Laura writes:
"I am fed up. I can deal with this disorder, but I can no longer hack the medical "professionals" who just wash their hands of us. I can give in to the sense of physical helplessness but not the psychological one. Do doctors really expect us to passively accept all this and not probe or push them farther to actually do something meaningful for a change like actually condone; for example, low -dose Naltrexone. I just cannot sit idly by on the sidelines while other people and this disease run the course for me. If any of our doctors had this, can you see them kicking back with DBS and the status quo?"

It seems common that once a person is diagnosed with PD:
- doctors automatically assume there is no cure (at least at present) for this person;
- treatment is limited to symptom reduction (stiffness, tremor etc.);
- treatment is limited to officially sanctioned therapies (levodopa, DBS etc.).

The problem with this approach is that at a number of places it handles opinion as fact and, wrongly, assumes the most likely option is the best one to take.

A doctor can reasonably claim to have done a good job if he or she had, in a timely and sympathetic way, made the same diagnosis as experts in the field. In other words, the diagnosis is often more to do with matching the opinion of doctors than finding out what is really wrong with the patient. The patient has been given the "expert" diagnosis, but it may not be the correct one.

At this stage what is uncertain is often treated as certain: the diagnosis is probably correct, but not certainly. But now, the patient is officially deemed to have PD and PD has no known cure, therefore, the patient cannot be cured, therefore look no further. From the patient's perspective things are different.

Not only is it uncertain as to what Parkinson's is (I go for the multiple variants view), it's uncertain how best to treat these variants. This raises another problem: risk is asymmetrically distributed between the patient and the doctor. The patient can see the PD progressing and is prepared to take some risks trying different treatments. The doctor is at risk if the guidelines are not followed.

John