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?
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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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That I can, my friend, and I revel in those moments of pain-free stillness.
@kshansen Your humor is greatly appreciated and makes it easier to face some hard stuff!! Thanks
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3 Reactions@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.
@kshansen
Had to edit last text I originally typed 2007 and 2008! Dang brain is not working some days!
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3 Reactions@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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2 Reactions@kshansen I can recognize and identify with so much of what you describe. It is hard to describe to someone who is not affected the swings in how I feel day to day or hour to hour. The heat of this summer in SC has been particularly hard to deal with. The orthostatic hypotension and weakness experienced when I'm outside and doing any exertion is SO limiting. I've had to get a handicapped placard for my car so I can get my groceries from the store to my car without passing out. I know exercise is important, but some days it just seems to be too much to ask. I know that pity parties are unhelpful - so I get it out of my system and keep going. I do all I can to help myself, keep up with daily fluid intake and meds to support my BP and try to get a good night's sleep (when the restless leg syndrome cooperates). I also remember to say the Serenity Prayer: God grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference. Hang in there.
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5 ReactionsOk
@barryl
I wish you well! Will you post updates when it's convenient?
The VA is sending me to a psychologist next Monday, 7/27 to evaluate me for my Parkinsons Disease symptoms. This is more related to a compensation claim I filed with the VA in January, 2026. I'll try for a specialist for Parkinsons to do the physical therapy, as you suggested. Thanks, Barry
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