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How Much Time Do You Spend Each Day Thinking About or Dealing with PD?


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#1 KiminJapan

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Posted 06 June 2011 - 06:40 PM

I'm thinking I devote a good amount of time to the theme, what with remembering to take medicines, noticing how they work or fail, thinking about the future, thinking about the people here. Might be hours each day. Id like to reduce that.
How much time do you give pd?

#2 CynthiaM

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Posted 06 June 2011 - 06:46 PM

Too much time. :( That might be because I have not had my diagnosis that long even though I've had the symptoms for 10 years.
Life isn't about waiting for the storm to pass......It's about learning to dance in the rain.

#3 Jenette

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Posted 06 June 2011 - 08:37 PM

I was just recently diagnosed, too - February. I spend alot of time thinking about PD since I'm still learning. However, since it will be with me for the rest of my life, I guess I'll always spend alot of time on it. It's important that we keep the right outlook and not let PD consume us with negativity. (Easy for me to say - I had a good PD day. Tomorrow may be different)

#4 Jeff S Griffith

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Posted 06 June 2011 - 09:17 PM

I spend more time thinking about it then not. I can be heard saying "DAMN PD!!!" about 20 times a day, Like when the book in my hands is hard to read with the words shaking, or I have dropped my razor or toothbrush for the 5th time, or reset the video game for the hundredth, or have lost my balance in the shower again.
Kinda hard not to think about it even when the meds are at their best
There's no point in taking life too seriously, You will never make it out alive so live and love while you still can.

#5 jb49

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Posted 06 June 2011 - 10:28 PM

I'm thinking I devote a good amount of time to the theme, what with remembering to take medicines, noticing how they work or fail, thinking about the future, thinking about the people here. Might be hours each day. Id like to reduce that.
How much time do you give pd?

Well Kim, I don't give any time to PD, the SOB steals it from me. I do give time, cause I like to, to this forum. It's easy for me to sit down and read and post for a couple hours at a time. PD is like a toothache maybe, hard to ignore. And like Jeff, when the hands don't work right, or I trip or I'm standing there waiting for my Parky Paw to open a doorknob, its hard not to think of it. So I give 2 hours to the forum, 3 hours of Parky Delays, 2 hours of occupying my mind needlessly and I guess it is too much time spent on PD.
jb

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Don't be hard on yourself, try your best and be strong!

#6 Guest_TexasT_*

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Posted 07 June 2011 - 03:59 AM

As little as possible. I spend more time trying to keep my brain occupied so I won't think of it.

T

#7 Delta

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Posted 07 June 2011 - 02:46 PM

I'm giving more time than I would like.

In 1998, I was diagnosed with another chronic, progressive disease. I was consumed. I surfed the net for hours on end, read 3 books, participaeted in clinical trials, started and ran a support group. In one of the clinical trials I particpated in there was a 90% cure rate. All of the treatments failed for me. On my birthday in 2004, I realized I had lost the last 6 years of my life. I got a new haircut, lost 35 pounds and bought new clothes. AND I quit being a slave to my disease.

I've had PD sympotms since 2005 and was diagnosed finally in Feb 2011. I have not read any PD books, I have not read any web site that tells me what my future may hold. I have not been to a support group. I just live every day like normal for me.

I do see a MDS and do exactly what he tells me. I do read information that tells me how to take my medicine and what medicine to take. I do read this forum because I get helpful, but not scary or negative information. Sometimes I wonder if the medicines I took in the clinical trials caused my PD, but I try not to think that way because it's not going to change my current situation.

I can't afford to lose any more time. I just try to live every day like normal.

#8 Brina

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Posted 14 June 2011 - 10:39 PM

Too often.

My dad has PD, and I can't stop thinking about it. I'm always worried about him and his future, and what will happen to him and my family after he can't work anymore. The worst part is that my dad realizes how much it gets me down, and then he feels sad because its as if he feels he has put such an emotional burden on me. I really would rather have what normal time I have with him not be full of sadness.....

#9 netgypsy

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Posted 15 June 2011 - 12:22 AM

Brina I posted a long reply to you. Your dad does NOT want or need your sympathy. But he can use your support and help reading great tips on here on how he can stay normal for many years.

For me, if my meds work, I don't think of it at all. Too much other stuff to do. My SO takes care of the meds for me so I don't think about them and I only take PD meds every six hours anyway so that's in the morning, after lunch and at night with a regular thrown in after supper. So not much at all BUT if I crash it's a major pain and we fix some strong coffee to get the stomach to empty cause crashes are the pits! I normally don't shake, have trouble swallowing or any of the usual problems when the meds work but of course when they don't, I have them all. PITIFUL for sure. I know I don't spend as much time on PD meds as my friend does on his blood sugar regulation because he is diabetic.

#10 gazelle66

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Posted 27 June 2011 - 11:15 AM

Hello,
I'm rather late to the party on this one, but I think it an important issue. When I was first diagnosed, I was extremely positive....I improved my diet, I exercised regularly, I was careful not to read anything too negative or read about progression as I felt everyone is different and I felt that I had as good a chance as any of being someone for whom PD was just a bit of a nuisance at times.

Wih hindsight, maybe there was a bit of denial going on, but then I went too far the other way. I started reading all about PD...all the time. I started thinking about myself as a PWP (something I had always tried not to do). At this time I was using the internet a lot....I do think you have to look out for warning signs that you are just on the internet TOO MUCH....for me this was a compulsion brought on by the drug Requip and I believe not uncommon. And when you have a compulsion like this, you feel the need to solve everyones problems, to answer every post, to try and help. It is very time consuming and quite destructive to 'real life' friendships and relationships. And causes anxiety. I now don't log onto the computer every day and purposely try and occupy myself in other ways.

So, I agree very much with Delta though I have not managed to get there yet. Who's to say how bad you will get (or not). And now my head is clearing a bit again, I can see the benefits of being positive. If I think about today, I have hardly thought about PD at all. The time I think about it most is when my meds are wearing off and my foot begins to drag or I can't write properly, or my mood dips quite low. And the other time I think about it particularly is when I think of the future. I am toying with the idea of changing careers and I think to myself 'is there any point?....will I be able to do it and for how long?'.....but the truth is, i've not got a lot to lose.....if I can do something new and exciting only for a couple of years, surely that is better than none at all. And if I end up unable to move? Well, that would have happened anyway. And maybe by then there will be a cure, or better drugs. Who knows?

The best advise I ever read was not to assume everything is down to PD. I am at my most normal when I look at each thing 'wrong with me' in isolation, and try and find solutions for that individual problem. Whether it be exercise, diet, drugs etc. It makes the overall effects of PD reduce.

Sorry, I think i've wandered a bit here....I haven't posted much for a while so my brain has been let loose and it is treating this like a day out at the seaside! Anyway, that's my two-penneth...... :smile:

#11 PBar

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Posted 27 June 2011 - 12:18 PM

I would say for myself. Not enough. However, by not enough, I mean I don't spend enough time doing the things I could to deal with the disease better (sleep and exercise). I try to get motivated to do it, and my wife is pretty good at encouraging (not nagging) me to do it. But I just need to get down and do it.

I also need to start being more selfish.




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