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Old 06-23-2010, 09:09 AM
lindylanka lindylanka is offline
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Join Date: Sep 2006
Posts: 1,271
15 yr Member
lindylanka lindylanka is offline
Senior Member
 
Join Date: Sep 2006
Posts: 1,271
15 yr Member
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Dear Imad,
Stress, as you will know from this forum, has the habit of making our PD worse, and it can take a little while to settle down. So I am writing really because I can feel your distress....

Ok so there are a few things that you need to sort out in your mind, and sinemet has kind of got a bad press, mostly due to it having been prescribed in an irresponsible way in the past, it is fair to say that these are not aspirin! On the other hand they can bring great benefits too. I have been on them since day one of my diagnosis, and I have kept in control of what I take.

So the first thing you must think if you have started on sinemet is not that they are a bad drug, they are not, and have raised quality of life for many people. Equally though they have caused problems.... this is mostly because the way the drug gets delivered is poor, and can be a bit of a rollercoaster, and even among those who are supposed to know more education on this drug is badly needed.

You say you feel worse, and it would be good if you sort out in your mind how much of this is that you have let go of the idea of doing without them, and how much is physical effect. They do change things, and they do not agree with everyone. So the second thing you need to do is look at those changes and objectively see what is actually happening. You know, are you more sleepy, or are you moving better, or is your speech a little improved......... or balance....

If you do not see any improvements at all then contact the neuro, but give it a little chance on this low dose you are on. A month should show some benefits if they are going to be there......

The third is that you need to let yourself settle on a very low dose before increasing it. At your pace. You are the only person who will objectively be able to understand what is happening to you. From the outside, we know, people do not see us as we are...... So take it slowly.... so a couple of weeks or so before increasing, and give yourself time to reflect on what it is actually doing, and ask family and friends if they can notice things that you can't.

Now none of this is medical advice, I can't help with that, none of us can do the job of a doctor, but it is to do with your attitude, not only to your condition, but to the medication. For some sinemet is something to be feared, they have seen it at it's worst. But for you, you need to respect it. Fearing it will not help you with this. It needs to be like a new friend you are not sure of, but are willing to give a chance........

I get the feeling from your posts that your tremor is the thing that is bothering you most, and this is one of the things that are difficult to treat, at least of the physical symptoms. The wearing off and on of medications can lead to PD symptoms being 'worse' at beginning and end of dose, so you need to look to see if there is an overall improvement. And remember that your brain is sensitive and reacting to something it is not used to, and needs time to adjust. And so do you............

Take everything slowly, it is your body and you know it better than anybody else. And remember it is not a matter of getting hooked on this med, if you need dopamine then it is an essential medication, a replacement, but only at the amount you actually need, and you are the person who can observe how that works. You say yourself that you were stressed by your appointment, and disappointed too, and that increased your tremor. And most doctors now are working to keep patients on as low a maintenance dose as possible, unlike in the past where they were not so cautious.

There is more, much more to PD, but you know that already, and are well prepared by the way you have informed yourself, though all the reading in the world does not match up to the reality of what we actually experience, the changes that a medication can bring.

The only other thing I really wish to add is to keep in touch with your neuro on this, if you really are having a hard time with it, then the neuro should be informed so you can be advised on what to do. If they are undertaking your care then there is also an accompanying responsibility that goes with it...

I wish you all the best with this, take care and let us know how you are getting on with things....

Lindy
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"Thanks for this!" says:
imark3000 (06-23-2010)