal people). Do take a sensible amount of protein at night, but don't overdo it. For example, don't have an entire meatloaf. Your aging Parkinson's body will not forgive you or forgive the abuse.

I have much more to say but I will let you "digest" this for a while. In the meantime, the short answer at the end of a long answer is - do as you please for now. If you like orange juice, go for it. If you don't, feel free to ignore it.

There are people in this forum who call the initial period that I just described as the "Honeymoon phase". They claim that it lasts about 5 years. But the truth of the matter is that it depends. It depends on your own life style and the choices that you make from now until. Such as exercising for instance.

If you don't limp in actuality, consider John Pepper's fast walking technique. You will find people on this forum attacking him for promoting it as an alternative to medication. However, feel free to take his advice as it pertains to your own lifestyle. For example, you don't need to give up medication in order for benefit from fast walking. You can do both if you're so inclined.

in reply to pdpatient

"although a few have their own idiosyncrasies and strong beliefs. We tend to forgive them their trespasses just like the Lord's prayer tells us to do."

And we forgive you for simply being wrong about some things 😊

rebtar profile image
rebtar

If the sugar s too much in the orange juice, how about fresh lemon squeezed into a glass of water?

pdpatient profile image
pdpatient in reply to rebtar

Rebtar, I will have to try that. Thanks for the tip. Did not think about it.

Somic67 profile image
Somic67

my experience: first med, empty stomach, morning: 7 am : 15' to onset , 9:30 am 25' to onset (in avg)

gym before meds accelerate onset.

the shorter the onset, the longer the duration (and vice-versa)

for the records: meds taken going to bed at 10 pm with a bread and butter snack happened to kick in 2/2:30 hours later (i was awake off and went on for a short period) but lasted 1/3 of the time (20/30 min)

Erniediaz1018 profile image
Erniediaz1018

Although I use levodopa from mucuna pruriens sometimes I get that same experience you do. It’s a hit and miss 🤷‍♂️

Husbandsupporter profile image
Husbandsupporter

IMHO, after you tally the meds, it may be better to stay upright: stand or sit, for about 30 minutes. lying down too soon may prevent the digestion and dissolution of the meds into your system.

Look up each med and see if anything shows up about taking and lying down shortly thereafter.

Just a thought to try.

Godiv profile image
Godiv

For me, my water quantity when I take meds doesn't seem to matter either way. However, the doctor had told me that I could take Rytary early in the am, then leap (ha) back into bed to wake up later, all limber and lively. That's not the case at all; I think it makes me feel a bit worse ... so perhaps moving around a bit does help? On the other hand, it's difficult to move around before the meds get into your system. But perhaps gently moving around? Also, like someone said, being upright?

The OJ Method sounds interesting.

pdpatient profile image
pdpatient in reply to Godiv

Godiv, have you tried the OJ supplementation?

Godiv profile image
Godiv in reply to pdpatient

I did and didn't see a difference :(.

pdpatient profile image
pdpatient in reply to Godiv

Maybe, it's all in our heads after all. 😂.

My sugar levels went through the roof after my love affair with OJ and I "reluctantly" decided to stop. Now, I have started to re-experience reduced Rytary absorption.

I see that one person's experience is not easily replicated to other Parkinson's patients. Makes it so much tougher.

in reply to pdpatient

"my love affair with OJ"

You think he was innocent? The evidence is pretty damning, no?

Godiv profile image
Godiv in reply to pdpatient

Haha! :)

I'm sorry it didn't work for you either. I wonder about Rytary sometimes ... my doctor talked like it was the be all, end all, but it's not. I do find that it does well on a totally empty stomach -- seems to kick in faster that way. Have you been able to do that?

Astra7 profile image
Astra7

I’ve been drinking large glasses of water with my meds as instructed by my neurologist. Does seem to make quite a difference to speed of effect. Also makes me have to get up twice a night😞😞😞

pdpatient profile image
pdpatient in reply to Astra7

Getting up fast enough to not leak on the way to the bathroom is the most difficult part😅😂

BlueHawaii profile image
BlueHawaii in reply to pdpatient

Use one of those urinals like they have men use when in the hospital, and they can't get up to use the restroom.

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