4 posts tagged “Research study”

Spill the beans: How do caffeine and Parkinson’s disease interact?

Posted May 14th, 2018 by

Do you crave that cup (or more) of joe each day? Or a spot of tea or chunk of chocolate? Research about caffeine and Parkinson’s disease (PD) has been all over the map. What have studies shown? And what’s the PatientsLikeMe community’s take on caffeine and its effects when you’re living with PD? Take a peek.

Mixed findings on symptom relief

Past research showing that moderate caffeine intake may help protect against PD (particularly in men) has turned on a steady drip of studies about other caffeine/PD connections or interactions.

A small-scale 2012 study published in the journal Neurology found that moderate amounts of caffeine may help improve motor symptoms of Parkinson’s disease. But the study was relatively short (three weeks) and small (61 patients), so researchers concluded that there should be a larger long-term trial on caffeine and PD.

The lead researcher, Ronald Postuma, M.D. (an associate professor of neurology at McGill University Health Center in Montreal), conducted a follow-up study on a larger scale — involving 121 participants for up to 18 months — and the results of the September 2017 study did not uphold the findings of the 2012 study.

“Caffeine made no difference to Parkinson’s,” he says, noting that the results of the 2012 study made a bigger splash than intended. “The news media picked it up, and all of a sudden I’ve got all of my patients drinking coffee, which I never intended,” Dr. Postuma tells WebMD. “We always have to verify things.”

New findings on caffeine as a biomarker

Another recent caffeine/PD study that’s created a buzz is one published in January 2018 in Neurology that shows caffeine could be a biomarker of PD, meaning it could be a possible predictor or diagnostic blood test down the road, if more research pans out.

In the Japanese study involving 139 people (men and women, both with and without PD), those with Parkinson’s disease had significantly lower levels of caffeine and related byproducts in their blood, even when consuming the same amount of caffeine (the equivalent of about two cups of coffee per day).

But the study also had limitations, including the fact that people with severe PD weren’t a part of the research, and all participants were taking PD medication (so these drugs could possibly affect caffeine metabolism).

The Michael J. Fox Foundation called the study’s findings “very intriguing” and is reportedly working on a “rapid replication” of the research.

What’s the takeaway from all this research?

The Parkinson’s Foundation sums it up like this: “The bottom line from all of the available research is that the epidemiologic link between caffeine and a potential lower risk of developing Parkinson’s disease is not likely related to a symptomatic effect. If you have Parkinson’s, drinking coffee will not worsen your symptoms, in most cases… Consumption of coffee or tea seems to reduce the risk of developing Parkinson’s. Once you have been diagnosed with Parkinson’s disease, no matter how much time you spend in a coffee shop, you can no longer alter your risk profile.”

Among the general population, drinking coffee appears to have at least a few health perks. Nutrition experts at Harvard University say that, in addition to lowering the risk for PD, drinking coffee appears to protect against type 2 diabetes and liver cancer, and it’s generally a good beverage choice for healthy people (as long as it’s not loaded with fat/cream and sugar, interrupting sleep, or causing tremors — which can occur even in healthy people who consume too much caffeine).

Keep in mind that caffeine levels vary by brand and type of drink (for example, espresso and mocha drinks contain more). Talk with your health care team about your caffeine intake, timing with medications, and any symptoms you think may be associated with it.

Join PatientsLikeMe today to connect with others on topics like this (logged-in members can access the following links)! See what members with PD are saying about:

Some members have found that caffeine makes their tremors worse, while others say they’re not sure how it affects them (and besides, they’ll never give up their “morning joe”). A few have mentioned that they’ve tweaked their routine — having a bit of coffee only after they’ve taken their medication.

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Confessions of a research study addict: “It’s powerful to use a devastating diagnosis for good.”

Posted March 14th, 2018 by

Elizabeth is a member of the 2018 Team of Advisors living with MS and a self-described research addict. Here’s what she had to say about her experience contributing to research and why “it’s powerful to use a devastating diagnosis for good.”

I’ve always been a sucker for a focus group. Give me some free pizza and I’ll tell you everything you want to know about your product, service or ad campaign. In fact, I got into advertising as a career because I liked the research part of it so much.

So, when I was diagnosed with multiple sclerosis, I applied that same mindset to my disease approach.

The first MS research study I did came a few months after my doctor prescribed Avonex. For someone with a virulent needle phobia, a weekly intramuscular shot sounded almost worse than having MS. So I spent the next few months imagining myself on a beach—right before I tried in vain to push an inch-and-a-half needle into my leg. The meditation didn’t quite take, but my passion for research didn’t waiver (thank goodness for a husband who didn’t mind giving shots and, later, the Avonex quick inject pen!)

Next came the EPIC Study — “an intensive observational study of over 500 people with MS who have been carefully studied since 2004.” I even got my parents involved as a control group. Once a year for twelve years I’ve been getting evoked potentials, an eye screening, a hand-eye coordination exam, and a bonus MRI — I also play a dreaded number addition memory game. I’m proud to be part of this study—last week I was lucky enough to see some of the preliminary findings that I contributed to (hint: there is some AMAZING stuff happening in the MS therapy world.)

I made a brief, but unsuccessful, journey into a Copaxone clinical trial where I had the honor of getting lipoatrophy faster than any patient my doc has ever seen. My case even made it into a medical journal. And while the dents in my thighs never let me forget this one, I like to think my experience helped someone else avoid their own unseemly dents.

My research obsession doesn’t stop with MS. I fit a patient profile for a breast screening study to determine if mammograms alone or with a DNA test can improve outcomes for detecting early cancers. I was happy to be a part of this work, plus I learned I don’t have a carrier gene—a nice bonus of helping out.

Yes, health studies are a bit addictive to me. I get a thrill from trying a new approach or having my data contribute to a new protocol. And while there are different levels of research (especially when it comes to drug trials), every observation, every data point moves our collective understanding about MS and chronic illness forward. I’m grateful to play a role in that; it’s powerful to use a devastating diagnosis for good.

So, what’s next? The other day I heard about an MS gut microbiome study. The details are…a little gross. But sign me up!

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