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Fatigue
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nana6533 posted:
I would like to know how "YOU" cope with the episodes that come on with PD of complete and utter exhaustion! Episodes where it takes everything to get yourself up, let alone get dressed! The kind of episodes where your muscles are so fatigued that you can barely lift your limbs, feeling like you can't take another step because of the pain, fatigue, and the feeling of not being able to support your body frame...What do "YOU" do at these times?
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susiemargaret responded:
hello, N --

i go as slowly as i have to, cancel everything i can, and try to be patient with myself.

i'm so sorry you are having this PD symptom.

-- susie margaret

PS -- pat, is this you?
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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lovedogs1955 responded:
I also have this problem. Not only the stiffness and feelings of "lead" in my muscles, but there can be significant pain. I have this same sort of pain and stiffness in my diaphragm and other muscles involved with talking and breathing.

When I have a bad flare up, the best thing for me to do is STOP AND REST. It's not the kind of tiredness that can be slept off, tho, and that is hard for others to understand. I find that I have this problem after I have been busy for several days, and don't have the ability to stick to my usual routine. My friends and family are aware of my needs and support me wholeheartedly. In fact, often a few of my
 
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lovedogs1955 replied to lovedogs1955's response:
Whoops! I left off the rest of my sentence! What I was saying is that a few of my friends and my husband can often tell when I have reached "the wall" and tell me that I need to rest for awhile.
 
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nana6533 replied to susiemargaret's response:
susie...thank you for your response....and sorry, I am not Pat, my name is Mary. If any of you have chat sites, I would love to know them....talking is all i have for understanding right now.
 
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nana6533 replied to lovedogs1955's response:
Thank you for your reply, lovedogs. Does your throat ever feel like it is swelling?
 
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njladyluck responded:
Hi,
I too get very fatigued but do not have the option of resting. I work full time and then I have to exercise to keep the pd pain from the rigidity and stiffness away plus I'm involved in other activities. Before being diagnosed with PD I would let the overwhelming, exhausted, tired feeling control my life- I didn't know it was from pd then. Not now, I control the overwhelming, exhausted, tired feeling. When I think I cannot go on — I can always go on. I am in the beginning of Stage 2 and just came back from an exhausting vacation of walking/site seeing. Out of the hotel at 10:00 am and back at 9:00 pm taking the metro and walking. I loved every minute of it and even more so because I'm enjoying myself with PD. My life has not stopped. I have found this disease to be crazy. When not conscious of my walking pattern I walk funny but when I focus on my walking posture — I can walk as if I do not have PD. When I focus on how tired I am, I am tired. When I focus on not being exhausted it goes away. I go to Daily Strength.com support group for Parkinson and you will see there are different ways of dealing with life with PD. Today I am grateful I can choose the way I have chosen. I was listening to a web seminar from the Midwest PD Conf. shared on the Daily Strength site. A nurse used the word NEUROPLASICTIY and I looked it up on Wiki — I think this word explains what happens to my brain/body when I keep up my exercise regime and act as if I don't have PD. When I focus and act as if I do not have PD I trigger my brain to remember how my body is supposed to be behaving. That is my outlook on PD today, anyway. J
 
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njladyluck replied to njladyluck's response:
Dr. Stacy,

I would be interested to hear your thoughts on Neuroplasicity and PD. Thanks!!!
 
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nana6533 replied to njladyluck's response:
njladyluck....Thank you for your reply. :) I have found that the focusing on the walking helps too. I also have to strech and keep moving to keep the rigidity and stiffness lower. The fatigue when it hits me the way i am talking about, stops me from just about everything! Even when i try to fight it. I agree I will LIVE with PD! I will look up the neuroplasicity....I am interested in all information I can find. :)
 
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lovedogs1955 replied to nana6533's response:
I'm not sure if my throat ever feels like it's swelling, but my throat, neck and chest feel like they can't move and it gets very hard to talk. It's the same type of pain that I get in my other muscles throughout my body. When that happens, of course my voice is VERY soft and it's hard to be understood. It's very hard to explain how it feels.
 
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susiemargaret replied to njladyluck's response:
hello, NJ/LL --

dr. stacy might miss your neuroplasticity inquiry because it is in the middle of several others. if he doesn't respond within about a week, please re-post it as a separate discussion and put "DR. STACY" in the title.

thanks!

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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DUKE MEDICINE
Mark A Stacy, MD replied to susiemargaret's response:
Hi, susiemargaret
Thank you for letting me know of the question. I have not participated in this chain, because it would not be appropriate for someone without PD to discuss how to cope with the challenges of PD.

NJLadyluck,
Thank you for your question about "Neuroplasticity." In short, I do not know what that really means either! We do believe that the brain has significant reserve capacity. This reserve may be at the nerve terminals, the number of substantial nigra nerves and other brain structures that may become more prominent with the drop out of the cells (Substantia Nigra) initially affected in PD.

Symptoms of PD begin with a loss of 70% or the cells in the Substantia Nigra and more than 85% of the nerve terminal dopamine. If we find ways to improve this function of the cells or effectiveness of the dopamine in the cell terminals, we are working with the "plasticity" of the brain. Some suggest that vigorous, yet tightly defined, exercise improves the function of the nerve terminal (perhaps by increasing sensitivity or proximity of the next (connecting) neuron).

It is everyone's hope that we will find a way to increase substantia nigra nerve function by 5-10%; this would essentially reverse the symptoms of PD.
 
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susiemargaret replied to Mark A Stacy, MD's response:
hello, dr. stacy --

thanks for taking the time to answer this Q on neuroplasticity. i know you have many responsibilities, and we appreciate tremendously your contribution to us.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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susiemargaret replied to nana6533's response:
hello, N and mary --

quite by accident, i stumbled on this abstract to an article on neuroplasticity -- http://ajp.psychiatryonline.org/cgi/content/short/appi.ajp.2009.08050757v2?rss=1 . it deals with schizophrenics but gives an explanation of what neuroplasticity is, which i thought might be used to you.

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.
 
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susiemargaret replied to susiemargaret's response:
hello again, N and mary --

here is the citation for the full article (my previous post had only the abstract) -- http://ajp.psychiatryonline.org/cgi/reprint/appi.ajp.2009.08050757v2 .

-- susie margaret
what good is gold, or silver too, if your heart's not good and true -- hank williams, sr.


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