When physicians can’t rid patients of their disease, it’s important to remember that they can still help patients live well with it.
Neepa J. Patel, MD
Diseases like Huntington and Parkinson come with built-in difficulty. There are no cures for these conditions, patients are destined to live with them—and they often carry additional symptomatic issues that make those lives harder.
But it’s important for physicians to remember these diagnoses are not death sentences. Neepa J. Patel, MD, a movement disorder specialist with the Henry Ford Health System, wants physicians to keep this in mind when treating these patients. For her, there are still options to help patients have an improved quality of life despite their condition.
To improve the acumen about how physicians should be thinking about the treatment of these patients, Patel spoke with NeurologyLive in an interview.
There are new tools that add value, and at least for people who are really academically focused and movement disorder specialists—I think they embrace them pretty readily. The downstream trickle effect to people who are less academically oriented, who are less aware of the newer things coming down the pipeline, and then going through and down to the general neurologist—that may be a little more problematic.
We have a bunch of new therapies and some relatively old therapies that people have just kind of closed their mind to. I would say with deep brain stimulation (DBS), there is a group of movement disorder specialists and general neurologists who, maybe, came up in an era before DBS and/or in the beginnings of DBS when it was a riskier procedure and have not really embraced its utility in the treatment of Parkinson. They tend to not really encourage patients to seek it out. If anything, maybe, they’d tell them they’re not ready for it when they are entering into the time of their disease where this would be a valuable therapy. It’s not a new therapy by any means—it’s pretty common practice now.
There’s such a diversity to general neurologists. Some trained 20 to 30 years ago, where the approach to these conditions was a lot different from today. The newer trainees get access to upcoming treatments and what’s available. At least in Parkinson, there are a group of neurologists that I’ve seen, who my patients have seen prior to me, who say, “You know, you’re screwed. There’s nothing better we can do, here’s this medication—good luck.” Same with Huntington, you make the diagnosis, and then you say, “OK, this is a pretty terrible condition. Good luck with it.”
I think there is a lot of opportunity in these pretty devastating conditions. In Parkinson less so than in Huntington. One, there are a lot of great symptom-based therapies that can improve the quality of life. Two, thinking about quality of life as an important part of treating the patient. Just because you can’t rid them of their disease doesn’t mean you can’t help them live with it well. There are a lot of new therapies that can be used to help them, even though they’re not necessarily helping to change the disease yet.
There’s a lot coming through the pipeline and it’s hard to keep up with everything. The biggest thing for the general neurologist is that if they’re not familiar and comfortable enough with what’s there, I think they should seek a referral to a specialist, just to have a second set of eyes and ears and some guidance. A lot of movement disorder specialists are too busy to absorb all of the patients with these diagnoses. Sometimes you can get a second opinion consult to get some guidelines on how to take care of your patient for the next couple years, and then you can send them back for another consult to update that. Not being afraid to refer to a specialist would be a really important take-home message.
Transcript edited for clarity.