6 posts tagged “Scale”

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 with trekking poles 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.

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ORE Researcher Series: Tamara Kear is listening to kidney patients

Posted June 25th, 2015 by

Over the next few months, you’ll meet a few Open Research Exchange (ORE) researchers, and first up is Tamara Kear, PhD., R.N., CNS, CNN. She has over 20 years’ practice as a nurse caring for patients with kidney disease. Her research is focused on hypertension, one of the factors that can lead to a person developing kidney disease.

Tamara has developed a scale for healthcare providers that helps them learn how well a patient is doing at home and identify barriers they are experiencing in managing their hypertension. Her goal is to develop a better tool. In her video, she explains her ORE research and her philosophy that patients should be “not just informers for researchers, but actually the researchers themselves.”

What exactly is the ORE? PatientsLikeMe’s ORE platform gives patients the chance to not only check an answer box, but also share their feedback on each question in a researcher’s health measure. They can tell our research partners what makes sense, what doesn’t, and how relevant the overall tool is to their condition. It’s all about collaborating with patients as partners to create the most effective tools for measuring disease.

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