[ol'cs]

Or anything remotely like it, but my neuro and I have found an adjunct drug that I believe has great promise to do ONE THING, that is, provide us PWP enough of a brief respite from the disease to GET THINGS DONE. This means necessary things, like getting ready for a doctors (or any other ) appointment, or getting out of the house to do something that we pretty well MUST do.
Up until this point, I have accepted that I just couldn't do much of anything. Since I have no caretaker or anything or anyone to help me do the things in life that require great strength and endurance at times, i asked my neuro if we could find a stimulant to get me going, when i absolutely need to. over the last few months, we have been experimenting with different drugs to see if we could find one that works, and the right dose and use.
I had tried several, without great success. Then my neuro gave me Dextroamphetamine, 5mg normal release. I tried to vary the dosage and the timing an dhad some success, but it was clearly not optimal. THen he gave me Dextroamphetamine 15mg controlled release. MY first capsule woke me up from this bad dream like rumpelstiltskin !!!. My wife had been trying to get me to get rid of a lot of the things that I had accumulated in life before we divorce, or i pass on. One sure can accumulate a lot of "stuff" in life and she didn't want to be burdened with having to separate the wheat from the chaff, so to speak. I was always so drained of energy that i just let stuff molder in the basement.
That first capsule gave me so much energy that I immediately felt physically as good as I did 10 years ago. I could not believe it, I put in a sustained 8 hours of intensive bull work, before i crashed. Believe me mates, my wife told me that i was "faking" having PD !!!
Of course, this is a "Cinderella drug" and everything goes back to pumpkins and mice at midnight, but it bloody well worked !!!
I am being very careful not to take it every day because it is yet another addicting drug, and is not without side effects. I tried many different doses and settled on 20mg/day taken as 2, 10mg capsules in the morning, if I need to be totally functional for a brief period, or , I can take 10mg in the morning and 10mg at noon, if I want to skip my usual "sundowner" nap at the beginning of evening, and still be acceptably on all day.
I have found that i can now go out without fear of going off suddenly. I am guessing that what is happening is that Dexedrine is acting as a Dopamine reuptake inhibitor, as well as adding an extra "oomph" from being acted upon by the various hydroxylases in the brain to give catecholamine or adrenaline like metabolites.
I haven't moved like this in years. I am sore all over from using muscles i forgot were there. i will procede cautiously and let you know what happens. In the meantime, why don't some of you of you "lab rats" convince your doc to give it a try. IF your blood presure is good and you have never had any problems with your heart, chances are thatyour neuro will go along with this experiment. This could be the start of something good for SOME of us, and another FDA approved use for amphetamines, which are currently only approved for use in narcolepsy and ADD.

[ol'cs]

can't i erase the double post?

[imark3000]

Amphetamines in the treatment of Parkinson's disease.Parkes JD, Tarsy D, Marsden CD, Bovill KT, Phipps JA, Rose P, Asselman P.
Twenty-two patients with Parkinsonism were treated with levoamphetamine and 12 of these with dextroamphetamine. Levoamphetamine resulted in a significant improvement in disability from Parkinsonism, although the reduction in total disability, tremor, akinesia, and rigidity scores was slight (ca 20 percent). Dextroamphetamine in lower dosage also reduced disability by some 17 percent. The most disabled patients, including those also on levodopa, showed the greatest response to amphetamines. Previously, amphetamines have been reported to be a selective treatment for the oculogyric crises of post-encephalitic Parkinsonism. Amphetamines are thought to cause the release of catecholamines from central neurones. Their action in Parkinson's disease may be limited because of pre-existing striatal dopamine deficiency. Side-effects of amphetamines, anorexia, and CNS stimulation are different from those caused by levodopa in patients with Parkinson's disease.

[ZucchiniFlower]

Hi Cs, it seems that you have a very helpful neuro! I'm so glad you found something that is so helpful. Continue to be careful with it, and please keep us posted.

~Zucchini

[lurkingforacure]

I previously posted asking if anyone was taking ritalin, which our neuro gave us. I dont' think anyone responded. We tried ritalin, and didn't really get much of anythingout of that, so our neuro went out on a limb and gave us some adderall. THIS stuff worked! Problem is, it is very addictive, so we take it only when we KNOW we need to be on, such as for important meetings, etc., or when you have simply got to be able to get a certain project done. You do feel so much better on it, but like ol' cs, you cannot take it every day, or even every other day, but it's good to know it's there. Also, be very conservative of the dosage, we take 1/3 of the lowest dosage pill you can get, and that is plenty (I think that's 10mg). It's also very tightly regulated, and so if you get an rx for this, you only have a few days to fill the prescription or it's void, and also, pharmacies require a written script for this, so no phone or fax orders. But it's worth the hassle for us.

[reverett123]

...of it as a rescue med? Say you are out and start going Off, would it bring you back long enough and quickly enough to make it to the barn?

[ol'cs]

I have tried the apokyn pen and it was a flop imho as far as a rescue medicine; however, I bet that 2 or 3 mg of Dexedrine in the pen format would do an EXCELLENT "rescue job". I'd bet that it would pick you up in 2 seconds flat.
What i did notice that i think is significant is that i don't go off like a lighbulb when i'm taking dex. I make it to the grocery store about once a week and used to find myself dragging behind the cart, in an "instant severe off" sitation. Some times I had to get assistance just to make it out to my car. This has never happened with concommitant dex usage. IT definitely prolongs the on time and dosen't let you "crash", there is some reserve there that allows you to carry on where you would normally go off. I think that dex would be very helpful in situations when you don't know how long you will be tied up somewhere, and you are past the point where another tablet or two of sinemet just doesn't do it.

[stevem53]

Originally Posted by ol'cs

Or anything remotely like it, but my neuro and I have found an adjunct drug that I believe has great promise to do ONE THING, that is, provide us PWP enough of a brief respite from the disease to GET THINGS DONE. This means necessary things, like getting ready for a doctors (or any other ) appointment, or getting out of the house to do something that we pretty well MUST do.
Up until this point, I have accepted that I just couldn't do much of anything. Since I have no caretaker or anything or anyone to help me do the things in life that require great strength and endurance at times, i asked my neuro if we could find a stimulant to get me going, when i absolutely need to. over the last few months, we have been experimenting with different drugs to see if we could find one that works, and the right dose and use.
I had tried several, without great success. Then my neuro gave me Dextroamphetamine, 5mg normal release. I tried to vary the dosage and the timing an dhad some success, but it was clearly not optimal. THen he gave me Dextroamphetamine 15mg controlled release. MY first capsule woke me up from this bad dream like rumpelstiltskin !!!. My wife had been trying to get me to get rid of a lot of the things that I had accumulated in life before we divorce, or i pass on. One sure can accumulate a lot of "stuff" in life and she didn't want to be burdened with having to separate the wheat from the chaff, so to speak. I was always so drained of energy that i just let stuff molder in the basement.
That first capsule gave me so much energy that I immediately felt physically as good as I did 10 years ago. I could not believe it, I put in a sustained 8 hours of intensive bull work, before i crashed. Believe me mates, my wife told me that i was "faking" having PD !!!
Of course, this is a "Cinderella drug" and everything goes back to pumpkins and mice at midnight, but it bloody well worked !!!
I am being very careful not to take it every day because it is yet another addicting drug, and is not without side effects. I tried many different doses and settled on 20mg/day taken as 2, 10mg capsules in the morning, if I need to be totally functional for a brief period, or , I can take 10mg in the morning and 10mg at noon, if I want to skip my usual "sundowner" nap at the beginning of evening, and still be acceptably on all day.
I have found that i can now go out without fear of going off suddenly. I am guessing that what is happening is that Dexedrine is acting as a Dopamine reuptake inhibitor, as well as adding an extra "oomph" from being acted upon by the various hydroxylases in the brain to give catecholamine or adrenaline like metabolites.
I haven't moved like this in years. I am sore all over from using muscles i forgot were there. i will procede cautiously and let you know what happens. In the meantime, why don't some of you of you "lab rats" convince your doc to give it a try. IF your blood presure is good and you have never had any problems with your heart, chances are thatyour neuro will go along with this experiment. This could be the start of something good for SOME of us, and another FDA approved use for amphetamines, which are currently only approved for use in narcolepsy and ADD.

CS, Im really happy to hear that you had such a remarkable experience with DM..Ive been taking a half teaspoon before bedtime every night for about a year and a half..The first few months I took DM, it was like being on a pd honeymoon..I was moving around like a new man, and I thought that, if it provided neuro-protection as well, like Dr Hong's study suggested, them I would be in like Flynn..What I can tell you about my experience now, is, like any drug that Ive ever taken in my life, Rx-ed, or purposely addicted to..the effects get less and less profound as time passes..Although I am still doing reasonably well, I no longer seem to enjoy the re-uptake effects of the DM..I say that with some skeptecism, because a number of changes may have occured..Either the re-uptake effects have diminshed from prolonged use, and/or, my body needs and elevated dose to produce the desired results..I dont know the answer to this, because I have not tried changing the dose..or..I have progressed..(which I have)..and the DM cannot do what it was previously doing at a half teaspoon per day..I also dont know the answer to that riddle either, because I have not tried to see what would happen if I stopped talking it completely for a period of time

Judging by your experience, plus that fact that we have met, and I have a basic understanding where you are at in terms of progression, in comparisson to myself..a 5mg dose of DM doesnt give me any "get up and go" anymore..So Im thinking, that due to the long term use Ive had with DM, it is probable that the DM looses its re-uptake inhibiting qualities..So my conclusion is that if one is seeking a "rescue" drug, rather than the possibility of the neuro-protection that it allegedly may provide..Then DM is a great rescue therapy..It is also alleged, per the results of a study thats retrievable out in cyberspace somewhere, it is also supposedly gives a knock out punch to dyskenisia

So my friend, I would love to hear about your're ongoing experiences with DM, as well as your thoughts on my anaysis

[ol'cs]

Steve- I have the feeling that we are talking about two entirely different drugs here? What you call DM is that "Dextromethorphan"? I am talking about Dextroamphetamine, which is related to methamphetamine. The two are VERY different in structure and CNS activity.
Anyhoo, the salient points to be hammered home about Dextroamphetamine is that it is a very potent , quick acting stimulant, and that it has the potential to greatly lengthen the on time, for those who have those "instant" offs that can be both embarrassing AND dangerous. Due to it's highly addicting properties,and it's quick "tolerance" building effect (which means that it takes more and more to produce the initial effects) dextroamphetamine is not a drug that you would want to use every day. The amazing thing about Dextroamphetamine, is that thousands of children take it every day for years to help with ADD (attention deficit syndrome), as the drug called Concerta. Although it is a CNS stimulant, it also has the ability to calm hyperactive children, quite a paradox.
I have never taken well to ANY antidepressant, but dextroamphetamine seems to lift my chronic depression for as long as it's effects last. I accept being addicted to Parkinson's and pain medication; without those drugs life would be intolerable, but i don't have to feel good or be able to do physical things that i can't do normally with Parkinson's, ALL the time, so I can take dextroamphetamine, intermittantly, at my discretion, and with good sense (like a casual drinker), i shouldn't get, "hooked" on it.
I truly believe that DEX-A, CAN BE a useful adjunct drug in PD, though , like evrything, is not for everybody.

[stevem53]

Originally Posted by ol'cs

Steve- I have the feeling that we are talking about two entirely different drugs here? What you call DM is that "Dextromethorphan"? I am talking about Dextroamphetamine, which is related to methamphetamine. The two are VERY different in structure and CNS activity.
Anyhoo, the salient points to be hammered home about Dextroamphetamine is that it is a very potent , quick acting stimulant, and that it has the potential to greatly lengthen the on time, for those who have those "instant" offs that can be both embarrassing AND dangerous. Due to it's highly addicting properties,and it's quick "tolerance" building effect (which means that it takes more and more to produce the initial effects) dextroamphetamine is not a drug that you would want to use every day. The amazing thing about Dextroamphetamine, is that thousands of children take it every day for years to help with ADD (attention deficit syndrome), as the drug called Concerta. Although it is a CNS stimulant, it also has the ability to calm hyperactive children, quite a paradox.
I have never taken well to ANY antidepressant, but dextroamphetamine seems to lift my chronic depression for as long as it's effects last. I accept being addicted to Parkinson's and pain medication; without those drugs life would be intolerable, but i don't have to feel good or be able to do physical things that i can't do normally with Parkinson's, ALL the time, so I can take dextroamphetamine, intermittantly, at my discretion, and with good sense (like a casual drinker), i shouldn't get, "hooked" on it.
I truly believe that DEX-A, CAN BE a useful adjunct drug in PD, though , like evrything, is not for everybody.

Dextroamphetamine..Ohhhhhhh..ok..I wasnt paying attention..I saw "Dextro" and without taking a close look at the word, I automatically assumed it was Dextromethorphan

This illness does have a way of forcing one to think outside the box of the standard pd drug regimen..Good for you buddy!!..Its so good to hear you've got something that works that remarkably