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noah

inspiration

13 posts in this topic

Let's be real… PD is different.

 

Couldn't agree more. PD is much more than a movement disorder. a disabled body is nothing compared to the disabled will of PwP. Believe it or not we CAN make our bodies move. what we truly lack is the WILL to do that. and we are not to blame for that. simple dopamine replacement is a drop in the ocean of the deranged parkinsonian brain.

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Let's be real… PD is different.

 

It is still very inspirational....

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Great video! I always love stories of people who are told what they can't do and then they find the will to do it anyway. Having worked in substance abuse treatment for the last 30 years, I have met plenty of people who had lost hope but with some help began to believe in themselves again and turned their lives around,

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I do yoga with my wii. Not as good as a personal trainer, but I learn at my own speed. Since my "official dx" back in 2001 I have been a staunch advocate of exercise in any form! From bicycle riding to walking, to yoga. It is so beneficial to get up off of your duff and being proactive with your own healthcare. Living with PD consists of more than laying around and feeling sorry for yourself and taking pills all day. The effects of the pills don't last very long, depending on the individual, whereas the lingering effects of physical exercise can last for days, once again depending on the individual. Believe me, exercise DORS work in helping to control PD. I've been living, working, and participating in sports all of my life. I think that fact, and the fact that I kept it up after my symptoms became visible to the world in 1976, got me to this point in my life, 36 years later!

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Believe it or not we CAN make our bodies move. what we truly lack is the WILL to do that.

 

I gather you've never been frozen before. When the day arrives that you lapse into that state you'll understand better. You can will nothing more complicated than blinks and limited eyeball movement; not the ability to focus one eye, not the ability to train both of them on an object to gauge depth, certainly not reading across a line of print in a newspaper. I never lost an ability to move my tongue either but that was about it. Blink and move my tongue. That was about it in terms of willed movement when frozen. I suppose they go, too, at end stage.

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Roger,

 

i was simply referring to the intriguing pathophysiology of parkinson's disease. a disease described as "paralysis of the will". this was not MY term, not MY interpretation. this is elegantly described in several research articles, including the following research paper entitled : "Parkinson's disease : fighting the will" ?

 

http://www.jneurosci.org/content/27/44/11777

 

The authors conclude that : "the movement deficits characteristic of Parkinson's disease reflect not a purely motor impairment, but rather an aberrant implicit decision-making process. Indeed, parkinsonism has been described previously as a “paralysis of the will”; it is not that PD patients cannot move, it is that their dopamine circuitry does not “want” to"

 

believe, me, i know, and completely understand how difficult, and with time, virtually IMPOSSIBLE, it is for a patient with parkinson's to move when dopamine is depleted. i may not have frozen yet, but i'm 37 years old, and i can't walk fast enough to break a sweat, exercise like a normal homo sapiens, or go for a simple walk without feeling totally exchausted.

 

if you noticed, i agreed with luthersfaith that the-otherwise very inspirational video posted by our friend noah/thanks noah for posting this! -does not reflect the particular challenges faced by PwP.PD is different from other neurological or joint/muscular diseases. it is a severe degenerative brain disease, involving several neurotransmitters, affecting both motor and non-motor functions in a very complex manner. Hence, it's MUCH MORE difficult for a patient with PwP to move, exercise, etc. He/she must fight not only his/her rigid and trembling muscles but also a paralyzed will plus he/she must find a way to circumvent several defective brain circuits ! Not so easy...THAT was my point and it's the SAME with yours.

 

I wish we could just say "I will work my @ss off in the gym, and this will go away" but this approach doesn't always work it's magic. Don't get me wrong, exercise helps, tremendously, and in many forms, but NOT everyone with PD can exercise hard enough, and NOT everyone experiences the same benefits. Some patients are lucky enough to have a slowly progressive form of the disease, allowing them to exercise for many years into their disease and be functional with minimal medication/side effects. others progress quickly, do not tolerate meds, or suffer from severe dyskinesias, on/off fluctuations which limit their ability to do as much as they want to.

 

As you see i understand your challenges. i hope you understand me too.

 

PS : i know my freezing days will eventually come. your comment was a little harsh.

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I should have made clear that deep freezes like those described would happen when I wasn't taking enough Sinemet late in the afternoons. So in that sense had I 'willed" myself to take meds on time much of the worst might have been spared me. With medication during this pre-op period I was capable of and did climb ladders to clean gutters. Since DBS I've cut back from 15 to 18 25/100 tablets to about two or three in a 24 hour period and experienced no freezing at all. Hope I didn't alarm anyone.

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Thanks for the info, Roger. Everyone is unique when it comes to PD. My neighbor has it and is always telling me when he has a new symptom and then saying "wait until you get this". I just tell him to knock it off.

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This what Dr. Low says about the will.The purpose of the will is to accept or reject beliefs and to say yes or no to impulses.In other words the will means intention.I use my will to curb my tempers.With this parkinson I sometimes do lenghten my stride some with mixed results.Parkinson is more something that happens to you .The disease affects everyone differently some far worse than others..

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