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My mom has Parkinson's and I'm deeply involved in her treatment. She has had PD for 11 years now. Seeking your honest advice and experiences on what we might expect, as the efficacy of Rytary on her condition seems to have gone down:
She was taking Sinemet and Sinemet CR for the first 8 years; and by the end of this time, she spent way too much time stuck in bed. Note that laying in bed makes her tremors get lighter or go away. That said, way too much "off time" despite experimenting with Sinemet and Sinemet CR.
In Year 9 (2019 year end), we switched Neurologists (the old one wasn't great at adjusting medications etc). The new MDS suggested we try Rytary. It was life changing. Indeed, her off time reduced and she got many productive hours back. No longer in bed all day.
Fast forward another 2.5 years...into Year 11, she's seeing a lot of downtime again. If she takes Rytary at 6 am, 12 pm and 6 pm - she'll have tremors an hour before every dose switch AND 2.5 hours after dose switch.
Tremors: 5am, 8:30am, 11 am, 2:30 pm, 5 pm, 8:30 pm, 11 pm...LIKE CLOCKWORK! ⏰
We tried increasing her Rytary dosage (adding a fourth dose and cutting time between doses), but it's affecting her balance and giving her a foggy mind.
QUESTION: 1. Have you experienced or seen foggy mind and more imbalance from "too much Rytary?" 2. Don't know what to do or expect next. Is there a miracle drug or treatment we can try after the 2.5-yr honeymoon on Rytary that seems to be ending?
Note on DBS, 100% of her friends who have had it have had a terrible experience afterwards - so not sure she will agree to it. Really trying to understand medicinal options and experiences here, but also accept that maybe we are at the end of the road with Carbidopa/Levodopa 😢😢
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