Fiona,

I so did not mean to offend with the finance comments. In retrospect, I was afraid that might happen. I am just thinking that travel aside; it is in fact a full time endeavor to stay ahead of the curve with this condition. We can't entrust our well-being over to doctors; the research alone is time consuming not to mention the time and energy we give to even finding doctors and resources. Then factor in how playing around with meds can leave you incapacitated and already you are expending an inordinate amount of time on your health.

I was actually thinking more of Max's posts on switching over to mucuna and his yoga regime; his daily routine sounds intense. He is doing so much better, but honestly, it sounds like full time work. It's worth it, but I am just saying that we aren't all in a position to do so. I think of YO men who must still provide for their families. Me, I am essentially a single mom. Since we're all at different places in life in terms of finances and free time, wouldn't it be great if we could take you and Max as role models of a sort and have the whole idea of healing ourselves adapted as a standard in treatment that we could expect and that our insurance companies would support. This way we might all benefit at whatever amount of time or energy we can put into it. I meant this as a compliment to you both. Your success stories serve as an inspiration and proof that it can be done.

I'd say that you both have shown improvement beyond standard medical "best practice" of DBS. Honestly, in reading Max's story and in your recent experience, wouldn't it cost less for an insurance company to support a program of natural healing even involving travel for alternative treatments than it would for DBS and all its upkeep? Certainly the natural approach is more empowering for the patient and looks like it may have very similar results if were to compare using the UPDRS. In all seriousness, I would love to see something like this in clinical trial.

On a more personal note...maybe I sound bitter because I have spent quite a bit on lawyers this year just trying to retain my livelihood; I now face losing my home. I still teach...barely. My PD worsened due to pregnancy, and I don't have the stamina to do it full time anymore. I lost this in the course of one year. After my pregnancy, I was thrilled to even be able to teach part-time. My district is known for targeting employees with high insurance premiums and "treating them differently". I also am not vested in the state retirement system and because I am now half time I have no disability insurance. These past two years have been a rude awakening. Could I look for other work? Likely, I'll have to but then face the pressure of "hiding it" when frankly, I don't think I really can anymore. In other words, finance is weighing heavily on me these days, so this may be why I came across as critical when that was not my intention at all.

This is also why I am a bit bitter with a doctor giving me an overly sanguine look at my future with PD; she in fact also told me that pregnancy would in no way worsen my condition. While I didn't have a doctor telling me I would be competing in triathalons or in a wheelchair (can't believe that is what you were told- yeesh), I had one who needed to be willing to conduct a literature search or at least admit she did not have an answer for me.

Anyway, I am long-winded as usual, but essentially saying that I think we need to revolutionize the way this is treated by looking at what we can do to help ourselves make the most of what little dopamine we have left instead of merely trying to synthetically replace it every few hours.