[paula_w]

At about this time every single day, I become a very poor verbal communicator. Taking l-dopa every two hours, leaves me very miswired mentally and physically by the dinner hour.

My mouth takes on a somewhat pointed, puckered up shape as I constantly fight the urge to let my lower lip and chin collapse in; my tongue just doesn't follow directions.

Thoughts are like mental festination. I am so distractable that my thought can change to something else after just one word being expressed about the first thought. It can result in speech hesitations and jumble my verbal expression all up so that I don't make any sense. This easily passes for weirdness or drunkenness.

It's difficult to carry on a conversation with me like this. I end up apologizing for much of what comes out of my mouth, not understanding it myself. IT makes me look like I am not being truthful - I hate it.

So after dinner, for which I have no appetite and usually do not eat, [another pound lighter] I have to chemically begin my journey "down", without going off. And so it goes, each and every day. My personality is controlled by drugs. The alternative is DBS, which they just publicized can cause cognitive problems.

I have to accept that I am headed for stupidity - not so much in intelligence but in verbal and physical expression. As someone told me seriously, without intending to insult, "you aren't stupid, you just look stupid."

I am still in PA, truly enjoying my family and hometown reminiscing. I have a cohort here - a cousin who almost died of Toxic shock syndrome in the late seventies from the tampons. She has talked about her brain short circuiting ever since. We make a great team...she understands and short circuits all day. So I have a shot at being more with it than she is in the early day, well early afternoon, after about 3 or 4 doses, before the craziness of too much sets in, and the lips pucker, etc etc. I relish those few hours, when I am calm.

My formula for coming down is also fine tuned. I am CHEMICAL....sing it Helen Reddy.

let's get to that cure,
paula

[reverett123]

I don't know if you are fooling with - er, I mean experimenting with - the mucuna or not, but it being a powder you can really micromanage the dose and that might give you more control. Mix it with a tiny bit of sinemet but watch for dyskinesias as a sign of too much.

[paula_w]

Rick,

I have yet to take mucuna pruriens, but as everything else I take, a small and regular pinch of a different substance is a necessary part of the regimen for the solid night of sleep that I figured out how to get. Fine tuned- with the only daily excess being the l-dopa.

If I wasn't sleeping, I'd be taking l-dopa round the clock. There's no dilemna there for me.

paula

[Ibken]

Originally Posted by paula_w

At about this time every single day, I become a very poor verbal communicator. Taking l-dopa every two hours, leaves me very miswired mentally and physically by the dinner hour.

My mouth takes on a somewhat pointed, puckered up shape as I constantly fight the urge to let my lower lip and chin collapse in; my tongue just doesn't follow directions.

Thoughts are like mental festination. I am so distractable that my thought can change to something else after just one word being expressed about the first thought. It can result in speech hesitations and jumble my verbal expression all up so that I don't make any sense. This easily passes for weirdness or drunkenness.

It's difficult to carry on a conversation with me like this. I end up apologizing for much of what comes out of my mouth, not understanding it myself. IT makes me look like I am not being truthful - I hate it.

So after dinner, for which I have no appetite and usually do not eat, [another pound lighter] I have to chemically begin my journey "down", without going off. And so it goes, each and every day. My personality is controlled by drugs. The alternative is DBS, which they just publicized can cause cognitive problems.

I have to accept that I am headed for stupidity - not so much in intelligence but in verbal and physical expression. As someone told me seriously, without intending to insult, "you aren't stupid, you just look stupid."

I am still in PA, truly enjoying my family and hometown reminiscing. I have a cohort here - a cousin who almost died of Toxic shock syndrome in the late seventies from the tampons. She has talked about her brain short circuiting ever since. We make a great team...she understands and short circuits all day. So I have a shot at being more with it than she is in the early day, well early afternoon, after about 3 or 4 doses, before the craziness of too much sets in, and the lips pucker, etc etc. I relish those few hours, when I am calm.

My formula for coming down is also fine tuned. I am CHEMICAL....sing it Helen Reddy.

let's get to that cure,
paula

i know what you are talking about paula, as the same sort of stuff happens to me quite often - more as the day and the l-dopa wears on. i sometimes feel like W slurring and slushing my words - i am certain he (too)is medicated. yep, sound a little drunk, my tongue gets in the way of my teeth and sometimes i bite it, etc. i too feel stupid. brain and tongue not correctly connected.. how could they be when our bodies are driven by jet fuel - instead of plain old regular energy!

well, one more reason to live w/ other pwp, eh - like your cousin who understands!

how in the world did you make the drive to Pa?!!! very impressive...

btw , saw this pt today and it was very interesting. prrt "downregulates " the autonomic nervous system. http://youtube.com/watch?v=gYtrj3OuyuI

and one more thing - we all know very well that you are far from stupid - but i do know the feeling.

ibby

might be a prrt therapist nearby you? they are sprinkled about.

[ZucchiniFlower]

Paula, there's a trick I use when I'm having trouble speaking, and need to talk on the phone. I put on a phony smile, and try to speak without moving my lips, like a ventriloquist. It looks crazy, so I just do it on the phone, and I can speak more distinctly and quickly. Maybe it will work for you, too.

I just tried reading this message outloud. I'm slurring and lisping. I can't even say certain sounds without my mouth contorting as if I have cerebral palsey. (I do have dystonia, so that may be causing my speech problems.)

But when I act like a ventriloquist moving my lips much less, I can read it much better. I do need to pause midway through it, though.

It's really helpful on the phone.

[smithclayriley]

Interesting, when I was over medicated people are now telling me there were times I didn't make sense and sometimes my voice would change. This is no longer the case with the reduction of my medications. A terrible dilemma for those that can not reduce the drugs.

[jcitron]

I find that I become tongue tied too particularly towards the end of the day, but I think it's the combination of the medication plus fatigue. If I need to speak, which unfortunately is too often, I have to slow my thinking down carefully, and rehearse what I have to say prior to spitting it out. People look at me like I'm not interested or like I've become nim-witted, but this is better better than sounding like a twit.

The other thing that happens to me is I become more and more softspoken, which makes it diffult to speak in public places. I've noticed that noise always has its way of timing its self with my conversation so the other people can't hear a word I have to say. I find myself repeating my conversation sometimes several times before they understand me. This really is troublesome and frustrating particularly in a restaurant where you want to talk to someone you haven't seen in ages.


John