Some random thoughts on living with PD for seventeen years:

1 When first diagnosed, patients are often told, "Don't be too troubled, PD isn't a death sentence." What you are not told, and something that takes a while to sink in, is that PD is a life sentence.

2 Every time you go to the pharmacist for a change in medication, you are told the same thing: "I'm afraid this new item is a little bit more expensive than what you've been taking."

3 As time goes by, your visits for regular check-ups amount to this: Tap your fingers ten times, tap your toes ten times and leave four hundred bucks on your way out.

4 Feeling lousy becomes so routine, it can almost be considered a positive; it's a kind of manifestation or confirmation that you are "holding the line" against condition symptoms.

5 It's only a matter of time before I'm "outed" as a menace behind the wheel. Visuo-spatial problems have lead to difficulty in driving in a straight line, a practice that tends to attract unwanted attention from law enfocement.

6 Drool me a river. It's getting tougher and tougher to appear normal in public.

7 You never have to pick up a check at a restaurant. During the time it takes to get your wallet out of your back pocket, someone in your party is certain to lose patience and pay the bill out of sheer boredom.

8 and a half. Cognitive trouble? None that I've noticed. I was looking for something the other day, found it, then couldn't remember what I needed it for. Maybe I'm confused.

9 After all this time with no health insurance, why worry? A recent bill for a shoulder dislocation came to a paltry fifteen thousand all out of pocket dollars. That's chump change, for sure.

10 The flavor of the day is apathy. For example, I used to be pretty good at keeping up with cutting edge trends in relation to PD research. Just now, I don't pay much attention. Wake me up when there's a cure.

I have just started with PD. Your post just confirmed my worst fears. I can look forward to a very long litany of issues, euphemism for ****.
I don't even think that there's real life after PD. It sure sounds like a long, slow downhill spiral.

There's a bit of a disconnect here. We all have our different ways of dealing with a chonic condition like PD. My take on PD is that getting it is a bit of a cosmic joke, something like winning the wrong lottery. And the way I deal with it is through the prism of a kind of lethargic irony that is not to all tastes.

I wouldn't take what I wrote too seriouslly. If you haven't yet found your way through to a way of coping with things, you will. The alternative, giving up, simply isn't an option.

Mouka,

Your doctor indicated you have thyroid problems. You really need to take time to get treated for these. When people show up with a variety of symptoms that are hard to explain doctors put them through a process of differential diagnosis, i.e. looking at the problems, and looking at the wide range of conditions that might cause them. In your case they have found one. It is a fairly serious issue, and will need careful treatment, in which you actively participate. So looking for a different diagnosis does not make sense at this point. Neither does putting a gloomy face onto possible PD diagnosis. While PD is not a nice condition to have it is slow moving, and there are other means of helping it than drugs. There are lots of well motivated people out there trying to create a positive ethos that will allow patients to manage their condition in a way that maximises quality of life and personal engagement with life.

All of this is more than possible. You are looking at a lifeline and saying it is not good enough and won't do for me, and implying the lifeline wont be good for others. You are also ignoring a diagnosis that will need a similar kind of attitude.

The best thing anyone ever said to me about PD was "Have a good attitude to your condition'. Said by someone on this forum who has had a good attitude to their own life and lived with PD and other health issues both gracefully and with a huge amount of spiritual generosity.

Whilst I have every sympathy for PD sufferers (my husband is 5 years into his diagnosis), I don't think that this helps. Don't get me wrong - I do appreciate the need to vent and tell it as it is, but surely it's not all doom and gloom - or am I being naive here?

Sorry - wrote that before seeing your posting Lindy, so thank you for redressing the balance a little - much appreciated by a negative thinker like me.

Thanks, I'd like to know what you think.

everyone has the right to vent or try to stir up a hornets nest here. does it really matter in the big picture? i don't think so.
i figure that if someone is venting or just being a broken record and repeating themselves, nothing i post is going to make a difference to them so i'm not going to put a lot of effort in responding. this board isn't the only source of info about pd, i'm not worried that someone will make major decisions only on what is posted on this board.

i'll gladly respond if someone asks a reasonable specific question, we all have a lot of useful experiences worth sharing.

in the u.s., with it's terrible social safety net, many people without pd lead miserable lives.

It's tough living in a world where folks don't understand irony.

mouka..Don't let other peoples experiences get you down..I have had pd for 11 years..I was a commercial fisherman, and now I am a part time commercial fisherman now..I get out 2 - 3 days a week..I am shellfishing and that is hard work

It has been my experience that my attitude towards how I manage my illness physically, emotionally, spiritually, and medically has alot to do with how my symptoms manifest themselves..Depression, stress, anger, and any negative thoughts, are the enemy

Dont get me wrong..I have days when I would love to get off the merry-go-round..But the key is not to wallow in it..Embrace it, and let it go

Exercise plays a big role in pd symptoms

I went to the WPC in 2006, and I met a man who was dx with pd in his 20's..He is a marathon runner..His name is John Ball..He has a book out..In it, he shares his experience with pd..At the time he was running the Boston Marathon every year, and finishing

http://www.team-parkinson.org/news.php?ID=3

http://www.youtube.com/watch?v=yd3RvbKEThg

Please take the time to watch this video

So I believe that there is plenty of wiggle room with pd..If I hit the couch and give up, it will be all over

When I got dx, I thought my life was over..Looking back, I wasted alot of time worrying about the future, but I guess that is part of the process