1. < Parkinson's Disease
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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?

Interested in more discussions like this? Go to the Parkinson's Disease Support Group.

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bmfoster | @bmfoster | 1 day ago
In reply to @kshansen "@bmfoster It is hard to describe to someone who is not affected the swings in how..." + (show)
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@bmfoster It is hard to describe to someone who is not affected the swings in how I feel day to day or hour to hour.

That is so true about the swings in how I feel! About an hour ago when wife asked about breakfast I was not sure I could even handle that, but I did go ahead and had the cereal with blue berries(sucks that I had to try three times to get the spelling for berries right!) And now I'm thinking about cutting some fire wood! Not! for this month, probably for winter of 2027 and 2028!

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@kshansen Your humor is greatly appreciated and makes it easier to face some hard stuff!! Thanks

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goatgirl28 | @goatgirl28 | 15 hours ago

That I can, my friend, and I revel in those moments of pain-free stillness.

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agusti | @agusti | 14 hours ago
In reply to @hopeful33250 "@bmfoster I agree; the heat is definitely detrimental to PD patients. I love to walk outside,..." + (show)
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@bmfoster
I agree; the heat is definitely detrimental to PD patients. I love to walk outside, but never do it when the heat and humidity are high. I've found YouTube exercise videos to use when the weather doesn't permit outside exercise. During inclement weather, I will often use grocery store delivery services. There is a fee, but it is worth it.

It is a difficult road to walk, but adjustments can make a world of difference. I'd love to hear how others are adjusting to the changes in temperature.

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@hopeful33250 Hola atodos. Realmente esta calor (41º C) es bastante molesta, No sé cuanto afecta a los enfermos de Parkinson. Lo cierto es que este verano ha sido horrible (al menos para mi). Cuándo pensaba que los síntomas se alejaban, han vuelto con más fuerza. Canviar la dosificación del Sinemet ha ayudado. Pero no veré a mi neurógo hasta diciembre. He encontrado ayuda en mi doctora de cabecera que, aunque no es especialista en neurología, me escucha cuando le explico mis síntomas y me conaprende. No sé si a todos os pasará igual, pero yo encuentro mucha ayuda en alguien que comprenda la enfermedad.

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bmfoster | @bmfoster | 10 hours ago
In reply to @hopeful33250 "@bmfoster I agree; the heat is definitely detrimental to PD patients. I love to walk outside,..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@bmfoster
I agree; the heat is definitely detrimental to PD patients. I love to walk outside, but never do it when the heat and humidity are high. I've found YouTube exercise videos to use when the weather doesn't permit outside exercise. During inclement weather, I will often use grocery store delivery services. There is a fee, but it is worth it.

It is a difficult road to walk, but adjustments can make a world of difference. I'd love to hear how others are adjusting to the changes in temperature.

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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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Teresa, Volunteer Mentor | @hopeful33250 | 10 hours ago
In reply to @agusti "@hopeful33250 Hola atodos. Realmente esta calor (41º C) es bastante molesta, No sé cuanto afecta a..." + (show)
Profile picture for agusti @agusti

@hopeful33250 Hola atodos. Realmente esta calor (41º C) es bastante molesta, No sé cuanto afecta a los enfermos de Parkinson. Lo cierto es que este verano ha sido horrible (al menos para mi). Cuándo pensaba que los síntomas se alejaban, han vuelto con más fuerza. Canviar la dosificación del Sinemet ha ayudado. Pero no veré a mi neurógo hasta diciembre. He encontrado ayuda en mi doctora de cabecera que, aunque no es especialista en neurología, me escucha cuando le explico mis síntomas y me conaprende. No sé si a todos os pasará igual, pero yo encuentro mucha ayuda en alguien que comprenda la enfermedad.

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@agusti
When you say, "Canceling the dosage of Sinemet has helped," I'm wondering whether you have stopped taking it altogether or just reduced the dosage?

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agusti | @agusti | 8 hours ago
In reply to @hopeful33250 "@agusti When you say, "Canceling the dosage of Sinemet has helped," I'm wondering whether you have..." + (show)
Profile picture for Teresa, Volunteer Mentor @hopeful33250

@agusti
When you say, "Canceling the dosage of Sinemet has helped," I'm wondering whether you have stopped taking it altogether or just reduced the dosage?

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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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