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My Parkinson's life is so confusing - this is not easy.

Posted by johnnyvsn @johnnyvsn, Oct 27, 2024

I was officially diagnosed with Parkinson's May of 2019. I have been taking Rytary since diagnosis and can say it really does help me feel "normal", but just for windows of time. Sometimes the windows lasts a very short time, sometimes longer. I am not as sharp minded as I used to be. I just don't understand how my body can feel so bad a lot of the time, then feel normal at other times. Does anyone else struggle with accepting this as just the normal life of a Parkinson's sufferer?

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Teresa, Volunteer Mentor | @hopeful33250 | 9 hours ago
In reply to @agusti "@hopeful33250 Lo siento. Seguramente ha sido un error de traducción. Nunca he hablado de cancelar la..." + (show)
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@hopeful33250 Lo siento. Seguramente ha sido un error de traducción. Nunca he hablado de cancelar la dosi (y si lo hice me equivoqué). Yo hablava de pausar la dosi. Empecé hace más de tres años, con dosis de 1-1-1-0'5 pastillas repartidas entre las 8 de la mañana hasta las 9 de la noche. Actualmente estoy con 1'5 (9h)- 1'5 (13 h) - 1'5 (17h) 1-(21h). Después, a las 22 h tomo Ongentys. Lo que ha hecho el neumólogo ha sido aumentar la dosis y disminuir la frecuencia.
Lamentablemente, no he podido dejar de tomar Sinemet, ni tampoco, por ahora, la he reducido.

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@agusti
Thank you for clarifying! Are you feeling any better now?

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Teresa, Volunteer Mentor | @hopeful33250 | 9 hours ago
In reply to @bmfoster "@hopeful33250 I have a treadmill in front of the TV in my husbands study and try..." + (show)
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@hopeful33250 I have a treadmill in front of the TV in my husbands study and try to get me walking in that way when the temperature and humidity are up. I also have a home exercise program designed for me by PT/OT geared towards PD patients which helps me stay active.

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@bmfoster That all sounds good! It is important to find an indoor exercise program during inclement weather.

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