[ol'cs]

The one thing i've noticed being a (now advanced) PWP is the total inconsistency of good/bad days: lack of/full of pain, emotional/unfazed mood, controlled/uncontrolled wake/sleep patterns, mobility/akinetic movement times, and all the other "inconsistencies" that disconnect us from being considered "normal people.
IT's often been said here that we are like candles in the wind, either burning a bit lopsided from a gentle breeze, or threatened with being blown out by a strong wind.
I just can't figure this out. I seem to be on a "stable" medication regimen, one that i have selected throughout many years of trial and error, but even when life isn't throwing me a curve ball, it still whaps me on the head whenever it wants to, and i have no say in the matter. I remember being "without PD", and I could always just sleep off a bad day at work or whatever and be "fresh and ready" for the next day. AS a young man, I could haul and tie a hundred pounds of rebar every 10 minutes at a construction site, or pile a ton of wood onto "bunkstock" every 15 minutes at a sawmill. Hike up mountains, go on gruelling 3 day trips into wilderness. Weld or cut steel all day, and do many "everyday" jobs that general laborers do, without any ill effects.
Now , i can't even pick up one piece of rebar without getting a sharp pain in my back, let alone pick up one of the 24' by 10x2" rough boards that we would sling one every 10 seconds. I am totally, severely disabled.
I'm sure that all of you have similar experiences. Sometimes i think that i got PD from "burning myself out". BUt whatever, however, i got PD, all i can say is that on some days, and for some amount of time, be it minutes, or hours, I "come back " to life, and it has no rhyme nor reason, say after a dose of meds. Sometimes I just get so tired i have to go to bed, sometimes i can operate an automobile, or cook up a good meal, or even walk "normal" enough for an hour or two. IT totally throws my family off. MY wife blames me of "selective" disability, as if i'm trying to shirk responsibilities at will. THis , not being the case in any way is what makes this disease so damn frustrating. One minute you have hope that maybe you are getting a bit better, the next moment you think only a DBS will allow you a continued independent existence.
Just a bit of nonsense for you guys to chew on. Does anyone get big "up" peaks, followed by gigantic "off" peaks. How severe are they?

[Virginia Therese]

Ol'cs...just about 3 weeks ago, my pwp (Doreen) mentioned to me that for about two weeks, she had felt so well that she didn't even feel that she had PD. Then, suddenly...about 10 days ago...BOOM...she was sitting in a chair (we had visitors), and I suddenly noticed her shaking with that all-body dyskinesia that I have mentioned in some previous posts lately. She was SO dyskinetic that, without exaggeration, it reminded me of Michael J. Fox at his worst, i.e., when I've seen him in tv NOT having taken his PD medication(s) purposely to illustrate the severity of PD. Needless to say, I was shocked and extremely scared. In the 10 years plus that Doreen has had PD (tremor dominant) with only a very SLIGHT dyskinesia recently, I had never experienced this...and this was an all-body dyskinesia that lasted throughout the entire next day...and even now, that is the most dominant symptom...and, along with this, she now seems to have memory impairment...confusion...and, from what I have been able to determine, the medications that are part of her PD regimen (in addition to the Sinemet), i.e., Cogentin and Comtan, can definitely be a factor..with Comtan seemingly being responsible for aggravating PD symptoms...also listed as having dyskinesia as the first side effect in clinical studies...and, also stated in my reading: "Comtan may potentiate the dopaminergic side effect of levodopa and MAY CAUSE AND/OR EXACERBATE PREXISTING DYSKINESIAS. I view this as a very real possibility (probability) of this very sudden, full-blown "attack" of severe dyskinesia that occurred very recently..and this is certainly ONE topic that I will be discussing with Doreen's neurologist on Friday. I really only intended, here, Ol'cs to point out that...yes...one day, fine...the next, horrible...in sync with your message. I have been searching/researching all week long...including here on the forum...for information that will help me with the upcoming visit on Friday.
I am hoping...and praying...that all this is "med"-related and NOT progression that literally happened "overnight". Of course, now begins the adjustment of medication(s) period, but, I'll be "ok" with that rather than having to deal with the knowledge that it's progression. I'm sorry if I got too far off the track with your post, ol'cs...but, I just seemed to have to share this with you and everyone here.

Therese

[reverett123]

I just can't bring myself to believe that my good days/bad days are random. I may not find it, but I am convinced that there is a factor or factors the differentiate between the two states. Perhaps it would be of some help to list the things we do know.

For example, I know that if I get hit with a load of stress when first up and before the first meds kick in that I will have lost the morning and maybe the whole day. The meds just don't make it over the threshold.

I know that even when I'm at my best, that stress can blow me out of the water.

I know that if my blood sugar drops, ditto.

I know that the more "laid back" the day, the better I do.

I know that if I wake up at 3 AM I am much worse off than if I waken at5 AM.

-Rick

[ol'cs]

When i first tried comtan, within 20 minutes i went from "mildly dyskinetic" to a freaking "Whirling Dervish", and it didn't stop untill much later after i had taken anything and everything that i had on hand to "calm me down". I couldn't believe that one could have such a reaction so i tried it the next day to similar results. I never took another tablet of comtan since, and i won't let a doc "push it on me".
Rev, i swear that there are tiem swhen i should be as i usually am, no difference i the status quo, but for some reason i am " much better" or "much worse" aas the case may be. Can't think of why.

[reverett123]

...is maddening. Variables such as mood, sleep, stress, diet, etc. It would be interesting to have 100 or even 10 pwps design their own experiment of elimination or admission. For example, while trying to keep everything else stable we stayed up all night and reported what the next day was like. Or ate a suspect diet for a day. Or manipulated stress levels.

[Virginia Therese]

Ol'cs related to your experience with Comtan and will place it in my already very thick folder to bring to our neurologist visit on Friday. "Whirling Dervish"...if that weren't so serious, it would be funny! I also have something that Dr. Okun wrote to me NPF..."Ask the Doctor" in response to my question related to the sudden dyskinsias Doreen experienced...and he definitely advised that the Comtan be eliminated...so, Ol'cs...you're right "up there" with the "doc"!!!
I've also copied quite a lengthy article written about Comtan and its adverse effects...the first being dyskinesias...so, I feel that I am well armed for our visit in just a few days. If the neurologist asks me "Who is this Ol'cs?"...well, I guess I will just have to say that you're a very intelligent and caring forum member who is always "there" to help in any way that he can. Thanks, again, Ol'cs

Therese

[oyster]

cs, your description of your pre pd days certainly sent me thinking. i have always enjjoyed working with my hands, from commercial fishing and fish guiding to farming and pottery. this past monday at work i moved a bunch of 6x6x20' posts, some 80# concrete bags, and then worked on my phd-(thats post hole digger). well, i couldnt move very well and after getting home and strggling through dinner and bedtime with my daughter i had to crawl on my hands and knees to get to my bed. tuesday was a real strggle for me.

i havent started any pharmaceticals yet. so i ve never experienced ons and offs. but i know now what feeling symptomatic is like. i have an intentional tremor and it messes with my chewing and swallowing and my voice and facial expression. bradekinesia and rigidity.

i read in here somewhere that over sixty percent of pwd dont starttaking drugs the first year. how long did you go? i am starting to get an idea of what being disabled means. it wierd and i dont know what to say.

[lou_lou]

Anatomy of an Illness as Perceived by the Patient:
Reflections on Healing and Regeneration
by Norman Cousins

can read part of it online at Amazon.com
what I read for free sounds like all of our questions....

read even more on google
link
http://tinyurl.com/23z98p

[lou_lou]

please read page 133 on google

http://tinyurl.com/yvrque

[stevem53]

Originally Posted by oyster

cs, your description of your pre pd days certainly sent me thinking. i have always enjjoyed working with my hands, from commercial fishing and fish guiding to farming and pottery. this past monday at work i moved a bunch of 6x6x20' posts, some 80# concrete bags, and then worked on my phd-(thats post hole digger). well, i couldnt move very well and after getting home and strggling through dinner and bedtime with my daughter i had to crawl on my hands and knees to get to my bed. tuesday was a real strggle for me.

i havent started any pharmaceticals yet. so i ve never experienced ons and offs. but i know now what feeling symptomatic is like. i have an intentional tremor and it messes with my chewing and swallowing and my voice and facial expression. bradekinesia and rigidity.

i read in here somewhere that over sixty percent of pwd dont starttaking drugs the first year. how long did you go? i am starting to get an idea of what being disabled means. it wierd and i dont know what to say.

I didnt take meds for a while either, and when I did it was a small dose of Mirapex which didnt do much..I wasnt suffering by any means, but I wasnt feeling anywhere near as good as I feel now that Ive finally got a good drug regimen going..I stayed away from Sinamet for a year after my dx because I was under the impression that I could avoid dyskenisia for a few years..Not everybody gets dyskenisia..Looking back, that train of thought kept me down..Sinamet is the best thing that I could have done for my condition..It keeps me active, it keeps me functioning, and it keeps me fishing..I can totally relate to what you are talking about..I felt the same way

I dont have off periods yet either..It actually still takes a while to figure out when I am late for my dose of meds..Ive had days when I have forgotten to take my morning meds, because a good nights sleep still charges the batteries so to speak..I will realize it around noon time or early afternoon if Im just hanging around the house..If Im doing some work I figure it out alot sooner because I strt getting very fatigued, very quick