Hey Doc! Are you reading this?
 

In another thread, I got to wondering if there are any doctors or scientists who are actively engaged in the study of PD who are lurking this forum. I can't fault a medical professional for avoiding posting anything that might seem at all like an opinion. However, it also seems like a great place to learn about PD. It doesn't seem as though it would be a risk to simply let us know you're paying attention. So, are there any of you out there?

You can PM me if you like and I'll simply report the contact without attribution.

This post feels a little like I've sent a radio transmission to the stars in search of extraterrestrial life with the hope that I may actually receive a reply. It also feels a bit like a note in a bottle. I don't expect a response, but it would be so cool to be surprised.

Karl

Docs
 

Hi Karl,
I am with you all the way on this one. I have often had similar thoughts when I see the way we all hold forth on medical matters, using medical terms we may not understand, or interpreting a complex medical article in the way we want it to read. I have often been reading a post that interests me very much, but I felt how useful it would be if there was a doctor monitoring posts, and could break in and say you are not quite correct in......... or you have a good grasp of this subject........ I would be very happy if I had misused a term or misinterpreted a paper, for a Doc to gently say, "Sorry you got it wrong Ron".
By the same token, we could offer the doc or docs the help of all of us who suffer PD. If they wanted a poll on a certain idea etc. or any other way we could help their research.
As you say, "Is there anybody out there???
If so, please reply
Ron

Hi Karl. Some of us do read the forum. More for selfish reasons in my case, as I was diagnosed with PD in 2001. In an effort to learn more about this condition, I stumbled upon the MGH site in 2002. It was immediately apparent that my knowledge of PD (and most other neurological diseases) was minimal at best. Medical school and surgical residency had hardly prepared me for this fight. I am a Podiatrist who specialized in surgery. I still do some consultations, second opinions, and legal work a few hours a week.

I have learned more about Parkinson's Disease from the wonderful people on this forum, who so willingly share their experiences, knowledge, compassion, and set backs, than any other source. My neurologist is great about answering my questions, trying new drug combinations, and keeping up with new concepts in the treatment of the disease. He has only so much time to spend with me. I read the forum daily to keep up with research, new drugs, patient advocacy, and tips on learning to live with PD. It is enjoyable keeping up with the lives of the regular contributors to the forum.

I can see why physicians would choose not to participate in a forum format such as this. It's not that the exchange of information here is inadequate. I find that some patients have had bad experiences with doctors and do not trust them, for good reason. Some of the patients think that all physicians are too busy counting their money to bother spending time with them. Some of the medics are just bad doctors. I believe that the above docs do exist, but they are in the minority. Some of the time patient expectations are unrealistic. Patients have a responsibilty in this game as well. It takes teamwork to make progress in this fight. Informing yourself about PD is a good start. This forum certainly helps most of the individuals who take the time to read it.

Gary

@chilles
 

I know Gary (@chilles) and he is a wonderful doctor and great guy. We periodically have lunch for a 'mini-support group' session.

The next lunch is on me, Gary!

I am a very occasional lurker and am employed as a research psychologist by the PD Society in the UK. Just to make it clear though, I don't do any "research" by reading what's posted here, it's more for my interest and general education about PD. I used to post on "the other site", more in ALS but a little bit in PD.

As you may know, I work with another website for people with PD and spend most of my time on there.

When I've asked colleagues if they lurk on forums, it tends not to be doctors or researchers, but often nurses and non-profit staff that do check out the forums from time to time. The perceived risk for medics is that a.) posting will be the beginning of a potentially time-consuming ongoing commitment and b.) they may be liable if they are interpreted to be giving medical advice.

The perceived risk for non-profit staff is that anything they post may be perceived as the offical "party line" for their charity when in fact it is just personal opinion.

Best wishes

Paul Wicks