Quote:
Originally Posted by moondaughter
Later I met him at the acupuncturist office where i was getting treatment (and doing quite well ) , At that time he still had a tremor in his right(?) hand but the rest of his sx were gone. Last I heard from him he just bought a motorcycle and new home! He said he had a ways to go on the tremor but everything else was gone.
I only talked with him on the phone a few times and met in person once but i w ent to the same acupuncturist whom i have a deep and abiding respect for. He had no agenda to prove anything to anyone and at first was willing to share his story buut after being deluged with requests he felt inclined to just move forward - why set himself up for an onslaught...and it was an onslaught including hundreds of emails - i think he believed healing is an individual journey and unique to each individual. i remember him telling me that financial well being was possible too - he had a glint in his eye -i assumed that he was suggesting that welll being (of all kinds) is first and foremost an emotional journey....this is why healing is so individual because how we manage our thoughts and reactions in our life cocreates the template from which we experience our world. not to say that we are in control - this is a discussion about fate and destiny - how we are and are not in control!
for the first decade and a couple years more I travelled tens of thousands of miles for various treatments. And they helped - my condition plummeted after my husband suffered a stroke and req uired intense full time caregiving which I am still doing however he has improved a LOT. and I can attest to how after his stroke he almost died from taking a huge cocktail of drugs and slowly through time has regained his health after going off all but a blood thinner and muscle relaxant.
so thats my story and I'm stickin to it....  |
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.