2 posts tagged “Parkinson’s disease patients”

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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2010 Parkinson’s Awareness Month:
Interview with EnglishTutor

Posted April 5th, 2010 by

What better way to kick-off 2010 Parkinson’s Awareness Month than to bring you “the patient voice.”  At PatientsLikeMe, we believe in getting to know the person, not just the “patient.”  That’s why we interview patients each month in our newsletter to find out more about how they approach life.   We recently featured englishtutor, a three-star member who shared her tips for staying motivated and thoughts about her Parkinson’s disease.  Here’s what she had to say…

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2166 (Amy) What keeps you motivated?
(EnglishTutor) I wish I could say that I am highly motivated and I get on with my day with great interest and gusto, but as we all know, getting into that “Oh,-boy,-I-can’t-wait-to…” zone is not always easy.But to be candid, I am determined to look and feel as good as I can for as long as I can, so I am eager to do those activities (walking, weight training, stretching, dancing) that are so helpful in relieving PD discomfort. I am grateful for the people in my exercise class at the gym who are congenial, funny, supportive, and nice, and we spend our class time together grunting, gossiping, griping, and guffawing. Having fun is truly motivating.I have nine step-grandkids who think I’m pretty cool – and I want them to go on thinking that. So I continue to see the humor wherever I can (which always makes me feel better), keep as up to date as possible with what the grandkids are into (we are all Facebook connected and I can text message on my iPhone with one finger as fast as they can with two thumbs), and continue to dress well and wear makeup even when I’m at the computer all day. (Putting on eye shadow and mascara is a bit of a risk, but I persist.)

My students (see question 3 below) also keep me motivated. Their successes are mine as well, and as every teacher knows, there are few experiences as heady as the moment you realize that a student finally “gets it!”

2166 (Amy) Who do you admire and why?
(EnglishTutor) I admire people who – by sharing their time, wealth, knowledge, experience, and/or expertise – make a genuine and sustained effort to improve the lives of others. Bill and Melinda Gates are at the top of my list.
2166 (Amy) How has your condition affected your work life?
(EnglishTutor) Parkinson’s hasn’t stopped me from my writing and editing work or my teaching. While I can’t really handwrite any more, I can type comfortably enough using an ergonomically designed keyboard, although I’m down from 120 wpm (no errors) to about 70 wpm (with lots of errors). The good news is that using a keyboard gives my stiff fingers a good workout, so at the end of a writing session, they feel fine! I edit PDF documents easily with Adobe Reader.I am an ESL publishing consultant, and because traveling to an office is no longer an option, I attend meetings with clients electronically through face-to-face video chats. I am also teaching English online using Skype and iChat. I have students worldwide, and I still feel very connected. (Thank you, Steve Jobs!)I am the expert in a Literacy Volunteers of America “Ask the Expert” forum for my county. Again, this is all done through the Internet. And in my spare time (what’s that?), I’m writing my memoirs, which my husband’s printing company will publish (or else!).
2166 (Amy) What’s your favorite aspect of PatientsLikeMe?
(EnglishTutor) There are many “favorite aspects,” but the most salient one for me, epitomized by the apt name of this group, is the comforting knowledge that each time I log on, I will meet people who truly know what it feels like to wake up in the morning, struggle out of bed, slowly straighten up, stretch, pause for balance, and take that first step. Somehow just sharing knowledge and experiences with people at all stages of PD tends to lessen the severity of this disease for me and, I hope, for them.
2166 (Amy) Thank you so much for sharing, EnglishTutor!