Helping Those Who Care for Parkinson's Patients
| [Home] [Forum] [Help] [Search] [Register] [Login] [Donate] |
| You are not logged in |
|
| ||
|
We made it 5 months, through four weeks of adjusting, through an injection site infection that lasted 6 weeks, through a broken pump and a replacement. ... It's just not working as well as the pills, and I'm exhausted. I messaged the doctor that we are going back to the Rytary tomorrow, and that I would like to go back to the sinemet over Christmas break. Mom did great in the spring of '24 on the sinemet, four halves of entacapone, and two overnight sinemet CR on program 1 of her DBS. After switching to the Rytary in the summer of '24, I couldn't get program 1 to work well with it. The nurse told me to forget about it because the Rytary was a new factor. So I forgot about it. And by the time school started in August of '24, she was doing well enough on the Rytary to keep using it. But slowly over that year she needed more quarters of sinemet to get from dose to dose, especially in the afternoon and evening. Then we shifted to the pump in June this year, and I was expecting marked improvement. ... She was somewhere between 85-95% of what she was on the sinemet on the Rytary. And on the pump she's about 70-80% of what she was on the Rytary. I feel like we are down about half of what we were at a year and a half ago. ... I'm trying not to be upset about it, but I feel like I'm turning into one of those old people who is mad at the doctor's all the time. I feel like we lost a year and a half, which isn't entirely true since she did ok on the Rytary, and there were episodes where she did well on the pump. It's just that overall, everything is worse. ... I was thinking this morning that in the past, if a doctor only had one thing to suggest to try, they would always suggest it even if it wasn't warranted, or didn't work very well. I'm thinking that this may be another of those situations. First it was the Rytary, then the pump. Maybe they were both worth a try, but she was already doing well on the sinemet and program 1 a year and a half ago. The only reason I agreed to a change was because she was supposed to be better. |
| ||
| Sorry to hear that Greyeyed. Hope things get better for you and Mom. |