I'm wound too tight!
 

Here I sit, on the edge of my bed waiting to see if I win any of the $185 million in the Powerball lottery. I look at my watch every few minutes I actually think I will win! It (the lottery) defines me - controls me - leads me! I most definitely have trouble with obsessive/compulsive behaviors.

If I go to Wal-Mart alone, I will spend nearly $200 - and for stuff I'll never use nor need. If I get gas or go to check-out at some store and see scratchers, I will have to buy them. If I don't go straight to the car, I'll buy more!

My most dominant (and obvious) symptom is dyskinesia. And no, I can't cut my meds down. I've been on this regime for over a decade. I take an agonist, but only 8 mg, which is barely considered a therapeutic dose. I take 3 Comtan with my first 3 morning doses of one 25/100 Sinemet (carbidopa /levodopa). the first dose begins at 6:00 or 7:00 am (or if I wake up over 2 hrs earlier, I will have to pop an extra Sinemet), Then the second at 3 hrs and third doses and following every 3 hours. And the only other pill I take specifically for PD is Selegeline or Eldepryl.

If I mess with that cocktail in any way, my symptoms get extremely worse or I get depressed - very depressed. I do take meds for depression regularly. Now, does that medication schedule sound excessive for someone who has had Parkinson's for 18 years?

I was type A personality before PD, but I wasn't so forgetful, or so disorganized, or I could prioritize what I needed to. Today and since diagnosed, I have progressively gotten worse at starting 5-6 projects, and doing the one least needed. And I am aware that I'm doing that, but I can 't stop.

I don't do any repetitive behaviors ( like washing hands or punding),but I clean excessively, but end up rearranging things and make a worse mess! And do not let me near a slot machine alone! What else can I say?

I do not like the way this "other person" is driving everything I do. I have had some counseling and have even been in clinical trials, but nothing seems to help.
And finally, I have developed somewhat of apathy about such behaviors. I care, but not enough to get serious about trying to change.

And I want perfection, even though my work is not perfect. I used to do close to perfect work, but not anymore. Like I want to change the title of this thread to, "I'm wound too tightLY," but won't.

Anyone with similarities? Any therapies that work? Any suggestions? Is this part of the disease or acquired behaviors? And why?
Peg
Ps - I'm late for checking the drawn lotto numbers - wish me luck!

Peg - I have no advice to offer; just want you to know that you are not alone!

xoxo

I used to take on occassionn 1 mg of liquid deprenyl citrate and tho subtle it wound me up like a clock!- I was alienating my loved ones with my ego on deprenyl and when I realized that just stopped it.... and it was splitting my personnality too - eldepryl does act like a barbiituate.
Isn't Low dose Naltraxone used to assist for some drug addictions?

And yes your med schedule seems pretty overwhelming to me anyway. Peg, you say "
If I mess with that cocktail in any way, my symptoms get extremely worse or I get depressed - very depressed." Seems to me a good support system might be helpful....is your depression worse in the winter? Sounds like its time to consider a new doc! Try something totally new - something that would nourish you. Have you ever considered Naturopathic medicine?
I'm glad you posted.
Kind regards
sharilyn

I think I am very busy but no one sees me doing anything
 

Peg, our own magnificent street-fighter, said:

QUOTE …”I have progressively gotten worse at starting 5-6 projects, and doing the one least needed. And I am aware that I'm doing that, but I can 't stop…. I do not like the way this "other person" is driving everything I do. … nothing seems to help.
… I have developed somewhat of apathy about such behaviors. I care, but not enough to get serious about trying to change….” QUOTE

Peg, the sentences I copied from you above are exactly, really exactly, what has happened to me…. Entire weeks go by where I seem to myself to be incredibly busy, but I can see myself doing absolutely nothing, except being obsessed about something. I don’t do the gambling with lottery tickets; I do the gambling by going on the internet and attempting to undermine civilization, for example, and ending up in truly bizarre court cases, which I sort of knew would happen and which i sort of aimed at.
I have heard of Parkinson’s Apathy but I don’t know what that is, or if this is that, or why, or what to do about it. Like you, I have tried and tried to regain control of my agenda, but the day won’t write what the night penciled in.
Sometimes it is very costly – honey did you pay the Visa bill in the past 6 months? But sometimes I think I sort of like it – new things are discovered – and sometimes I recognize it as a Rocky Mountain High – a desire to be high, to have strong emotions, to go where nobody in his right mind would go, to have an impact, to make everybody laugh and cry and dance and maybe take over an island somewhere and make it into a Republic For the Bewildered, and move us all there, where we would be a majority.
Whatever it is, it is very strong, and you are the first person I have heard talk about it.
We get wound up too tight and then we go “Sproing, spring, ka-boom” and then we go looking for more; there is a lot more emotion and revelation going on inside me than in the newspapers or everyday life. We are the ones who pull the pin on the 10-second fuse that sets off the hand-grenade, and we hold it for 6 seconds before throwing it, while all around yell “throw it, throw it.” But it may well be a good strategy, even if the tactics look risky. And you and I both, Peg, need to believe that the NEXT minute will be as full of intensity as the LAST one, and we have invented these scenarios where all things could possibly happen, and our brains are tired of the same old - same old, but our brains perk up and pay attention when we stand at the edge of a cliff and say, “Watch this”.

I am not describing this right because I don’t know what it is, but I do know it exists and these things do not exist in a vacuum. It is some sort of system that helps us handle the world as we now see it, which is not the world we were trained for.
And it is not hard-wired as much as hot-wired. Our fuses are all burnt out, so we jam pure copper into the circuits. It works, although everybody in the neighborhood wonders why their lights dimmed.
I observe myself doing it and I surprise myself. Or rather, the “other” surprises me.

Moondaughter
 

Thanks so much for your post. Although my Lorcal Neuro has practices probably not under the most recent guidelines, he seems to keep updated. he has suggested numerous new therapies and I have tried most. He was quick to refer me to a clinical trial requiring stereotactic surgery, which I had done 12 years ago, and I definitely improved! But the trial was stopped in 2008 reporting that "it did not show efficacy in phase II double-blind placebo -controlled by sham surgery." I was one of 6 in phase I open-label study, where even after 4 years was showing almost a48%improvement over individual baseline measures.

I tell you all of this to show that I have been progressive (and aggressive) in treating my symptoms. Oh, we'll.
Peg

12 years after diagnosis and on combo of sinemet IR and CR, usually less than 900mg/day.

had to recently up my doseages and added 5mg selegilene in the morning, seems to add 1hr of on time.

no dyskinesias, no O/C

i'd have to take more meds if i was working and/or had to care for others but for no good reason have avoided comtan and agonists.

selegilene + 100IR + 200CR 1st thing works about 4hrs, then 50IR/200CR and then 150IR every 3hrs, adding more if i need it.

take a lot of supps, only one that has noticeable affect is american ginseng, gives slight energy boost for 1-2hrs.

not apathy
 

peg r u and i apathetic? about PD? apathy about PWP? No.
it is not apathy
it is not depression
quote:

Apathy is also used to describe indifference, such as to politics or NASCAR racing, but in a psychological context we are talking more like the opposite of motivation, the lack of will to go on and the inability to care about the consequences.quote

../. yeah then we hit you with our walking sticks

apathy? not same at all not apathy not lethargy

Dyskinesia - Have you tried amantadine?
 

Hi Peg - my dyskinesias have been getting so bad after so many years that I was lucky if I got 20 minutes of good on-time in a 2 and a 1/2 hour dose.

So I decided to try amantadine, remembering that it was supposed to ameliorate dyskinesia. Well I can't tell how it's going to work out long term, but after three weeks it has almost completely eliminated my dyskinesia. I get almost my full dose period without jerking or writhing or twisting myself into a pretzel. My back and neck feel much better as a result.

But it has also, at least for now, made my movements somewhat slower (not "off", but just plain slower). Right now it seems a relatively small price pay for the relief I have gotten. They say that for many people the anti-dyskinesia effect wears off after several months or a year. We shall see. As you know, I am Bradykinetic rather than tremor dominate.

But I will say that I had almost forgotten what it was like to feel like I didn't have PD. Even when the other meds are not working perfectly, usually in the evenings, it is still a blessing to sit stiffly but without the involuntary muscle movement.

For what it's worth.

Best,

Greg

Thanks,, forumites!
 

soccertese - energy? ginseng? I will get some tomorrow!

Bob - dearest Bob - "exactly" is a mighty strong word, but only you would.

I knew apathy wasn't quite the right word - I don't think there is one. I believe it can be defined as: "I'm pretty $#@!&* sick of this disease!" Is there a word fore that emotion?

Greg - I tried amantadine twice, and guess what? It works! My dyskinesias were almost nil, (although I understand it is a temporary fix)then after about 3-4 weeks I get horrible edema of lower extremities (especially feet) and horrendous leg/foot pain. I have enough pain. If only we could find a way around substituting one symptom for another. . . or is that one pill for another symptom?

Yes, Bob; you are correct - it IS indifference. a euphemism for "hate"' might work!

I dont have OCD...I have no CD :D

I have had the same exerience with meds..One change makes a big change

I had no clue how much Amantadine made in my symptoms, untill I had to go from 300 mgs - 200 mgs cuz of cornea edema in both eyes

Now it's back to freezing, shufling, and an occasional fall, but another trade off..My vision was geting so bad I was almost blind