[lindylanka]

This has been provoked in part by a lovely e-mail I received from one of this forum's members, enquiring about how he thought the election results here in the UK would affect anglo-american relations. Well, for obvious reasons, right here in the UK, on election day our minds have been much more pre-occupied with sorting out how to vote to get the government we want with a three-horse race, and politicians from all sides under huge criticism for the way they conduct themselves. So relationships with another continent haven't been much on the agenda recently, though they have of course been colouring our view - and it is not just about one continent, either, but right now everything except our patch seems unclear, and until we get those all important results and settle down an learn to live with them the broader view is not likely to emerge. None of us know what that will be or whether we really will get a change from what we thought we needed, to what we really need....

Over the last few days I have really been struggling with a few things, the main one being, that clearly from everything I am experiencing right now, I am not doing that good. This is not because my PD is severe, it is not, but rather because I have come to the point where I have to accept that I am on a slow downward slide, and the meds I have are not going to make me any better than I am now. So for the first time really, I am starting to truly share the frustration of the people who post here who reached that point quite a while ago, who were promised all sorts, and the promises never materialized.

My foray into the world of generously spaced appointments and this week gave me a reminder of what to expect and what not to expect.

So I did a mental exercise to try and understand why I frankly have felt so ------ off since seeing my neuro, who I actually respect, and like. I turned everything on it's head and tried to put myself in his shoes.

As much as we are locked into a set pattern of medical care, treatment and provision, so are they. We are there, with our expectations and our need, which they are unable to meet, because they are at the same time the experts and students of the brain. I wonder how many of PwP see a news item about a new treatment, or DBS, or anything PD-related, and take that to the clinic, hoping they will be among those to get the carefully advertised and promoted pot of gold. And how much dread the neuro, MDS, GP will have of patient questions, or even demands. When I say patient, I don't just mean the informed ones, I also mean the ones how have just seen something on the TV, and whose family and friends are now convinced that there is a cure, a magic bullet, a miracle waiting for the person they love.

Our doctors are not making such big promises these days, the pressures on them to perform are so great, and the medicine is not. The people who make the promises are businessmen. So our doctors are really no better off than we are. Stuck in a place where nothing changes, or or if anything does, it is at a pace slower than our unmedicated selves.

Different continents, different points of view.

So did we make our own monster, inadvertently, through our expectations, of medicine, science? The dragon on a different continent, protecting a pearl we want, and need. We wanted a cure, we wanted it soon, and now everything gets channeled into it while we wait, and wait some more. And did our doctors and scientists create a different kind of monster out of us, hungry and demanding, pill-swallowing? And the continent of money - well we see it's monsters from a distance. Even less visible the continent of commodities, where our needs are nothing but raw materials, beans, and wires, and plastic........ we hardly get a glimpse...... it's all kept opaque and sanitized.

As Fiona suggested, we could do with teams of people who work with us, with none less equal than the others, and that includes the patient.

Where the aim is to keep us moving, not just when we have an adverse happening, but from the beginning of our treatment, as truly preventative medicine.......

Some will say this would cost a fortune. I would argue that a immense fortune has already got us only to this place, where our options start to run out, and the majority of us have pills and little else. It is more cost effective to keep us functioning.

Perhaps we should, collectively, begin to outline what we need, and start communicating it effectively. Most of the documents that set these things out come from health care workers, not patients. If we were to set our our needs clearly, sensibly, not as an agenda, but in a way that is offering solutions, perhaps this could help provide a bridge, a means for change.

Perhaps that patient conference that was suggested in a different thread REALLY is something we need to be actively working towards.

Deconstructing the monster is PART 2!

Lindy

[pkell]

The monster may be of our own making, but you will never get them to admit that. I believe you are right, having grown up very much unwilling to challenge authority, and certainly never arguing medicine with a physician, I had to grow very gray before I realized, and actually believed, that I could read as well as they could.

We must, as a unit, demand (politely) to be heard and further to be listened to. If none of us backs down, if we insist on saying our piece we will not continue to appear as lone difficult patients, but by raising the subjects we want addressed in multiple arenas by multiple individuals all over the world, what we are saying will take on a new character. The character of a concern of PwP, not just the complaint of a patient. There really is power in numbers and power is what will make the difference.

If they are stuck in a rut and we are stuck in a rut, then our focus needs to be unsticking both of us for our ultimate mutual benefit.