Connect
My Parkinson's life is so confusing - this is not easy.
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?
Like
Helpful
HugInterested in more discussions like this? Go to the Parkinson's Disease Support Group.
Connect
@kshansen Your humor is greatly appreciated and makes it easier to face some hard stuff!! Thanks
-
Like -
Helpful -
Hug
4 ReactionsThat I can, my friend, and I revel in those moments of pain-free stillness.
@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.
View Translation
-
Like -
Helpful -
Hug
3 Reactions@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.
@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?
@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.
View Translation
@wolfplanetzero
lilyanne here, i have read that "humming" is nitric oxide being released and good for you. hum like a bee is what i read, it opens the blood vessels. i loved singing, but due to thyroid cancer, can no longer sing...........nor HUM. isn't that a bummer. BUT......i sing and hum in my mind. i kicked the devil to the curb. have a fun day. remember the song: pretend.......well......that's what you have to do and a lot of the time........it does make you forget your troubles.
-
Like -
Helpful -
Hug
1 Reaction@bmfoster
I too like to walk esp with my wife--but she is an avid walker. me not so much esp in the heat I might do a shortened walk with her or i stay inside--I have a small foam pad I use inside while watching tv I just step on and off of it trying to work on balance issues. my wife bought me a boxing light up machine punch the panels that are lit up. it's a glorified whack a mole. I just got it and have not set it up yet. First things first I do have all my music ready for this new machine (cue Rocky).
@emmit Can't wait for the Fall to arrive so my husband and I can get back to "walking in the park." The heat here is 108 degrees indexed - a sure-fire way to end up on the ground with low BP. I used the foam pad and light up punch panel box in a course of PT and found them both helpful and doing any of it to music makes the time fly by. 🙂 When you can't do everything you used to do - then do what you can - or so my sweet husband says.