[ol'cs]

Our ability to want to post here goes hand in hand with how we are feeling at the moment. If we have been "thrown off" by a wrong medication regimen, we often feel like getting it out there. Not like we are talking to our doctors, but that we are talking to real live PWP, people that might have encountered the same problem and may have some suggestions toward a "fix". For example, many of us are undermedicated , and for a good reason. Sometimes , following the dosage recomendations given by ones neuro are simply not right. This can make us feel really bad, and one doesn't know that it is a medication problem, but instead tends to blame "it's just PD".
Sometimes , i get so hyperactive and it's before my next dose. What does this mean. I don't know. I'm sure my doc doesn't know. However, many of us have felt the same reactions at one time or another and can say "it was the requip" or whatever.
Certainly, one should never quit taking a drug without a slow down titration, but if this seems to work, it points to the medication, not the disease itself. Take depression for instance. Now I can't miss a dose of effexor, or I just "fall off the cliff" in short order, but is this related to taking the medication at the wrong time? I don't know. And there are so many "i don't knows". We don't know if natural or herbal supplements are really doing any good. We don't know if what our neuro prescribed is an optimal medication for our "individual" case of PD, and we don't know what would be, unless we try a whole gamut of drugs, which we need access to try and see if there is something better, for our individual case of PD.
My point in this point is to "pester" your neuro to try different adjuncts to enable you to "see how you're feeling". I am convinced that there is an optimal drug regimen for all PWP, but we are sorely in need of the attention of an expert in order to "hit the nail on the head".
So for all you PWP who are "feeling badly", don't give up on it. Post your problems here and together we may be able to suggest what you may ask your neuro to try next. And there are also herbal remedies that can make you feel better, but this demands the input of an expert in the subject , one that is difficult to find, because their numbers are so few.
Remember, you CAN feel better, but it demands input from professionals, as well as information that we collectively can give you at this site.
If at first you don't succeed, try, try, try again. cs

[Stitcher]

You are so right, CS!!

Please ask questions!!

[wendy s]

I feel like this thread was aimed at me! Thanks, CS.

I've been on Mirapex 0.75 mg and 100/25 Sinemet CR three times a day for nearly two years now. For the last couple of months, I'm noticeing that they take about an hour to kick in, last for about 3 hrs. and then don't seem to be working. So I'm left with feeling stiff and "gimpy" the middle and end of my working day. Overtime is a waste of time.

I see my MDS the end of Jan. I'm seriously considering stopping work and going on disability, I just don't feel competent and safe anymore, plus I have no energy after work to do anything else. The thought of not working is scary and appealing at the same time. I've been a physical therapist for nearly 35 years and have loved my job until recently.

I was diagnosed five years ago, about a year after I noticed tremor, incoordination, and a limp. I"m 54.

Any suggestions and/or information very much appreciated.!

[paula_w]

posted and lost it...so later! Paula

[lou_lou]

this is for posterity - so we may as well tell it like it is!
this is my 10 cents - I won't give an opinion for less.

The emotional side of illness -

when medicines work... it gives us the tendency to take the extra energy for granted - however we will usually pay for our lovely day - then next day,
unless
-it is sunny and you have someone you like come to visit...
and in that case the happy chemical's -save us!

Depression and not enough sunlight make the regular people feel down.
so people like me can feel lifeless, and have zero life energy.
however I really do not think I have ever met a regular person

and for this reason may I truly feel happy

anyway - on those grey midwestern days - I put a bright light by my
window, and sometimes I forget it's cloudy...

or I will read funny joke books -
funny movies - with Steve Martin in them...
"Dirty Rotten Scoundrels"
"My Blue Heaven"
"The Jerk"
and it most definately will make me feel sooooo much better.
I am thankful for those wild and crazy guys...

we are a cumilative collection of our thoughts, so it is okay to cry but
time yourself and then shake it off! pun intended!

http://www.ahajokes.com/crt030.html

[ol'cs]

At the beginning of sinemet therapy; the honeymoon, means smooth, well co-ordinated response to the effects of Dopa. Then we get what we cant control; dyskinesia and dystonia.
The average time that a PWP can handle a job after diagnosis is averaged at 5-6-7 years before they are legally disabled and working and fighting the disease is too much. SSDI now accepts PD as an incurable, debilitating disease, so you shouldn't have any problems there, but like I've said a thousand times , and i'll say it a thousand more if i have to, every young PD victim, get ALL the insurance you can before the dianosis is made. This tiny bit of information could be the ticket to a "life after PD" that is tolerable at least financially. If you just hit this post right now and are thinking that you might have ANY neurological disease, get covered quickly as you can , while the answer to "do you have parkinsons disease" can be honestly answered "NO"
Now to you wendy s. WE had great discussion in the archives about how to deliver a constant amount of Dopa, using sinemet tablets. Many of us found that crushing the tablets and chowing that mixture down gets you going in 15-30 min. well, that perhaps works the quickest by oral route, there's not much finesse at all is there? That's why the quick action of an oral dose of chewed sinemet demand sit gets into the system quickly. Crushed sinemet is practically tasteless so you can dissolve your days ration in say a bottle of apple juice, and take as needed every 15-30 minutes. This has proven to be different than sinemet CR, because it's patient controlled, you get a good "feel" as to how much and when you need to take dopa (shake before using).
AS far as the mirapex goes, quite a few of us find it as benefitial co-therapeutic along with dopa; and a lot of us don't. It's probably better than ReQuip (however some PWP really take to reQuip, you have to try it. The lesser potentcies of Amantadine and a number of adjuncts to sinemet have to be tried out one by one, to determine your optimum response from the optimum choice arrived only by trial and error. That means a lot of fiddling with PD drugs. YOu'll get it right, but it takes awhile.
And retiring? After 35 years you've given to the world more than it's given to you. Go for it! you can't take your 401k with you cs

[ol'cs]

I usually charge 8 cent's but have never billled anybody
There really is a lot of information if we are all serious about fixing OURSELVES.cs

[scotch1]

Possibly adding comtan to the sinemet will help extend your on time with sinemet.This can be done with stalevo(Sinemet + comtan) or taking comtan as a second pill.Stalevo is expensive but does cut down on the # of pills.Not all handle comtan well.In my case I have found it quite effective.

[paula_w]

ok trying again.

Wendy, you have listed the classic reasons people give when they talk about retirement. It is affecting their job and they have no energy for anything else but their job. Sounds like it's time to at least check into it.

Cs, after having pd for awhile, when the meds are playing havoc with you, I think what you eat and when you eat it is just as relevant to how well your med is going to work as anything else. Too much meat and I know I am going to go off and try to remember to take extra med before I eat. Sometimes even extra med isn't enough. A big breakfast is just asking for it. Protein blocks your meds, but just too much food seems to also.

No sleep? Chances are your meds won't work as well. Fight with your spouse? Instant off.

You mentioned a hyper feeling. I know what that feeling is and I hate it. There is such a thing as "end of dose" dyskinesia. I don't know if that applies but I think our insides are doing things just as tight and rigid feeling as our outside is. I become dehydrated from the meds by afternoon and that can cause pain and do weird things to your muscles.

How do I feel? Depends on which half hour of the day you ask me and I know you know exactly what I mean.

What you eat and how much you eat becomes very important though.

my two cents,
Paula

[ol'cs]

Gets mish-mashed into the component amino acid building blocks and neurotransmitter precursors. Now you are trying to get taken up by the brain from the blood , amino acids for building functional brain tissue, but dopa with one extra hydroxly group on the aromatic ring of it's structure (something that a brain enzyme acting on absorbed tyrosine must do anyway, before we get any dopamine) has to do it metabolically anyways. Thus, every amino acid that is roaming in the vicinity of the blood brain barrier is either allowed in or it's not.
Dopa has to "compete" with absorption of all other essential amino acids,and pharmacologics dictate that less dopa gets into the CNS when blood concentratins of other amino acids are high.
Eat meat when your body is purged of other food, and in small amounts. WE get enough protein in our western diet to kill a horse so to speak, so one must hardly ever worry about protein consumption, just when it has proven to be opertune times to eat meat; none if you're a vegetarian (perhaps best), 4-6 oz/day of anything from prime rib to baked clams, otherwise
A spartan diet is usually in the wings for a pwp, because inactivity leads to easy weight gain. Among a whole host of things like heart trouble, (clot formation, and cardiopulmonary weakness) have to do with lifestyle.
My suggestion
Rome is burning, grab a fiddle and give it your best shot