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Hi Robert, >Jim...I noticed in your postings that you are taking Sinemet and >Elderprl and that you have had PD for 13 years. I am 60 and taking >Siemet CR 50/200 (1 at 6AM , 1/2 at 10,11, 1 and 3:30pm. I take the >Elderprl at 9 :30 and 11:30. I have been diagnosed with PD for 7+ years. I take one Sinemet 250/25, one Sinemet CR 200/50, and one Eldepryl 5mg. on rising, whatever the time. I take them with a glass containing approx. one-half teaspoon of Epsom Salts (magnesium sulphate) disolved in a little hot water, and about 6 oz. whole orange juice. The Epsom salts does two things. It supplies needed magnesium, an essential element for PD sufferers, and sulphur, which helps control serbhorea (sp?), a skin condition PD sufferers are prone to; and it helps prevent constipation. The whole orange juice does four things. It gives the stomach something to munch on so that it doesn't react to the sinemet; it supplies about 200% of the RDA of vitamin C; it supplies some deitary fibre, another aid against constipation; and being acidic, it somehow seems to deliver the non-CR sinemet to the system sooner. I then set a very small electronic timer I carry, to one and a half hours. When this goes off, I take half a sinemet 250/25, and reset the timer for another hour and a half; I repeat this throughout the day. This usually gives me all the mobility and freedom from tremor that I need, except in exceptional cases involving stress, when I may need the assistance of Sinequan, a tri-cyclic anti-depressant, which I have in 10mg and 25mg strengths, so I can take a dose matched to my perceived need. I take my last 'maintenance dose' about two to three hours before I go to bed, otherwise I can't get to sleep because of 'restless legs', not to mention an overactive mind. Just before getting into bed, I take half a 250/25 sinemet, and half a 200/50 sinemet CR. This helps maintain dopamine at a sufficient level to enable me to turn over during the night, while still allowing me to sleep through for 7-9 hours. I also take up to 50mg of sinequan, as needed, partly to put me in a restful mood, and partly to keep at bay the psychotic dreams that both Eldepryl and sinemat can generate. I have experimented over the years with Eldepryl, and have found that not taking any seems to make the sinemet less effective, while taking more than 5mg seems to have no more effect than just 5mg. Taking Eldepryl within four hours of bedtime can lead to unpleasant nughtmares. >My Sinemet CR seems to be wearing off faster this past year I experienced a sudden decline in the effectiveness of the sinemet. I had been taking as little as one 250/25 on rising, then one-half at midday, then one-half at late afternoon. I put the decline in effectiveness down to the loss of natural dopamine production sufficient to create a situation where I had a debit balance rather than a credit balance, if you see what I mean. (I presume that you are aware that the death of cells in the substantia nigra is progressive and irreversible.) > and at times I experience severe pain and weakness in both hands. I only experience pain when the sinemet doesn't 'take hold'. Then I can get both severe cramping in muscle groups in the legs and back, and severe weakness in both legs and hands. However when the sinemet *is* working, I approach my pre-PD self. > I also have developed the unconscious problem of keeping my mouth open and waving my >left arm outward rather wildly while walking. Both of these unsightly >movements can be consciously controlled when brought to my attention. I experience similar symptoms with "end-of dose" effects, if I am prevented from observing my 1 1/2 hour regimen. >My primary problem is walking and handwriting. I am still working but >sit most of the day. As the day wears on it requires more and more >effort to walk. I strongly suggest that you make every attempt to get *some* excercise, mainly walking, even if it is difficult and painful. There are two reasons for this; the first is, the principlce of 'use it or lose it', in other words, you will lose muscle mass if you don't sufficiently exercise the muscle groups, eventually arriving at a stage where you *can't* use them. Even 'passive' excercise, where the muscle groups are moved for you, either by a masseur, or a powered machine, for instance, is better than none at all. The second reason is that one can develop osteoporosis, leading to brittle bones, with concommitant risk of breaking hips, thigh bones, and even ribs. This of course leads to even less mobility, and a worsening condition. Of course, osteoporosis prevention also needs sufficient calcium and vitamin D in the system. > I accept severe shuffling in the AM since my last med >was at 3:30pm the previous day and it takes until 7:45-8:15am for that >6am dose to kick in. I am to retire in April and thinking about trying >Mirapex at that time. Since we are almost the same age and using the >same meds, I wondered what your experiences and limitations are. I have >operated on the philosophy that less meds the better hoping to prolong >effectiveness and accepting greater PM off time. I haven't tried Mirapax yet. As a local ad puts it, "If you're on a good thing, stick to it". <grin> When I have had to endure a 'drug holiday' for whatever reason, ie, being without sinemet, I become completely 'frozen', a condition which I detest, and, because of a personal phobia against being physically restricted in any way, become prone to panic attacks. Not good! I feel that if such a condition became permanent, I would look for someone to 'pull the plug." But not to worry! I am relatively pleased with life under sinemet control, work at my profession to a limited degree, enjoy sightseeing, visits to art galleries and museums (somewhat limited, due to restricted mobility, unfortunately), arranging music on my computer, writing to the Parkinson's List <grin>, and talking to good friends. In between times, I edit the local Friends of the Regional Gallery newsletter, serve on a couple of committees (down from my record of 15 at once, when at my peak <!>), and assist the Parkinson's Disease Research Group of which I am a small cog. So I usually have little time to "rail against a cruel and uncaring fate", and a jolly good thing, too! <grin> I hope the above information has been of use to you. Remember that PD is a highly individualistic disorder ( I can't get myself to call it a 'disease'. One can't catch it, or pass it on!) and that what suits one, may not suit another; just as what disrupts one may not have the same effect on another. Keep your chin(s) up, and look after yourself. Jim [59/13 Sinemet, Eldepryl] ------------------------------------------ Jim Slattery - [log in to unmask] CW PD Web - [log in to unmask] http://www.bec.net.au/~cwpdg/ ------------------------------------------