Myositis Support Gets Moving on Clubhouse
September 29 @ 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.
Not yet on Clubhouse?
Clubhouse is a free audio-only app available for smartphones and some tablets, including the iPad.
You can join our club, your Myositis family, here: Myositis Support Club
- install the Clubhouse app;
- create your free account with your mobile number;
- add something to your bio (this is how other people can find you);
- Be sure to join the Myositis Support Club. Our Clubhouse rooms are only available to those who are members of the club.
Using Clubhouse on your computer/laptop
If you prefer using your desktop/laptop computer, there is third-party software called Clubdeck which is available for Windows and Mac OS.