Quote:
Originally Posted by johnt
Issi_8,
Welcome to the forum.
It sounds like you're doing well for someone 10 years after diagnosis. When you say you lead a "normal life", do you have any symptoms? Would you pass for a healthy person even when you are at the end of a dose?
Regarding drugs, it seems to me that you are on a typical regime. A good measure of the power of the drugs you take is "levodopa equivalent dose". This adds up all the drugs you take in a day and gives a single number estimating the amount of levodopa (taken with carbidopa) that would have the same effect. In your case, I would estimate an LED of 640mg, coming from ropinirole (240), sinemet (300), entacapone (100). In comparison, I'm also 10 years after diagnosis, and my LED is 820mg.
Before making any changes, I'd advise measuring your current symptoms. I find the side-to-side tap test useful. This times you repeatedly typing, using just one finger, q followed by p. There's an on-line version of this at:
As you do the test you learn to do it better. So, do it at least 10 times before using the results.
You can see whether your drugs are having an effect without changing your dose. All your drugs act only for a few hours. So, when you get up they should be mostly clear from your system. For a PwP one would expect that after you take the pills their effect will gradually grow, then plateau, then decline. To see if this is the case, take a reading every 15 minutes for at least 3 hours. See:
John
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Hi John,
Thank you for taking an interest in my case. Yes I do lead a normal life. The only symptom or side effect I have is dystonia in the form of toe curl mainly in my left foot, but sometimes in my right foot and it only appears when I am due for another dose of my drugs, like 3 times a day and if I am quick enough taking my drugs, I don't get it at all. I have NO tremor, no slowness of movement, no loss of balance, never have I frozen, or have a blank face, my speech and writing has not changed and I smell all the spring flowers that are in my garden here at the moment. Spring here in New Zealand.
So, my day is normal, yesterday I got up at 4 am, which I do every day, I take my first dose of meds at about 5.30 to 6am. Then do housework, I go to work for two hours most days and clean peoples houses, then come home, make lunch then spend the rest of the day in my huge garden, yesterday I mowed the lawns which takes about 3 hours. Then inside to cook tea.
You see my dilemma and why I am questioning my diagnosis. I have taken your test, so results after 5 times practising at 4 am this morning with no drugs taken yet are left - 29.83, right - 33.55. Drugs taken 5.30am, next test 6am left - 32.02, right - 35.56. I think these results are quite high?? I had no trouble with my co-ordination.
Kind Regards Janette