Concerned Daughter

[ElizabethDavis50]

My mother was told she has PD. She never has "shakes/tremors" but she does complain of feeling paralyzed or frozen time to time from her pain. Her sinemet or carbadopa actually makes her feel horrible initially for the first hour or so. Then she can function fine but only for two hours then back to her meltdown wanting another pill. Has anyone experienced this??

[Hikoi]

Elizabeth

many people with PD do not have a tremor. Their symptoms are more stiffness, gait problems and instability. How long has she been diagnosed Elizabeth?

As the disease progresses we are less able to store the levadopa we get in the pills and we need to take them more fequently. When that happens they only last a short while 2-3 hrs for some people, so what you describe is common.

There are drugs that work to make the levadopa last longer and some people find long acting sinemet better than short acting, or a mixture of short and long. Perhaps your mum could do with a med review and have her meds adjusted.

[Donzim]

You might want to test her potassium level. Or just give her electrolytes (PureCaps) or drink Gatorade for testing purposes. Has too much sugar for long term but it would tell you that it’s probably some deficiency in electrolytes.

[DianeF]

I agree with Hikoi. I had a terrible time with the short acting c/l. The extended release worked better for me. It delivers a lower amount of levodopa, but it is delivered at a more consistent level. I also learned if I take it an hour before I eat or 2-3 hours after, I am not nauseous. If I eat the least little thing immediately before or after, I become very nauseous for about an hour.

[park_bear in reply to DianeF]

Same here and good catch. If her mom is taking the immediate release form she may be feeling horrible from being overdosed.

[rjpinette]

It all depends on the type of sinemet she's taking, there are quite a few different kinds. My husband was initially taking the c/l and he stopped taking it because of side effects. Now he's taking c/l ER (extended release) and it does not bother him at all. Have her check and see what type she's taking.

[rjpinette in reply to rjpinette]

I'm replying to myself but really the person asking about this. The med c/l does not tell you how to take it but it's important to take it this way (the new neuro dr. told us to do this): take c/l wait 1 hr and you can eat any protein you want (you can have toast with jelly and small amount of butter if you have to eat then) or eat your protein and then 2 hrs later take the c/l. This was HUGE for us, we did not know this at all and he was taking the pill in the wrong way and the c/l wasn't doing it's job. Now it is.

[Teafor22 in reply to rjpinette]

Hi. My. Pill time. 8. 12. 5. 10. Does not interfere with protein.

[Teafor22]

Yes. I feel awful too. Then good. Then meltdown not so good

I take 5 times a day. Helps a lot

Dot

[ElizabethDavis50]

This group is such a blessing. Everyone says my moms symptoms are in her head but I know she's suffering g. Thank you all for your responses I'm going to show her right away!