Myositis Support Gets Moving on Clubhouse
April 27, 2023 @ 1:00 pm - 2:30 pm EDT
Myositis Support Gets MOVING!
1 PM ET / 12 PM CT / 11 AM MT / 10 AM PT
Join “Myositis Support Gets Moving” on Clubhouse
We welcome ALL impacted by Myositis who are interested and there are NO REQUIREMENTS to participate in this group, other than genuine interest. AND, perhaps most importantly, it is IMPOSSIBLE TO FAIL in this group. We will learn, grow and progress, together. It is not about competition.
This group is truly for all – at all stages of myositis disease progression. And thus, each participant’s plan must be personally crafted and individualized, and in some cases, that may require the input of a physical therapist.
This weekly Clubhouse Room IS:
- a space for encouragement and support as we get moving together;
- a space to talk about and create your own individualized movement and protein intake plan;
- a space to talk about your successes, struggles, and barriers you experience with your plan;
- a space to connect and find a support partner, or find one outside of the group;
- a space where NO ONE FAILS!
This weekly Clubhouse Room is NOT:
- an exercise class;
- a set program/plan – you create your own;
- medical or mental health advice.
What is Myositis Support Gets Moving?
We know from research that movement with myositis is beneficial. As part of our Get Moving and #MyositisMovement program, in this weekly Clubhouse room, we will have personalized, self-crafted individual movement goals and will encourage the use of support partners. By support partner, we mean someone each of us chooses to partner up with and engage with weekly (or more frequently) about our progress, successes, and barriers in working our individualized plans. Our support partners become our partners in problem-solving, joyful successes, and sticktoitiveness! We may choose our support partners from someone within our group or someone we already know as a friend.
Suggested personalized plans will focus on increased movement for health/muscle preservation, muscle building, and protein intake goals so that we are eating enough protein to assist in muscle preservation, building, and loss prevention.
As just a single example, a Clubhouse group member recently shared that they utilize their assistive device to do “laps” of walking in their home while participating in groups. This could easily be or be part of an individual increased movement plan.
To get an accurate assessment of protein intake needs for YOU, use the protein calculator here.
Additionally helpful, is that after you get your results, you can scroll down and see lists of good sources of protein foods and other pertinent information. We suggest going with the protein ranges shown by The American Dietetic Association or The Center for Disease Control and Prevention, which you will see listed.
Our group is all about growing in the direction of engaging in increased movement, at an individual level, to preserve and strengthen muscle and function, while keeping a mindful eye on adequate protein intake. These behaviors can help us navigate the long-term effects of Myositis and prevent unnecessary frailty.
Note that as always, in ALL of our groups, we will also be there for each other to offer support for stressors of all kinds that participants may be experiencing in their lives.
Disclaimer: Nothing provided in the group is medical or mental health advice. Safety first. Talk to your doctor and physical and/or occupational therapist about movement that you can safely do at home. If you have a prescribed eating plan through a Registered Dietician, you should follow that plan. And if you have kidney disease, you likely have a specialized eating plan with lower protein and absolutely need to continue with that. Your treating physician’s prescribed advice is the guidance you need to follow.
Preventing frailty: What Myositis Patients CAN Do
Mary Lewis shares her key takeaways from Dr. Conrad Weihl’s presentation, “Navigating the Long Term Effects of Myositis,” specifically on movement/exercise and nutrition for building and preserving muscle mass and preventing loss of muscle mass.
New to Clubhouse?
Here are some quick steps on how to join Clubhouse, a free, audio-only app.
There are several ways you can get on Clubhouse. Below is just one.
- Click here to join the Myositis Support club. This will open a window where you can click to get the app.
- Or, visit the app store for your device and search for and install “Clubhouse.”
- Open the app and create your profile. Photos are encouraged, and having something in your bio is helpful.
- Once you join the Myositis Support club, you will receive notifications in the app when our rooms open. And, you can also see our schedule of rooms, be notified of pop-up rooms, and more.
- When you join us in a Clubhouse session, you can listen or share. We welcome the entire Myositis Community!
Using Clubhouse on your computer/laptop
There is third-party software, Clubdeck, that you can download and install on your computer to use Clubhouse. Clubdeck is available for Windows and Mac OS. You can only be logged in on one device, however. So if you use Clubdeck, you won’t be able to have Clubhouse on your device running at the same time. Check out Clubdeck here.