13 posts from March, 2017

3 energy-saving tips for people with lupus

Posted March 31st, 2017 by

lupus fatigue tips

Fatigue can be a big deal when you have lupus. About 43 percent of PatientsLikeMe members with systemic lupus erythematosus (SLE) who are tracking fatigue as a symptom say that it’s “severe.” A rough day can feel like “walking through knee-deep water,” notes one member.

Here’s a roundup of energy-saving tips from a few different sources (spoiler alert: routines and planning ahead can help):

  1. A PatientsLikeMe member’s advice: schedule, schedule, schedule. “You can’t schedule too much with lupus because one activity can knock you out,” she says. “I learned to say no in advance to over-scheduling social engagements or things that would keep me out too late or keep me from getting enough sleep.” She also sets alarms and reminders on her phone to keep her on track, including one at 9:30 every night that says, “Time to unwind” – put away electronics, take meds and go to bed.
  1. Hint from a writer with lupus: manage your mornings. Heather Glantz, who has been living with lupus for more than 20 years, says it took her several years to nail down a morning routine that preserves energy for the rest of the day.

lupus fatigue tips

“I try to stay in bed as much as possible before I start my day, so my curling iron, mirror, brush and makeup are all in a drawer next to my bed,” she writes. She has a bench in her shower and stays seated on her bed when she gets dressed. She also avoids clothes that need ironing or have lots of buttons, zippers and buckles – every little bit of energy counts.

  1. More scheduling pointers from the experts at the Lupus Foundation of America:  
    • Balance busy times with periods of rest throughout the day, if possible.
    • Prep meals in advance, whenever you have a bit more energy.
    • Plan ahead for big events like the holidays – shop for gifts throughout the year.
    • Establish good sleep patterns. (PatientsLikeMe bonus tip: iPhones have a new “Bedtime” feature that reminds you when it’s time to hit the hay based on how many hours of sleep you’d like to get – pretty cool.)

Is fatigue a symptom you’re living with? Make sure you’re tracking it so you can see how you’re doing over time. Do you have a routine that helps you manage fatigue? Add a comment on what works for you.

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Parkinson’s podcast: Member Gary talks music and movement with dancer Pamela Quinn

Posted March 30th, 2017 by

In a quest to learn about the benefits of music for people with Parkinson’s disease, we met Pamela Quinn, a professional dancer in New York City who was diagnosed with young-onset PD more than 20 years ago. These days, she teaches thriving dance classes in Brooklyn and Manhattan for people with Parkinson’s (check out her PD Movement Lab class here), and gives talks around the world – from Chicago to Japan – about dancing and moving with PD (catch one of Pam’s inspiring lectures here).

Turns out Team of Advisors member Gary (tupelo), who is living with PD, has known Pam for about three years (they met through their movement specialist, Rachel Saunders-Pullman, M.D.).

Gary and Pam recently sat down for a chat, friend to friend, and let us join in. This is just a snippet:

Pam: “I was in shock because Parkinson’s was not really in my world view at the time – I was a professional dancer, I was a young mother and that was the farthest thing from my thoughts.”

Gary: “So what did you do after finally accepting that you had this chronic progressive disease that would be with you for the rest of your life?”

Pam: “Well, I didn’t accept it…”

Hear the 15-minute podcast

Beyond sharing her reaction to her diagnosis, Pam offered lots of tips for taking elements of dance, breaking down movements and using music to keep on moving (in addition to using prescribed medication, she notes).

“Music is fantastic,” Pam says. “Music is definitely part of my medicinal arsenal. It eases my gait. It propels through space. It helps initiate movement. It has no side effects. It’s cheap. And when they banned it from the New York City Marathon because it gave runners a competitive edge, I knew I was on the right track.”

The PatientsLikeMe community has a lot to say about this topic, too – there are 850+ threads about music and 1,000 threads about dance in the Parkinson’s Disease forum.

Looking for more movement tips and tricks from Pam? She’ll be posting videos and practical pointers for people with PD on her new blog, PamelaQuinn.net.  

A note from Pam: The content of this post and podcast is intended to provide experiential advice from a fellow patient about ways of moving to help manage your PD. It is in no way intended as a substitute for medical consultation. Be sure to check with your healthcare provider before engaging in any new exercise program. Pamela Quinn or PD Movement Lab will not be responsible for any injury or harm you sustain in performing any exercises or following any advice presented here in. 

 

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