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Topic A world no less sublime Go to previous topic Go to next topic Go to higher level

By mylove On 2009.12.22 17:11
Just another story, in the book of stories. His is very well written and poignant. Worth reading.

http://open.salon.com/blog/steve_blevins/2009/04/01/a_world_no_less_sublime

By Pick On 2009.12.23 19:40
More PD tennis gogo MJ Fox. Yay.....

This is not the "I Happen to Know of Someone Who Has Early Staged Parkinson's" board. As you can see, the banner at the top of this page says "CAREGIVER Information." If someone with PD has a caregiver they are WAY beyond what this Blevins guy can even imagine. God bless him, but he has no idea about us.

My dad is in constant pain and could give a rat's buttocks about Tennyson. Please stop demanding that we be hopeful. Maybe that is not your intention but that is totally what it feels like. At last I can sympathize with atheists complaining about us Christians trying to convert them. Please stop demanding that we be like you. There is more to life than appreciating Tennyson. Peace. Please stop, please. When your PWP is in constant pain and there is nothing you can do you will understand.

By mylove On 2009.12.23 20:58
I'm sorry that I so offend you. For the rest of you, there is no MJF in this article.

But..

Everyone started somewhere. I just found his words filled with so much grace. I'm sorry you didn't get anything out of it; as with everything here, take what works for you and leave the rest.

By shakydog On 2009.12.23 21:35
WTF????? Mylove is my caregiver. I've been diagonsed with p-d for 11 years and I am in constant pain. Tennyson is important to me. So is Byron and Douglas and Vonnegut. Humor is a great healer. Get a little. Watch some of the great comedy movies. Seen Young Frankenstien recently? How about Blazing Saddles? Or Little Big Man? Life is too short. Have fun. Enjoy what you can when you can.

Or keep your self-centered vitriol to your self.

Shaky

By shakydog On 2009.12.23 21:40
And may I compliment you on a very "christian" attitude. Didn't I see you in Spain in the 1600's. Or was it in Salem in the 1700's?

By LOHENGR1N On 2009.12.24 01:23
mylove & shakdog, Thanks for the posting. It is a nice read, I'm glad you two have found a site to lift your spirits if even only for a time each day. For that time this Disease relents its grasp and the comfort given is invaluable. I believe what the author and the two of you are sharing is yes it's the pits but do not paint the windows black, wall off the world and fester in the dark lonely places this disease try's to pull us into. We Patients know if there is a refreshing breeze blowing, go out in it, face it and enjoy the feeling of the wind on our faces!

There is so much going on with ourselves any rest bit is a balm to the soul. Open that window, enjoy. Please patients and caregivers don't close the windows, pull the drapes lest you or your loved one catch a cold from the breeze. Let some sunshine in, not only into the room but into your heart! Yes Parkinson's Disease isn't fair, life's not fair but we don't need to make it worse. We don't need to dwell upon the negative aspects. No one wins if we don't pick anyone up when they're down. Yes the author is a couple of years into this disease and yes His writing will probably change as He does with the disease but for now He's doing the best He can trying to help others. Please don't mistake this as denial it isn't. It's a wake up call. Does one toss rocks to drive away chirping birds or does one listen to them and smile? Even if we can't smile damn it you can smile inside listening. As I said this disease try's to drag one down to dark places We have to claw and fight out of those places else we wither away and become a mirror of such places, dark, lonely and bitter. Be good to each other, take care, best of luck and hang in there.

By annwood On 2009.12.24 01:33
I actually liked the article. As Al said we have to find peace in whatever we can. Christmas is hard for many of us - often hard to be "Merry" but we must. There is some good in everything we experience - even PD. We have felt, hurt, loved deeper than many others and we need each other.

Have a Merry Christmas.

By Pick On 2009.12.24 02:58
Oh so now I'm Torquemada. Thanks for that. Wow anti-christian much? And are you seriously getting into an internet pissing match with me about who is in more pain? Hey we concede! You can have all my dad's pain. There, you win, congrats!

I'm not saying I didn't like the article or get anything out of it (for the record, someone in the comments writes something along the lines of "my 105 year old grandpa with PD still plays tennis." I'm SO sick of hearing about tennis playing PD'ers!). I'm not saying the author is in denial. And even if he were, I happen to believe denial isn't always necessarily a bad thing. But I'm tired of time and time again people...here and elsewhere...telling me how I SHOULD feel. I don't tell other people or patients how to feel do I?

There have actually been comments/complaints that this board tends to be "skewed" towards those us dealing with late or end-stage PD, leaving the others out. I am trying to point out that that is the nature of the beast of a CAREGIVER forum. Statistically, most people who identify (diagnose? :D) themselves as caregivers are not dealing with loved ones in the early stages of disease.

I guess I have to go out and find an audio book copy of Ulysses for my dad now. Great...one more thing that will never get done on my "to do" list. argh. Peace.

By mylove On 2009.12.24 10:59
Just one comment: I don't post because I'm 'telling anyone how to feel'.

I am always, ALWAYS out there, searching and seeking, looking for anything that I can that will make our lives easier. Most of the time the rocks I turn over are just that: rocks. But sometimes I get a piece of an agate, maybe a bit of mica, and here and there, very seldom, I find something that turns out to be a gem. (To me) If its something I think maybe my friends have not seen, I put it up for people to see, to take or leave. Maybe to them it's the same gem I saw it as, maybe to them it's just a rock. So many things in this life are so very subjective. I figure if it's not valuable to someone, they'll just walk away.

As you know, this isn't a 'one-size-fits-all' disease. The people here aren't all 'purple 82 year old women with green hats who like dogs', for example. Some of us might not be purple, we might be pink. Some of us may be younger, some older. Some of us might be allergic to dogs, but cats work just fine. And some of us might just not wear hats at all. My point is - we have to keep aggregating the information. If we have a big enough pool, then we all can fish out of it what applies to our own situation. But don't stop people from putting things in the pool or we all suffer.

I'm not pointing any of the articles I post in anyone's general direction. I hope no one feels offended by it. If it gives me peace, or understanding, or just an aha moment, I hope you receive it in the spirit it was sent - that I hope it works for you too.

But one last thing - I come here because it's one of the only places I have to go. I have felt comfortable here (for the most part). You don't know our situation, so you don't know how much I need peace right now and a place to go where there is no drama. Please cease your personal attacks on me and my posts and just stick to the information. Your information is good when you give it. If you just don't like me that's fine, but keep it to yourself. I'm going to try to have a nice holiday, and I sincerely hope you can do the same. It sounds like you may be struggling, and I'm sorry. We are too.

By Emma On 2009.12.25 01:08
I've been debating whether or not to put in my two cents on this one. I read the article and enjoyed it, it's beautifully written and insirational. But it's clearly written by someone newly diagnosed and not yet facing the problems that many of our loved ones are. Since my husband can barely read anymore I read it to him to see what he thought. When I finished reading he said "why do I have to go to bed now, it's not dark yet." He was responding to what he could comprehend from the last paragraph (all he could remember) which talked about night and sleeping. Clearly he is beyond getting anything from an article like this. Which doesn't mean that others can't take something from it and get a measure of peace and comfort. We all have our own realities with this disease. I understand Pick's frustration with the concept of hope when many of us are at a point where hope as we used to know it is just a fond memory. I have the same frustrations, and the same impatience with tales of tennis playing PD patients. At the same time I also understand mylove and shakydog trying to find inspiration and stay positive and move forward into the future. Shakydog, trying to put myself in your place, which I can never really do, I understand your seeming anger with Pick's comments, but your response was no better. We all deal with this disease in our own way and that way changes as the disease changes. Let's try to be kind to each other.

Peace to all in the new year.

By karolinakitty On 2009.12.25 08:22
I too enjoyed the article as well as my Pdr....still able to comprehend.... If i show it or read it to him in 5 years, 10 years or even next who knows. It's where some are and where some have passed. Mine still enjoys his classical music as well as our 60's and 70's rock we grrew up on.
Pick i agree with you on the tennis thing... mine can hardly walk let alone play tennis.... he pushes himself to do that even.... i guess if that's what you were used to and you can still do it God Bless, but i never liked or cared for it. I had enough excercise working 2-3 jobs and raising three boys...didn't even have time for it.
Mylove and shakydog... we are where you are..anything to inspire and give us hope keeps us moving along.., and keeps our frustration levels to a minimum.

I guess because we are all at different levels in our walks we come to differ our frustrations here. Those who feel they can't see the light anymore, can't figure out why those of us that can ..do. We are a varied group here and with variety comes friction sometimes....

May you all have a great holiday and peace in the new year .....

By shakydog On 2009.12.26 17:55
A general apology for the strength of my earlier post. That sort of attitude is not how I was taught to interact with others. But when the response that is given to a post that was a small reminder to enjoy the small things that can brighten a dreary existance results in tears from mylove, I had to protest.

Our relationship is quite different, she chose to start a new life with a man how has a difficult time getting through the day. I chose to allow a vibrant, happy person help me on my journey. After 2 wonderful years, there is no regret on either side. I'll grant that my progression is slow and that I have some advantage in my youth. I'm only 54 and can still work. But I do have the physical symptoms. I have kept my mental skills sharp, but I will all to soon forget where I live.

Point of this missive is to ask a small consideration of the intent of the postings.

<<<< I used to sing the "I wanna be like Mike" song, thinking about being a rich successful athlete. But I got in the wrong line. See what it got me? LOL >>>>>>>>

if you don't keep laughing, you'll start crying

shaky


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