It is not easy to talk of the negative when it goes against one's background and upbringing and one's whole being to do so. Talking about it makes me feel worse, not better. I know what is breaking down and what I have had to give up, but if I talk about it, it comes too close. Where I grew up one does not talk outright about pain, but everyone in West Jutland would know that if I say that PD is'nt all layer cake and whipped cream, what I'm really saying is that it hurts like h*** and I'm not well at all.

However, at the moment I'm feeling really well - no euphemism is needed for that.

birte

... is that "it's a cultural thing" about keeping apearances as if all was well, no matter if they aren't, and only if they really have you in a bind, a "beating around the bush" reply is enough to alert others that you are having a really difficult time? Interesting. I guess Americans are more apt to just come out and say what's bugging them, whereas, Europeans are more staid.

"People are like stained glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is a light from within."

~ Elisabeth Kubler-Ross

That is exactly how it is, cs.
Instead of saying, "I'm having a really rotten time." We would say, "It's no dance on roses."
But it's only in the colder North that we're so buttoned down. The Southern Europeans are not as stiff as us Scandinavians.
One restraint I have managed to overcome is the reluctance to praise. I can blurt out heaps of superlatives without hesitation. "Not too bad" is just not enough.

"People are like stained glass windows. They sparkle and shine when the sun is out, but when the darkness sets in, their true beauty is revealed only if there is UNDERSTANDING AND COMPASSION from within."

I wanted to respond to this thread yesterday but it was locked closed. I’m glad to see it back open.
So what do I do all day? That depends on how the meds are working. My normal schedule requires me to be up and trying to get functional by 7:00am. I still have a daughter in high school. Luckily she is pretty self-sufficient these days. After she has left for school I hit the computer to check out the forums that I belong to, answer email, and finish trying to get medications into my body. Do my exercises. I rarely get out of the house before 10:00am any more.
Once I’m going for the day I head for my wood shop. Most of you have seen pictures of the bowls, vases, and pens that I make. How well the meds are working determines whether or not I operate the saws and lathe. There is always something to get done like sanding or putting the finish on a piece. I’ll usually work at it till about 3:00pm. If I don’t feel like working, I say heck with it and go fishing or do something else I enjoy.
Other than woodworking I am the support group leader for our local support group. I’ve also joined the speaking circuit. I go to support groups through out Ohio and speak about having early on set PD and my struggles with it. The evening hours are reserved for family time.
There are the days when dyskinesia, freezing, and basically feeling like crap are a problem. What else can you do except tough them out? As Ron Hutton said, “I intend to live and enjoy my retirement as if I did not suffer PD. I take pride in what I can achieve, and refuse to wallow in self pity. I take each day as it comes, determined to enjoy it. I want to be the best role model I can for my children, in case they ever get PD, after I have gone, heaven forbid. I believe a positive outlook does diminish the suffering”.

Have a good day,

GregD

As proof, I would like to submit this letter written by an Aunt whose niece has been in the hospital for over a month and chances of survival of small.

TUESDAY, SEPTEMBER 18, 2007 11:51 AM, CDT
Hi Everyone,


I went to see Arrian last night and she was very well. She had rehab all day and was more awake and lively then I had seen her in a while. It was pretty difficult to visit with her because she had a wound dressing change, then was eating dinner, and then she was off to the art room.

On a negative note, we have come to find out that she has VRE which is Vanocomycin-resistant Enterococci. I don’t think I can even explain it in my own words, but from what I have heard from nurses that I work with, is that it is not a good thing to have. When I more fully understand it, I can give you more information but in the meantime, if you are interested, here is a website that gives more information: http://www.cdc.gov/ncidod/dhqp/ar_vre.html

It was extremely difficult for me to hear about the above and to see her wound. It was the first time I had seen it and to see them cleaning and repacking it made it all the more difficult. Just as a reminder, she had a surgery to explore her intestinal area a few weeks after she first went into the hospital. They did not find anything wrong at that point so now she is left with a very large wound. The stitches did not dissolve, so she was not healing as expected. The result was as I mentioned before, a very large open wound. The wound covers a majority of her stomach and I would say is about one inch deep or more. As I watched them redress the wound I sat there and thought to myself, once again, how amazing she is. She hardly winced as they did this procedure which looked like it could be quite painful. As a matter of fact she was watching a show on Disney and even laughed a few times as she held one of the nurse's hands. The nurse said that the first time she changed the dressing, Arrian was telling her what she needed to do next since she is so used to getting it done so often. That’s our smart little girl. Today they are going to be placing a wound vac on her again. This will not be so much painful as it will be annoying because once again she will have a machine attached to her to get in the way of her mobility a little bit with the added annoyance of something that beeps every so often. But of course...she will push through it just like everything else.

I think I've said this before, but seeing her like that and going through what she goes through with such persistence and ambition to get better, makes me realize that I, being a fairly healthy adult with full use of my arms and legs, need to make more of an effort to be healthier and get in shape because I have a choice to and she does not. I tend to lose sight of things some days and sometimes even feel sorry for myself if I am feeling overweight, not energized because I am stressed with work or school, or just down because things aren't going exactly my way. Then I have to remember her and her state of being and how she has very limited control to getting better and overcoming all of the disease, infection, and heartache of not being a normal child. And this, as unfortunate as the situation is, reminds me that as long as I have the ability to make positive choices in my life, then I cannot complain about things that are not always going my way. My mom has always told me that whenever I am feeling down about something that I have the ability to make changes. I always believed my mom , but it didn’t come full circle until now when I see little Arrian, trying with all of her might to work on getting better, trying to skip past all the obstacles in her way and using her ability to the best that she can to make changes to get better. With all that being said….I am giving up the saying “think of how your life could be worse” and changing it to “think about how your life could be better if you use the abilities that god has given you to the greatest extent.” I know that’s what Arrian is doing. She’s not feeling sorry for herself. She’s pushing through and using what god gave her to her greatest extent.

I love you Arrian for all that you are and all that you have taught me."


Please stop posting posts to cause others anxiety. Young onset is affected by stress. Some have said that maybe people from different countries respond to adverse events differently. Britain responded to Hitler's attacks with civility and determination. I find these admirable traits. America held to an isolationist policy and didn't do anything to stop Hitler until Pearl Harbor was hit and we were directly affected. Once Americans became involved, they were as commited to winning the war as England, but prior to that were too proud and greedy with their resources to share them with others.

America was built by immigrants who wished to escape tyranny. They said they wanted to be a "Free" nation, however they did not want to pay the price to remain free. With "Freedom" comes responsibility. Responsibility to the world, not only the United States. The young American girl above, has an aunt who is willing to learn by how she is fighting for her life with innocent love and faith. Arrian reassures the doctors that she understands they are trying to help by working as a team member even though the chances are very strong she will die. As long as she has life, she has hope.

When did we begin teaching our children that we were entitled to a long, healthy life? Where is American honesty?

Sincerely,
Vicky

Everything from stoic to incomprehensible. I assume that I am the smiling guy. It's only because there is no icon for a glint of madness in the eye

But seriously- Depression and apathy are an incredibly dangerous part of PD. If some of us are able to escape that and present a positive face then the group benefits. Attitude really does matter and those of us with the ability to keep an optimistic one owe it to ourselves and the rest of the gang to do so.

Newbies need to have both extremes presented, as well. The first "support" groups that I wandered into were about as nourishing as a funeral home. Old folks waiting for death. Well, I intend to live as long as I can and I will fight the ***** every step of the way. And, god willing, I'll do it with a smile on my lips. Most of the time.

since i started selegline and got off of cymbalta, i have been having alot more energy and up time so i can fill this post with more stuff.

usually, i wake up around 5 am.. immediatly head to the coffee pot. after a cup or 2, i go to the computer and check on parkiejam. not much happening in there lately, but in the planning there will be a new grown up site with emphasis being on the artistic side of pd. for now, its the chatroom only.. anyways.... i check email, play a game or 2.. then the rest of the day i claim for whatever direction my mind feels like doing.

i am a poet (even have a book out) http://thewritingforum.net/html/laur..._new_pg_1.html

i am a musician..
http://www.soundclick.com/bands/page...?bandID=134275

graphic artist..
http://www.wetcanvas.com/forums/showthread.php?t=441477

and i love photography, gardening, cooking, antiques, digging in old dumps from the 1800s for bottles, making victorian style purses, and listening to music..

when i am down, i try to keep my mind in another realm. i like books on cd, listening to music, i journal when i can, watch mad tv, or just sleep.

my belief is that i dwell too much on pd, it becomes too much a part of me. i am much more than this stupid disease, so my mindset is important to go through the rough times.

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