[John Robinson]

Hi Ron,

My case was a little different.  My main symptom is loss of left hand dexterity.  I don’t have a resting tremor.  I do have a tremor while I am rotating my hand.  I do have a limp when I walk.

My neurologist suggested I start carbidopa/levodopa in August 2021 so I started taking it.  After a month of taking it I called back and said that I was not sure if it was helping.  I asked if I could wean off the medication.  So, I weaned of over 2 or 3 days.  The next day after I had completely stopped, I woke up in the middle of the night with a panic attack, terror, a feeling of doom and gloom.  I went back on the medication and tried to wean off more slowly over a couple of months. I still woke up at 2 or 3 am and had to take something to help me sleep.  After I was totally off, I had some good days and some bad days(nausea til noon, lack of mental energy and still not sleeping well).    The bad days became more frequent so I decided to restart the medication.

I am doing fine on the medication now and the tremor when I rotate my hand is better.

However, my quality of life was good before I ever started the medication.  In my case I wish I had not started the medication until my quality of life was impacted.   One thing I think the neurologist should as is “How is your quality of life?”  If the answer is “good”, then I don’t think the medication should be started yet.