For those who care for someone with Parkinson's disease
[Home] [Forum] [Help] [Search] [Register] [Login] [Donate]
You are not logged in


Topic a weary late night muse Go to previous topic Go to next topic Go to higher level

By LOHENGR1N On 2011.12.09 00:28
I was asked recently by a fellow Parkinson's Disease Patient, how and why do you keep doing it? The same questions over and over, some who post and don't listen to your answers or view just discard what you write if it doesn't suit their feelings or isn't the answer they are looking for?

In My answer to Him I said because I still can, because if I can put my voice in answer and make life a bit better for Them and their caregiver/partner it's worth everything else that goes with it. This seemed to satisfy Him. But it has caused me to reflect over these long years of reaching out trying to make a difference, trying to better our lives. I've said some of this before over time and in many posts. I can't cure Parkinson's Disease, no one can. I won't say it'll get better, in the long run it won't. I can explain the disease, medication and progression. I can give voice to those who've lost the ability to speak. I can give hints and tips that might make things smoother for a time. I can't keep doing this alone. I need help, from caregivers and patients. Help comes and goes I still for a time remain. You lurking Patients out there I need you. One thing I've found is everyone has something to contribute in fighting this disease. You might think you don't or aren't knowledgeable enough to post? Guess what You are. Who knows the effects of the disease on You better than You? I can't tell you exactly how John Doe will feel after trying sinemet anymore than you can but I can give a pretty good guess just as you can. We need each other, the newly diagnosed need your wisdom learned so far in your journey in the disease. Others who can't talk need your voice. If you can type post, even if it takes awhile to type it's worth it to you and to many others. If you can talk and can get someone to type for you do it please. I'm not going to lie to anyone here, it does wear on me trying to keep up. 26 years is a long fight and I'm slowing down. I'm not throwing in the towel by any means but I'm no superman either. When this disease takes my voice and typing? Then what? I've been with this forum almost from the get go (less a couple years of stepping away burnout). If you'd step up then why not step up now, I'd rest easier. It is good for you it will help you to help others to pay it forward. If not will those seeking help be met with silence from We the Parkinson's Patients? Tomorrow I will resume raging against the dying of the light, tomorrow I will not go gently into that good night! Tonight I was watching a funding drive on local pbs and it prompted this musing. Paul Simmon performed the following solo with acoustic guitar (you could have heard a pin drop in the auditorium) the words and music echoed. Tonight as I go try to rest my weary body I'll end with it....

The Sound Of Silence
P. Simon, 1964
Hello darkness, my old friend
I've come to talk with you again
Because a vision softly creeping
Left its seeds while I was sleeping
And the vision that was planted in my brain
Still remains
Within the sound of silence

In restless dreams I walked alone
Narrow streets of cobblestone
'Neath the halo of a street lamp
I turn my collar to the cold and damp
When my eyes were stabbed by the flash of a neon light
That split the night
And touched the sound of silence

And in the naked light I saw
Ten thousand people maybe more
People talking without speaking
People hearing without listening
People writing songs that voices never shared
No one dared
Disturb the sound of silence

........ said I, "you do not know
Silence like a cancer grows
Hear my words that I might teach you
Take my arms that I might reach you"
But my words like silent raindrops fell
And echoed in the wells of silence ..................

By gap2010 On 2011.12.11 21:33
I do so appreciate your posts, your insight, and your help of thinking outside of the box and looking at what can be rather than what can't. Thank you!

By Elly On 2011.12.11 22:49
I come here every day and learn. I appreciate all of your posts so very much.


© 2003-2017 MyParkinsons.org · Privacy Policy & Terms of Use
Published by jAess Media. This website and Forum is sponsorsed by people like you