Symposium Videos Now Available Via DHMC

I’m amazed at how efficient Diane and her colleagues at DHMC have become at communications. Video from the sessions at last month’s Parkinson’s Awareness Day symposium is now available, online and on DVD.

Point your browser to www.dhmc.org/goto/parkinson, then click “Events” on the left side of that page. You’ll see links to the presentation by Dr. David Roberts on deep-brain stimulation surgery; the panel discussion that followed; and Dr. Steven Lee’s presentation on cutting-edge research. You’ll need a high-speed network connection to view these files; or you can get the DVD. Enjoy!

Research in Context: Back to Basics

It’s useful to remember that all research is ultimately aimed at developing therapies that can help people with Parkinson’s, Dr. Steven Lee said during his remarks on research Saturday at DHMC. 
Lee’s remarks, at a Parkinson’s disease symposium attended by more than 200, provided valuable context for understanding the flurry of research news 
Treatments developed through research can be symptomatic (easing the symptoms, without addressing the underlying degeneration); neuroprotective (designed to slow the progression, and thus prolong life); or restorative (reversing the progression and restoring functionaility).
Research itself takes place along a continuum, or “road map,” that ranges from basic discovery, to refining and validating the targets that are uncovered, to pre-clinical testing, “phased” trials in people, and, ultimately, FDA approval applications.
Parkinson’s research can also be categorized as being oriented toward genetics, or divided in two other ways broad categories (or a combination of the two): genetics and cell biology, and environmental influences.
Your correspondent is still working through the research discussed at the event. But one other observation, from a colleague of Lee’s: To be a study participant: do not have to be a patient, and if you are a patient and accepted into study, you can still be a patient.

Debut of the New Hampshire Parkinson’s Center

There’s no better way of celebrating good fortune than to share it with others. So for those of us who helped create The Parkinson’s Center at Dartmouth-Hitchcock Medical Center, yesterday’s symposium was pure joy.

More than 200 people from all corners of New Hampshire and beyond jammed two conference rooms at DHMC for lectures and panel discussions on cutting-edge research and treatment of Parkinson’s disease.

The event was a coming-out party of sorts for The Parkinson’s Center, a fully-fledged Information and Referral Center underwritten by a multi-year grant from the American Parkinson Disease Association.

The APDA sponsored I&R Centers in every New England state except New Hampshire until 2006, when a grant request from DHMC neurologists Steven Lee and David Coffey was officially approved. 

I’ll take credit only for introducing the doctors at DHMC to the APDA program, as a way to bring desperately needed resources to the motion-disorder specialists. 

I remember well an office visit with Dr. Coffey and his pinging computer. The noise was the steady drip of incoming messages. He had cleared the in-box before our appointment; by the end of our hour, he had received more than 30 messages — refill requests, call-backs from patients, notes from students and colleagues. 

The APDA grant covers roughly 50 percent of the cost of a full-time professional, such as a registered nurse or social worker. The coordinator works from an office in the neurology section, providing information and referrals to patients, caregivers, and allied health professionals.

Part of the center’s outreach effort is aimed at creating and sustaining local support groups. As the network of local groups expands, members of those groups eventually create an APDA-affiliated state chapter. The chapter then organizes fund-raisers to benefit APDA programs, such as the network of centers and a full spectrum of scientific research.

At the center level, the grant doesn’t provide direct clinical relief to busy doctors. It provides complimentary relief, by creating communities that help its members learn how to cope in the long intervals between doctor visits. 

A doctor can adjust medication; he can’t tell you where to buy that spikey thing that provides better traction for your cane while walking across ice. A doctor can write a letter for your disability claim; she can’t tell you how to buttress your case if your claim is denied in the first round.

That’s why yesterday’s event was such a thrill. It was truly exciting to be present at the launch of this hope-filled enterprise, listening to an easily-comprehended discussion of surgical methods and a comprehensive survey of the latest research, in the company of a couple of hundred of fellow travelers.