Originally Posted by Muireann

Moondaughter,

That's an incredible story and thank you for coming back with a reply to my question. It sounds like you were making a lot of progress in your own recovery when the competing needs of your partner in an extreme situation mitigated against the self-care you required. What a sacrifice to be called upon to make. And yet we are all in this dilemma to a greater or lesser extent, struggling to balance self-care with the care of others. That's the crux of the matter, as far as I am concerned. Resources and capacities are always limited. More than one family member may be ill. Two breadwinners may be felled at the same time. Children have to be put through education. Mortgages have to be serviced. Elderly parents looked after.

The story of your friend who recovered, seems to bear out my point about the need to get off the PD radar if you want to stay well. Another thing that occurs to me is that the level of self-care involved in order to recover, requires a diversion of energy away from the pursuit of holding down a job in order to pursue dietary, exercise and physio regimes. Many people get caught up in the bind and circular logic of going on PD meds in order to keep a job so that one can hold onto job-related health insurance in order to pay for those same meds, not to mention simply needing to earn a living and be part of public life.

People often argue that alternative remedies to drugs don't work, but this is an unfair comparison. Health insurance rarely covers non-drug remedies to the same extent as drug remedies. I find a once a week massage hugely beneficial. What might I be like if I could have it 3 times a week, 52 weeks a year? We will never know, because a clinical trial for such would never be funded and my health insurance covers half the cost of ten physio appts per year. My national health system will cover 100% of the cost of the drugs I don't want to take. I spoke to a GP with PD once who said the real cost of his drugs to the State came to 186,000 euro just for the year before his DBS which then cost about 50,000. I think the State should risk some money on alternative paths to recovery.

It is quite possible that some of Coleman's people who have recovered, or others around the world, retain a low profile because the time, effort and expense they had to invest in repairing themselves, meant they had to give up jobs and go on Disability. Once recovered, they may not want to be undiagnosed for fear that their symptoms will return and then they are viewed as disingenuous malingerers by social welfare systems that do not comprehend such a trajectory. You cannot go on and off Disability, willy nilly, for 'incurable' diseases. Coleman might love to put his recovered patients on display, but maybe this would not be in their interests?

All journeys to recovery are individual, as Moondaughter's stories about herself, her partner and her friend with PD so beautifully illustrate. Yet it seems that there is one big fork in the road to recovery for a lot of people:

a) strive to maintain a job or career [usually requires the taking of meds], but only buys a few more years of employment at best, or,

b) take time out, get off the treadmill, suffer financial impoverishment, but retain some autonomy over the decision to medicate and hopefully buy time to bootstrap oneself out of the PD state before one is forced to go down the drug route - but you better make very good use of this time to sort out your problems.