Several things came together today that, IMHO, is a good example of why there needs to be a patient voice in the research world.

First, how many of you can crawl when you can't walk? We've never talked about it, but I bet that I'm not alone. The question is why? Is it as the study below speculates and that it is simply that the ability to walk is lost before the ability to crawl? If a researcher cared to listen, I would point out that 1) The ability to walk is still there when meds are working; 2) Dropping to all fours instantly frees up my entire stiffened up old body, including arms and legs, so the effect is not limited to walking; 3) My legs work just fine and do so immediately; 4) The sensation is one of relief from a struggle that instantly is all but gone. I could think of more if anyone cared to listen. But I've already said enough to show that the current wisdom of "poor guy unable to move because he has no dopamine" is dead wrong as is "unable to initiate movement" or "dead dopamine producing neurons" and goodness knows what else. Heck, I just threw the neurology textbook out the window, but they'll never know - because I'm JUST a patient.

What set me off was that of the hundeds of thousands of studies and the countless dollars spent, one blasted study had even looked at the fact that we can crawl and it has missed the point and then dared to dismiss such an important observation as one of our "tricks". It's not a trick, it's an anomaly! And that is the most important thing in science, the "that's odd...." moment.

<grump!>

1: Neurologia. 2004 Mar;19(2):77-9.

[Freezing of gait or freezing of quadruped gait]

[Article in Spanish]

García Ruiz PJ, Rojo A, Sanchez Bernardos V, Romero A, Cubo E, Aguilar M.

Servicios de Neurología, Fundación Jiménez Díaz, Madrid, Spain. pgarcia@fjd.es

Parkinson's disease (PD) is frequently associated with freezing of gait. Patients
with advanced PD learn to use tricks to relieve freezing of gait. Recently one of
our patients informed us that he could overcome freezing of gait by crawling.
Since crawling is a sort of quadruped gait that humans develop transiently, we
wondered whether quadruped gait is preserved in PD.We recruited 16 patients with
PD who had frequent and disabling freezing of gait. Under experimental
conditions, after 12 hours without medication, seven patients developed biped
freezing of gait. Of these seven patients, only two patients (the patients with
the most severe freezing) also developed quadruped freezing of gait. This
experiment suggests that bipedal gait is affected early in PD, while quadruped
gait is preserved until late in this disease.


PMID: 14986185 [PubMed - indexed for MEDLINE]