Eliminate the off time.: Well this worked... - Cure Parkinson's

Cure Parkinson's

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Eliminate the off time.

Don_oregon_duck profile image
9 Replies

Well this worked for me testing it over the last 13 months. It's a simple solution.

At the end of January 2020 I moved into an assisted living facility. Necessated more from my neuropathy than pd. I chose to have my meds dispensed to me by the, which they did always with in fifteen minutes of the scheduled time, ALWAYS. From January 2020 until March 2021 I had no cd/ld off periods. I had been having an off period 2-3 times a week. I started thinnking about it half way thru the year quietly. I wonder if I can make full year without an off period. I am presently starting my fourteenth month without a down period. I believe that taking cd/ld at the prescribed time without fail elimated my down times.

For those of you who want to ask questions I will give you all my answers now. I am am taking Ritary a sustained release cd/ld. I added some B-6 and B-12 about seven months in. I am taking 3 grams of B-1 daily. Other then that I changed nothing else the entire year. I suggest you try this before asking your questions. You already have my answers.

Don

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Don_oregon_duck profile image
Don_oregon_duck
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9 Replies

Rytary? What size dose and how many times a day?

OREOLU profile image
OREOLU

Hi, I also take Rytary and have often thought about this that the inability to take cd/LD at the same time everyday usually cause the off periods. I concur with you Don.

chartist profile image
chartist

Hi Don!

Good to see a post from you again! I haven't seen any posts from you in some time.

What are you using for the PN and what are your symptoms like?

Art

jimcaster profile image
jimcaster

Hi, Don! I am DELIGHTED to hear from you, especially because you have good news! Thank you for befriending me when I was a newbie. 😊

JayPwP profile image
JayPwP

B6 and B12, What time and dosage?

TL500 profile image
TL500

Hi Don, Thanks for your info.

Did your down time disappear before started taking B1, B6 and B12?

How long have you been taking meds cd/ld?

What do you mean by with in 15 minutes of scheduled time? eg. scheduled time is 8am, take it at 7.45am?

How far apart are your cd/ld?

Do you take B1, B6 and B12 at the same time and close to medication?

Is it possible you share your schedule of meds & supplements (B1 ,B6, B12 etc.) listing times please?

I have down time with every kinson tab wearing out, that is 3 times per day. I take meds about half an hour before starting exercise class or activities or shops. This is why I can't stick to same time everyday.

Thanks.

richardo123 profile image
richardo123

You are exactly right . My wife had v o n nurses come into our home and give me meds same time every day that she worked. Result was less off times . Not complete like you but certainly BQL (better quality life. Have an awesome on time day .

LeharLover62 profile image
LeharLover62

I wonder if the High Dose Thiamine might also play a role here? I noticed my husband’s off times, while not eliminated, were significantly better and milder after starting thiamine. (He’s now also effectively eliminated his by taking mannitol.)

Smittybear7 profile image
Smittybear7 in reply toLeharLover62

How much mannitol does he take and how does he take it?

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