not like you to attack someone Tena!!
I did not get "arrogance" at all from Ron's post. He is simply a "mind over matter" type of person. My hats off to him. Maybe we all could use a good "kick in the pants"!!!

I know for a fact that his PD is much worse than he lets on. He just is not a "pity pooler" who let his PD beat him down. You cannot give in to your PD!! Ron never does!!

CHarlie

if you have a family that supports you - you are blessed
and if you have PD, the kind the young onset have, you have an all together
different disease, I have seen the difference between -
the after 60 PD and the in the prime of your life young onset kind
I believe the YOPD -is another kind of PD!
and there is much more stress involved!

and I know it is rough for the young ones like my friend - who just died after 8 years of this horribly destuctive disease - the difference they need to acknowledge the premise,
and not be arrogant in your illness - so that you make this disease look like a polished apple -yes there are different kinds and different op/eds about
Mike Fox - pretending he had PD for attention by that aszhol called "RUSH LIMBAUGH - did you feel for him when he was have uncontrolled dyskenesia,
my friend who died - couldn't even set in a chair!
and they pulled film from the Champion film because that was all they had
to compare the two -to prove Mike Fox was not faking...

the subject at hand is not being followed -the original question was and is
basically a very honest, from the heart question
What do you do when you feel depressed and or angry to have some quality
life, while we that are afflicted with a terrible hard onset,
what can we do to live -

I am stating this because many of the YOPD patients are not all "peachy"
and we have not all been treated respectfully!
we wont all live to be 70, we are not all men, who identify a quality life
with what they do for a living -

and all I have seen in my life - has not been a fricken cake walk...
try to be polite to the original posters question -that's all...

as I do have on occassion when hell is beating you up your psyche
"Dystonia -it is the most painful thing I have ever felt, worse than child birth!
when you brain tells your body to rip you in half!

That is not arrogance, it is enthusiasm. Ron has enviable energy and admirable endurance. Each one of us is seized by our very own, special, individual, tailor made to us PD. We all know that PD attacks with different strengths and at different speeds. We all suffer, all of us, but not in equal measure. Most of us are not able to do much any longer, few can handle a full schedule like Ron's. It makes me tired to imagine such a busy life, I could never do half so much, but it doesn't make me angry that Ron can do all that. Ron is not bragging, he's just telling the truth.

birte

Censored it myself BTW.
Ron is one of the Old Lions here and deserves better. A year and half ago he most graciously invited me to be his guest for a badly needed vacation. He picked me up at the London airport some two hours from his home. I had no trouble identifying him - he was the one writhing with the worst dyskinesias I have ever seen. Yet he and his wife Margaret had braved the drive and crowds to pick up two strangers to share their home for entirely too long a stay.

He has spent many hours researching PD and seeking to find a solution for us all. And he continues to fight. As for falling etc. you might remember his dive through his greenhouse a few weeks back that left him with a spearpoint in his shoulder.

And why doesn't anyone ask the obvious question - "Is he doing something that is making the difference?" CDP Choline? Curcumin? It certainly isn't saccharine.

.... .. .. .. .. .. .. .. .. .. .. .. .. ..

Hi folks,

Just a gentle reminder that we shouldn't attack one another personally. That's not what this place is about.

If you feel like you're getting hot under the collar about something you read here, please, log-off, take a breather, and come back later and reply. I didn't read anything into the first few replies here that I took to mean something other than what was said...

Different people are at different places with the disease, have different personalities and physical/genetic makeups, and so will answer differently. That's one of the things we value about coming to a place like this, is finding not only others like ourselves, but also those who have had a different experience to share.

Thanks for your understanding and moving forward with respect to one another on this thread.

John

I still work, but part time and seasonal..That is what keeps me active, and gives me something to wake up for..When Im not out in the boat I work in my garage building traps, fixing traps, making something for the boat, or building some sort of a contraption to catch this or that..with and without some success..It makes for an adventure..At this point, fishing has become more of a hobby than a job..Ive been able to do different things that have been rolling around in my head for years, but never had the time to do it before, cuz I was just too busy..I like to take a ride down to the dock and shoot the **** with the guys on some mornings..Theres a cast of characters down there I'll tell ya!....Never a dull moment

When I get up in the morning, I take my meds at 9:00, no matter what time I get up, unless Im going out in the boat, then I need to take my morning meds before I leave..I always end up taking more meds when I work..Since I started the Sinamet CR I only need to take meds twice a day now, and I finally feels like the pd honeymoon has started..It sure does take a long time to get the meds right

When Im not out fishing, which consists of 7 months per year, I spend my time with different projects some related to fishing, others not..I like to go online and see whats going on in the pd world, and there are 4 other message boards that I post on, some are health boards and some are political boards..I have a photoshop program on my computer, and I enjoy fiddling around with that, and sometimes I create something that makes me laugh untill my sides hurt..I post some of it on the political message boards I belong too, and some people think its funny too, and some people come unglued.. ..I cant draw, and I cant paint, never could..so its a way to express myself as well as an outlet to have a few laughs, and kill some time

I dont watch alot of TV, but there are some show that I dont miss if I can help it..Deadliest catch is one of my favorites..No surprise there....and Lobster Wars..I miss the Sopranos, but Brotherhood which is on Showtime now is a great replacement for the Sopranos, and its filmed here in Rhode Island, with a Rhode Island theme..I met Jason Issacs, who plays Micheal Caffee on the show through mutual friends..Basically I like alot of the shows on the Discovery Channel, the History Channel, the Biograpy Channel, the National Geographic Channel, and A&E..Im a Real Time with Bill Maher fan, and I also like Curb Your Enthusiasm

What helps me tremendously is AA..I go to a few meetings a week, and over the almost 18 years Ive been sober, Ive made alot of friends, and alot of us are like extended family..AA is basically how Ive been able to on a daily basis deal with pd..(and Neuro Talk as well)..At meetings we talk about whats going on in our lives, and how we deal with it, and the solutions we have found to our problems..We also share our joys and good times as well..We get to help folks out who are either having difficulty staying sober, or having other kinds of life problems..When I am helping other people it takes the focus off of my troubles..Its nice to get out of the house at night to be with good people..There are people from all walks of life there, and strangely, our paths probably would never had crossed had it not have been for our common problem

Everyday around 3-4:00 I have to take a nap..I usually lay down on the couch, and turn on the TV and sleep for about an hour or so..My calico cat takes a nap with me..I dont have a wife, so I have to do everything around the house, which I dont mind..Ive come accustomed to the divorced and single life, and since I now have pd, and live on a low income, I plan on keeping it that way..I cant afford a wife anymore, and I just dont want to put myself in a position of vulnerability as far as relationships go, because I feel like the marked card in the deck now, and some people treat me as though I am..Not everyone can deal with someone elses sickness, and I dont feel like rolling the dice, and thats ok..I never feel lonley anymore, like I used to feel, and besides, my cats are good company

I wake up early - anywhere from 5:00 AM onward, stumble to the bathroom and on to the kitchen for the first meds. I then spend an hour wrestling with the keyboard and generally feeling miserable while I wait for them to come on. This is a delicate time for me since stress or anything else that disrupts the system at this stage can ruin the whole day. Luckily the house usually is asleep at this time.

About the time I start feeling human, my wife wakes up. Because of my snoring and general PD, she sleeps upstairs and the three dogs guard her. The two cats and I know when the crew is waking and we have lots of time to get out of the way as the three (ranging from 15 pounds to 75 pounds) come tearing down the stairs in a snarling cloud of dust with my wife, W, in tow to turn them out into the sideyard.

With a little luck I am beginning to achieve mental function by now because my wife is definitely a morning person and needs to talk while fixing her tea and my coffee. I try not to let her see how painful that is. She worries too much already. Soon, she and the three bozos retreat back upstairs for tea and I enjoy the coffee while I finish coming to life, check in at NT, read the news, and do a little email.

By about 9:00 I am usually ready to head out the door. I don't have a real job. I was a land surveyor for 40 years but had to give up and sell the business four years ago. Wasn't easy as I was the third generation owner. But the heat, cold, rugged terrain, and demands of running a business dictated the terms.

So now I am a developer. Or at least I have been. The real estate mess has made me realize that what I have been doing has degenerated into attempting to sell existing investments. I no longer have the ability to juggle deadlines or stand in front of regulatory boards. And with sales being dead for most of this year, I had to consider getting a day job. Came face to face with the fact that I could not hold down a job and at some point in the last few years I had become disabled.

So like Steve with a storm coming, I have been preparing as best I could. Trying to sell property just to eliminate debt while shifting what little I have built up into something that will produce rent and that my wife can manage. So, I spend the morning going around my hometown hustling and trying to bring my little plane in for a soft landing that I can walk away from.

In practical terms, that means breakfast at a local watering hole where I have gone for decades and where they know me and my PD. I meet people there and use it as a defacto office. Then I make stops at the banks and government offices and visit project sites until about mid-day when I feel the first tell-tale signs that life is drawing to a close again. It's hard to do much with a four hour day.

So, if the weather is good I may go fishing at a place I know where I can be as bad off as the day requires. And where my wife doesn't have to face PD for a little while. But usually I head home and continue my research or do some paperwork.

I do have a room full of art supplies and fly tying paraphanalia and a hundred projects waiting. My hope is to shed the debt, get my trailer park on track, and then file for disability. Then I move into a new phase of life of some sort. Write that book. Paint that masterpiece.

CTenaLouise,
I am not rising to the bait on this one, I don't want a fight.
I just want to say you know what is wrong with me, I have PD like the rest of you. I have dreadful dyskinesia. Unmedicated, I can't walk. I fall, as Rick has testified, I have had a dislocated shoulder for a year now after a fall. The bone was coming through the top of my shoulder, and the docs can't help me. I recently fell through my greenhouse, and have rolls of flesh scars. CS, you ask do I bleed, you should have seen me that day. At 70, with 16 years of PD, and many falls, I am a physical wreck. I have problems with my kneecaps, my fingers, my shoulders, (I can't raise my left arm above my shoulder).
All I am saying is 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.
Thanks to those of you who understand, and supported what I believe. I always say an advantage of having PD is you meet the nicest people, you would otherwise not have met.
Ron

I have never had any bones to grind with you. I didn't think that life was a bed of roses for you or anyone else with PD, but the way you put it, it sounded as if you had nothing to complain about and everything was OK. So how do you reconcile putting everything that IS OK in your life up WITHOUT mentioning your limitations. Excuse me if it just didn't sit right with me. I took it as if it were a "mocking" tone to those of us who feel that we have to tell others on ths board what PD has done to us that we can't seem to cope well with. And of course, the other guy with a frickin permanent smile etched on his face, doesn't often come clean either and tell us what God awful shape he's in (sorry old boy , but i just had to say it). It's just "not fair" that people say only the great things that are happening in their lives and leave the bad things out. I think that it gives readers like my wife for instance, a sense that somehow things aren't as bad as we say they are for us and that we are, to put it in a way recently said of me "are you funnin' with me?"
That's what i took offense to. If you have mixed your last post with your first post, it would have beem immedately clear that you ARE in bad shape, but somehow, you've found ways to cope with it, and that it's not everyone who will develop ways to cope with are own personal hell on Earth, because maybe , just maybe, it's NOT all a matter of attitude. LIke Tena said, sometimes dyskinesia is so bad you feel like ripping your body in two. Just as each coin has two sides we are all like Janus from the moment we're born till the moment we die. NOt many of us here are "dramatic actors" and weep and moan in a continuous pity party. Telling things as they really are is not the same as telling things with a dramatic bent. I don't like the attitude that we are able to suffer in silence, because , up to a certain point, like torture, we will all confess to anything when it gets bad enough (as the Spanish Inquisitors and the Salem witch hunters, and many, many human devils have proven throughout the ages). Whether being roasted over a spit, boiled alive or any other torture, we all have our own unique "breaking point". And when it becomes unbearable, there is NO talking yourself out of it.
Your attitude , Ron, is admirable; your ability to take the pain without screaming on this board is too. But i'm glad that you did come back and tell us that things are not entirely wonderful and that PD is not a cake walk, when one says, or implies that it is, only gives a false impression to some of the most important people in some of our lives, and WE suffer even more because of it. cs