[cochrankat]

A thought spurred by seeing how the ball on ECT/PD fell between the psychiatrists and the neurologists:

The longer I live with PD, the more I think that to term it a "movement disorder" is limiting and misleading. PD affects everything, including cognition and mood. The sooner we all admit that, the sooner we can break out of the box our fragmented, competitive system of health care and medical specialties has put us in.

Kathleen

[Conductor71]

Originally Posted by cochrankat

A thought spurred by seeing how the ball on ECT/PD fell between the psychiatrists and the neurologists:

The longer I live with PD, the more I think that to term it a "movement disorder" is limiting and misleading. PD affects everything, including cognition and mood. The sooner we all admit that, the sooner we can break out of the box our fragmented, competitive system of health care and medical specialties has put us in.

Kathleen

Kathleen,

Good point. I came to this conclusion as well just after researching and realizing that we all experience it so differently and it does include insidious effects on our psyche as the disease slowly takes over. I see it more as a spectrum disorder.

As far as it translating to health care reform...hmmn. Wouldn't hold my breath- if you haven't already, see our long thread on health care reform bill. We cover just how our needs are different than what is currently provided for under our narrow-minded Western model of medicine. Where is the coverage for supplements, yoga, exercise, etc.?

On a positive note, we have a major medical research university that "gets it". The University of Maryland Medical Center offers patients a holistic approach to care including access to occupational therapy, psychotherapy, and they even have the nerve to acknowledge complementary therapies in the form of herbs and supplements. Take that, FDA!

Laura

[reverett123]

http://www.pdf.org/en/fall06_PD_More...ement_Disorder

That should take you to the Fall, 2006, newsletter of the Parkinson's Disease Foundation and a terrific piece by Dr. William Langston, one of the top researchers on PD. He has reached some of the same conclusions.

[cochrankat]

Originally Posted by Conductor71

Kathleen,

Good point. I came to this conclusion as well just after researching and realizing that we all experience it so differently and it does include insidious effects on our psyche as the disease slowly takes over. I see it more as a spectrum disorder.

As far as it translating to health care reform...hmmn. Wouldn't hold my breath- if you haven't already, see our long thread on health care reform bill. We cover just how our needs are different than what is currently provided for under our narrow-minded Western model of medicine. Where is the coverage for supplements, yoga, exercise, etc.?

On a positive note, we have a major medical research university that "gets it". The University of Maryland Medical Center offers patients a holistic approach to care including access to occupational therapy, psychotherapy, and they even have the nerve to acknowledge complementary therapies in the form of herbs and supplements. Take that, FDA!

Laura

Thanks for the link! Great site.

Kathleen

[cochrankat]

Originally Posted by reverett123

http://www.pdf.org/en/fall06_PD_More...ement_Disorder

That should take you to the Fall, 2006, newsletter of the Parkinson's Disease Foundation and a terrific piece by Dr. William Langston, one of the top researchers on PD. He has reached some of the same conclusions.

Wow. Imagine being treated by a multidisciplinary team. Wouldn't that be great...

Thanks for this great piece.

Kathleen

[indigogo]

Laura Marsh, psychiatrist at Johns Hopkins, has long defined PD as a neuropsychiatric disorder; Bill Langston is a visionary; both are great champions for the patient.

There are 3 holistic PD clinics in the US that provide full spectrum patient care: Booth Gardner Center in Kirkland, WA; the Strothers Clinic in Minnesota; and the clinic run by Alex Dirocco in NYC. The addition of what is going on at Maryland is new to me - thanks, Laura - I'll check it out - must be due to the recent Sergey Brin endowment, do you know?

Anywho, there's lots of innovative stuff going on in PD care around the country - it may be necessary for patients to connect the dots. My doctor at Booth Gardner is always looking for ways to spread the word! Doing my part, here is her article in the Summer '07 PDF newsletter on Implementing the Team Approach to PD, and how to build your own team in case you aren't lucky enough to live near one of these clinics (it's on page 4) http://www.pdf.org/pdf/PDF_Summer_News_07.pdf

[paula_w]

we are asked to give input on this :

what Dan Hoch from Braintalk, a neurologist, is going to form with the AAN...

To help us, we need to be provided with specifics about the patient posters.

there's [AAN] a group that doesn't welcome us much. i'm going to give it some thought and reply to Dan h. read about it here from Chemar..p

http://neurotalk.psychcentral.com/thread97228.html

well that's good carey!

p

[indigogo]

Paula - what's the coincidence? not sure what you mean .........

[paula_w]

It's happening just as we're researching braintalk; it's where much happened so maybe a link to the forums or some type of ackknowledgement that we exist and are active would be possible.

Originally Posted by indigogo

Paula - what's the coincidence? not sure what you mean .........

[Jaye]

I'm sorry to say that Dr. Laura Marsh has left Johns Hopkins to become Director of Psychiatry at the large VA hospital in Houston. I last saw her towards the end of July when hubby and I went in to take part in the longitudinal study we've been participating in for ten years.

I haven't heard of this program at UMd either, but I do see a therapist, a PhD in neuropsychology who specializes in PD, at his office in a room right inside a team of neurologists' movement disorder practice. I have mentioned him before on this forum. His website is at http://www.yourparkinsonsfamily.com and was originally intended for partners but... well read Dr. Paul Short's blog and you'll get the idea.

It's my understanding that the OSHU clinic in Portland, OR, in cooperation with the support group structure there, has become a lot more holistic. With Jay Nutt, MD, as director I believe it will become more so. I'm told he's one MDS who Gets It. There are few who even acknowledge the global brain symptoms, much less treat people with any care for their complex predicament. (The previous sentence is the brief version of a long rant. Be glad I deleted the rant.)

Thanks for all the links, everyone. I'll try to get to them soon.

Everybody get your Vitamin D level checked.

Jaye