4 posts tagged “connect”

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

Posted 3 months ago 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.

Share this post on Twitter and help spread the word.


Spoons and forks – not just for summer picnics

Posted July 17th, 2015 by

There are a ton of activities to do during the “lazy, hazy, crazy days of summer.” And whether you’re living with a chronic condition or not, it’s good to learn how to manage your energy. Christine Miserandino, who lives with lupus, created her “Spoon Theory” as a way to think about how much energy we have available.

Here’s how it works:
Pretend that you have a handful of spoons that represent all the energy you have for the day. Depending on your health, you’ll need to use some of those spoons to get dressed, make a pot of coffee or take care of your pet. Once you’ve done the daily ‘essential’ activities, you’ll know how much energy you’ve got left for other things, like going for walk on a summer evening.

The great thing about the Spoon Theory is that it works for everyone – you choose how many spoons to start with each day and know how many you have left. It’s also an easy way to communicate with others how you’re feeling at any given time. Maybe you’re not feeling like that hike in the woods. It may be hard to say ‘no,’ but easier to say, “I only have one spoon left today, and I’m saving it for cooking dinner tonight.”

Flipping it around, Jackie, who lives with multiple sclerosis (MS), came up with her “Fork Theory” as a way to communicate her pain points to family and friends. Jackie explained the theory to others in her PatientsLikeMe community:

“Forks are the opposite of spoons, you want to get rid of them. But knowing how many forks you have at any given time can help those around you understand what’s going on. For some of us, these forks take the form of chronic pain or fatigue, but for others, they may be simply a lack of motivation for the occasional family dinner (just kidding, Aunt Helen 🙂 ).”

Support that sustains
Whatever type of cutlery makes sense to you, a summer day may offer you more chances to eat well, enjoy some exercise a bit or spend time relaxing at the beach.

If you need someone to talk to about your health condition(s) and how you are using your spoons or forks today, there are more than 350,000 PatientsLikeMe members discussing more than 2,500 health conditions. Summer wherever, but summer together. Join PatientsLikeMe and discover a place to learn and connect.

Share this post on Twitter and help spread the word.