[ol'cs]

... with all those prime time PD hours after dx? Well, most of us "commoners" have to work as long as we physically can, but that usually means only on average about 5-7 years after DX, depending on how "bad" you were at DX. The "lucky" ones may get ten years before they have to pack it in.
Then what do you do?
Well, the question usually ends up not what do you WANT to do, but what CAN you do. First you have to realize that PD affects us all differently, so pay no attention to the stories you hear from others who often say "well Uncle so and so has PD, and he goes for a mile walk every day and works out at the gym too". Well that may be true and God bless Uncle so and so, but don't think that you can do the same "if i only try hard enough". Sure it's best to try to optimize what you can do, but don't get all upset if you can't live up to the expectations of others. This is what I started this thread for. I want t make it quite clear to all who read this that sometimes we are dealt a king and a four against the houses' jack and an ace. Some of us just CANT do the things that someone else even more advanced with PD can do. This is completely normal, so i just want those who don't have an idea of what PD is like to just LAY OFF you, and accept this as a TRUTH.
No , it is not to be used as an excuse to give life any less effort than your BEST, but it is to be refferere to when you become PUSHED to "do better".
When i was 4 years into this monstrosity of a disease, a neurologist told me that i "could do better than that". I could not do any better than my best efforts to work, but i felt so guilty that she was right that i damn near offed myself in the process.
Don't let this happen to you. IN doing so, i once brought myself up to nearly two grams of Dopa a day, along with adjuncts. I was so messed up from the drugs that it did much more harm than good. I think that this point is what sets us doen the long road to serious depression, a road that we could avoid, if we believe in ourselves and know our capabilities and limits and to heck with what others say.
I hope that most of you agree with what i have to say, if not, let me know why you should push yourself to the limits of your abilities and what you hope to accomplish by this. cs

[reverett123]

ol' cs knows what he is talking about. Forget pushing yourself until you just can't do it anymore. Bail out of the rat race at the first opportunity. It is part of what is killing you.

Many of us have talked on here about how stress demolishes us. Think about why that might be so. It didn't just come from nowhere. Stress was there all along, gnawing at our innards. It finally broke into the open with full blown PD. I am convinced that it is one of the primary causes of the whole thing. Cortisol is vital in acute circumstances but it is deadly in chronic ones.

Stop and go fishing now!

[paula_w]

Outstanding post cs, and Rick you are so right. I have to get out - and consider this phase as bringing in replacements for the battle...and yes no matter where you look for the source......it is a battle.

So many who don't have the facts. Now we can't remember them ...lol...just kidding.

Always one more thing you want to get done.

paula

[indigogo]

Just another voice with the same message: manage the stress! My neuropsychologist told me when I "retired" a couple of years ago that I could keep working, BUT ... it would be the ONLY thing I could do; it would take every ounce of my strength with no time left for family, friends, or chores, and that it would send me to an earlier grave. He told me it was my job to take care of myself, to optimize my health by living a lifestyle that was not stressful on body, mind, or soul - with no guilt, just knowing I was doing the right thing. His words really helped me get through the disappointment of losing my job. And better health has been my reward.

[BEMM]

Some very important points are made here by cs.
Unfair assessments by doctors, friends, family - and even strangers - can wreak havoc on PD - and on lives in general - . If you let them get to you and take more and more medicine in an attempt to be 'normal' you will begin to have offs that will get more and more debilitating and more and more frequent.

Society judges harshly because society judges flippantly, in self-protection. If they can believe that we're just being lazy and giving in to PD and not trying hard enough to function as well as we did before PD, we don't really need help and compassion.

Some of the traits so obviously shared here are a bristling personal pride, a mulish stubbornness and a burning desire to postpone and suppress the symptoms of progression for as long as possible.

But our need for tranquility makes us seem lazy, it makes us seem to give in to the illness. We are peace makers. We can't afford stress. Stress can cause days of feeling ill. I think Everett is right: Stress is what made us ill in the first place.

So disregard all contempt and be as lazy as it takes to function.

[indigogo]

BEMM - Excellent description; you summarized perfectly the tension I know that I have with society. Not only are we acutely aware of what we believe others think of us, but it is also hard to train ourselves not to be harsh with ourselves.

We are our own worst enemies!

[Jaye]

My dear friends above are all absolutely right. It's your life, and everyone who wants to decide how you live it is wrong.

My biggest stress right now comes from one of my doctors, who celebrates how well I take care of myself and then calls me obsessive, who didn't want me to take pain pills prescribed by another doctor when I had bone-grinding arthritis and a hip replacement--started to write me down as addicted--then when I got off them in 30 days said that getting off them had backfired because I did it too fast, who tells me I'm better cognitively and then gives me diet tips--DIET TIPS--like I can't understand the program I'm on. Just yesterday I realized how much pressure is on me, and I don't have an idea in the world how to handle this doctor. I'll think of something... whenever....

Thanks cs and all.

Jaye

[chasmo]

its called deep brain stimulation. It's by no means perfect, but it does offer a MAJOR upgrade in one's quality of life.

Charlie

[lou_lou]

we have to take life as it comes -
one day at a time...

[indigogo]

Charlie - DBS may be great for some PD symptoms, but I'll betcha that there's no claim that can be made that it changes the way other people treat you - although I'm quite sure it has you feeling better about yourself! DBS isn't the only answer, and it is not for everyone. I'm feeling better physically since I was dx'd almost 9 years ago; quitting work and chilling out have been beneficial. Everyone with this disease is different symptomatically. The one thing we all have in common is that it has changed our lives. Our differences again emerge in the varying way we cope and dope!

Cheers!