What is normal?


#1

I take one sinemet, one azilect and one mirapexin with breakfast.
Another sinemet at lunchtime.
Finally my last sinemet at 6-8 pm in the evening.

Does anybody else have a similar dosage?

I have just bought some CBD oil in purple.
I have no idea when to take it for the best results.


#2

Hiya H
From what I gather we both take similar medication in that Sinemet and Co beneldopa are both in the same category of dopamine precursors and ropinirole and mirapexin are both dopamine agonists.
However, you seem to be taking yours with meals and I was told to take mine at least 30 mins before food especially protein.
So I take 1 (100/25mg) Co-beneldopa at 8am Breakfast at 8.30ish, plus
3 (2gm) Ropiniriole, plus
1 (1gm) Rasagiline
1 more Co-beneldopa at 1pm, lunch between 1.30 and 2
1 more Co-beneldopa at 6pm

I am finding the beneldopa fading off so will be asking P Nurse when I see her next month.
If I were you I would seek clarification on if you should be taking your meds with/before/after meals

Sorry pal but I have not taken any CBD oil.
I hope this is of some help.

Best wishes,
Mal.


#3

Hi Mal.
Thanks for that.
I am terrible with taking my meds.
I have no set routine I often forget to take them because my life is so hectic and although I usually manage to take everything I need to. It can be pretty random.
My first three tablets I take now.
I am always awake at 4-5 am.
I usually get some sleep 6-9am and feel quite good when I wake up.
I manage another sinemet early afternoon then another in the evening.

My big problem is the tiredness.
Not mentally but physically.
Even walking is a massive effort and I have piled on weight
I can’t get motivated to excercise.
My legs ache constantly and getting up from a chair is often a trauma.

My mind wanders sometimes and I have to be careful of blanking and staring.

Getting out of cars and turning over in bed are other things I find difficult.

Time for a nap.
Regards
H.


#4

Hi H.
My life is no way as hectic as yours,
even so, I will share with you something that helps me,
( hope you dont think im trying to teach sucking eggs!! )
but in addition to painkillers, I take 140pils a week at various times during the day.
I sit down once a week and do my “pharmacy” I have a litle pill box with 7 trays in, each with 4 compartments. Each tray is small enough to carry in your pocket.
I then set my alarm on my phone or watch to remind me when my meds are due.
I would be lost without this little aid, my wife bought it at Boots

On the subject of aching legs, I always put mine down to arthritis but there are so many members saying they have the same problem I am now thinking its more to do with PD!

All the best H,

Regards
Mal.


#5

Malc you sound like my wife LOL.
Don’t take that the wrong way because she has held me together over the last 40 years and I love her dearly.
I am unorganisable though.
I know if I miss my meds because I feel like crap.
I constantly miss doctors appointments etc
I am also stubborn and won’t do what the medics tell me to do.
It’ll be the death of me one day.
Keep smiling
H


#6

Hi H.
No offence taken.
You obviously know yourself what it is you need to do
Sometimes I need to have a picture drawn for me when the answer is simple::thinking:
L8z
Mal.


#7

This is a joke before anyone takes offence but normal is a setting on a washing machine, nothing more or less lol


#8

What’s a washing machine?


#9

Hi Hubby,

I hope you’re feeling in better spirits today.

If you haven’t already explained this to your Parkinson’s nurse how you’ve been feeling recently, then I would advise that you do so he/she can offer you additional support or even review your medication if necessary. Don’t forget our helpline is also here to help as well so please do not hesitate to contact them.

Take care for now.

Best wishes,
Reah


#10

What is a washing machine?
It’s an appliance to get your clothes clean
Our friend “P” is correct
Normal is one of the settings, high and low is too
but be very careful your clothes don’t come out blue

The instructions are usually written with clarity
to make sure your clothes don’t go in the bag marked charity
they may mention detergent or softener or other such phrases
that’s not a time you should be drinking cervezas

In days gonebye before these things were invented
our poor wives did it all by hand
a toil from which they never relented
so come on H don’t be a jerk
get to know how these things work


#11

:joy: LOL.
I’ve been told.
Nice one Mal.

Reah
I don’t have a Parkinson’s nurse.
There’s just me and my sense of humour.

H.


#12

Hi Hubby I was told to take sinemet on an empty stomach (I don’t know about the other meds as I’m not on them) & not to eat anything until about 30mins of taking them. The neurologist explained that food acts like a barrier preventing the sinemet getting to it’s target.


#13

Thanks.
I have never been told that.
Amazing!


#14

Hi nufcash yes quite correct in saying food, or more correctly protein rich food will stop the absorption and therefore therapeutic effect of the levodopa preparation you are on. The same happened with me and Stalevo. I try, not very successfully lol, to avoid protein rich foods when I have things to do and instead have a carbohydrate diet during the day and a protein rich evening meal when there are not so many things to do. Gee, I do miss egg and bacon breakfasts though lol


#15

Hi Hubby,
I have been taking the CBD oil at night just before I go to bed.
I find that it helps me to sleep well ( well better anyway).
I just pop three drop under my tongue.


#16

Best not to take meds at meal times, the protein blocks absorption of the levodopa. At least 1/2 hr before or after


#17

Some good tips.
My usual one hour catnaps have extended to three hours sometimes four.
If I didn’t have to pee I might sleep right through.


#18

Hi Hubby,

A sense of humour definitely helps! If you haven’t had contact with a Parkinson’s nurse, you should definitely raise this with your GP so that they can arrange this as soon as possible - however, I appreciate how lengthy this process can be depending on your location. If you contact our helpline, we can arrange for a Parkinson’s nurse to call you back within 24 hours.

Feel free to give them a call.

Best wishes,
Reah


#19

Thanks Reah.
I wouldn’t know where to start!
I think that I am doing ok at the moment.
Hubby


#20

Hi Hubby,

Glad you’re doing well at the moment but our helpline is there if you need it. :slightly_smiling_face:

Best wishes,
Reah