Hi Wendy,

Not miraculous, just a combination of good fortune and possibly a high tolerance for disability. The first bit of good fortune is that I have never had a lot of rigidity - practically none, in fact, unless I'm really cold or really tense - then I become quite rigid, particularly in the neck and shoulders, and tremor becomes extremely pronounced. Short of that, however, my "tone" is almost completely normal, and my tremor is minimal. The second bit of good fortune was that my neurologist put me on Mirapex rather than levodopa when I first started medication. The third bit of good fortune was working at the Fox foundation for nine years starting in 2002, a little over a year after I started taking Mirapex. That was fortunate in many ways, but, in this context it meant that I had exposure to a lot of people with Parkinson's – early-stage, late stage, and over time, which is probably the most important factor – I saw how people progressed, I saw what happened to people when they took levodopa. At first, it was like magic – worked perfectly – but over time it began to wear thin, and the tweaking started – first, to smaller doses of levodopa more frequently, then, adding one drug, then another, and then possibly a third, all in the interest of maximizing the increasingly elusive on time. Clearly, however, a losing battle was being fought, one that ended, if it ended, in brain surgery.

It didn't take me long to decide that levodopa was not a drug I wanted to take if I could possibly avoid it. I also knew I had to look at the long-term – I was 36 when I was diagnosed in 2000. Average lifespan in this country is 79 years. That meant I would be managing this disease, I hoped, for at least 43 years. As we are all painfully aware, there are only so many arrows in the medication quivver for Parkinson's – levodopa, dopamine agonists, MAO inhibitors, anticholinergics and amantadine – that's about it. I didn't want to use all my arrows early, and I wanted to avoid spending the rest of my life in a complicated cocktail of drugs that really didn't work.

Oddly, my neurologist started me out at the maximum recommended daily dosage of Mirapex, i.e. 4.5 mg a day. It worked very well for a while – years – maybe five or six years? And then it began to wear thin. She would have increased my dosage of Mirapex, but I want to keep it as low as possible. I agreed to try amantadine briefly, but had a bad reaction to it. I switched to Requip briefly, but it did not work for me. So I went back on Mirapex, which continued to wear thinner and thinner – but I still did not want to increase my dose. Finally, it reached a point where it was so thin that I began to wonder if it was helping me at all. Around this time, I started grad school, and my schedule, which had been 9-to-5 for the last 20 years, and which gave me some continuity in terms of cues to take pills (one before work, one at lunch time, one in the evening) became completely erratic – I'm no good at taking pills on time (another reason levodopa would not be a good choice for me) and without my cues, I began missing pills – lots of them – and eventually gave it up completely about three weeks ago.

I walk like Frankenstein, or at least that's how it feels – I cannot type, I can barely write with pen and paper, and my balance is shot, but all of this was the case before I stopped taking Mirapex as well. I tripped and fell twice, recently, but I tripped and fell many times while I was taking Mirapex. Basically, I have not noticed precipitous worsening of my symptoms since I stopped taking Mirapex.

Do I wish I could walk normally, type again, write with pen and paper, and stand without tipping over, not to mention dance, and all of the other less-essential things I have not been able to do for many years? Sure. I could take levodopa, and it would fix all of those problems – but for how long, and at what long-term cost? My lack of rigidity and dystonia means that I'm comfortable always – in fact, I feel completely normal, I just can't move the way I would like to – I don't feel "sick" in any way. If I did, it would likely be a completely different story. Oh, and I started using a personal trainer, and since I've been doing squats, I seem to have remembered how to get out of a chair on the first try – and this was while off Mirapex – what else might I be able to regain without drugs? So, i am going to stay med free for a while, see how it goes.

I hope that all makes sense.