Preventing frailty: What Myositis Patients CAN Do

My favorite presentation from the 2021 TMA International Annual Patient Conference was Dr. Conrad (Chris) Weihl’s “Navigating the Long Term Effects of Myositis.” Specifically, it was Dr. Weihl’s discussion around movement/exercise and nutrition for building and preserving muscle mass and preventing loss of muscle mass, and perhaps, most importantly, his strong patient-centric approach to the topic, and encouragement to patients to engage and advocate for themselves.

Note that if you already 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. The following info, with a few minor exceptions – like how to determine protein needs, is all from or based on Dr. Weihl’s talk. However, it is not the medical advice of YOUR treating MD and is not personal medical advice.

Dr. Weihl talked about movement/exercise at length, referring to two research studies about patients utilizing either swimming pool movement or Physical Therapist prescribed home exercise plans. The research on pool therapy was very positive and showed patients really benefited from it. But the research on the home exercise plans showed the opposite. In fact, it appeared that many patients did not follow or DO the home exercise plans. Dr. Weihl could have simply stated at this point that pool therapy works and patients didn’t DO the home prescribed physical therapy plan, so BAD patients! But, he didn’t. He critically examined WHY the pool therapy might have worked through the eyes of accessibility (some people have pools in their back yards!), some people know how to swim and some people do not, and those who chose and did well in pool therapy were those who liked water and could swim. Also, not everyone who has myositis has the ability to swim/do water exercises, so the pool therapy group was selective for that. For some people without a pool, it required ready access to a pool, the ability to drive to it or someone who would drive them there, etc. It also might include the need to have a membership at a gym or YM/WCA, and the money to pay for that, so there was that factor.

With the PT home exercise group, he looked at WHY many of the patients might not have actually utilized the prescribed plan, or at least way underutilized it. Not once did he allude to that patient group as perhaps being “lazy” or unmotivated. Instead, he stressed the importance of patients who go to PT which includes the goal of a home plan or “graduating” to a home plan, needing to really be involved, engaged, and motivated to advocate for themselves re: the exact exercises in the home plan. His take seemed to be that a set of exercises doesn’t work for everyone. And he stressed the need to communicate with the PT about which exercises demonstrated (or shown on a handout) would actually work for the patient, work at home, and be comfortable and motivating for the patient to perform regularly.

Dr. Weihl began by referring primarily to inclusion body myositis (IBM) patients, but then stopped and stated that the need to preserve and build muscle mass is a BIG deal for all myositis patients. And using our muscles is critical to both the preservation and building of muscle mass.

Peak muscle mass occurs around the age of 30 and by 40, we all (myositis or not) begin losing muscle mass at a rate of about 3% per year, which accelerates over time, UNLESS we are moving our muscles regularly and paying attention to nutrition as well, especially protein, which is the basic building block for muscle “making” and preservation. This is obviously even more critical for those of us with myositis and gets even more critical as we age.

The need for adequate protein was stressed. Dependent upon regular eating habits, many may have a less than optimal protein intake, which does not bode well for muscle mass preservation, especially in the face of a muscle-wasting disorder. For elders, this is double trouble, as the loss of muscle mass further accelerates with aging.

Utilizing the protein calculator can be helpful in calculating your protein needs. Just put “protein” into the calculator search box to the right and then fill in your specific information. If, like many on some common myositis medications (prednisone, etc.) you are carrying significant extra weight, you can subtract some protein from your calculation ranges, targeting more mid-range than higher range. My suggestion is to go with the ranges suggested by The American Dietetic Association or the Center for Disease Control and Prevention, which you will see listed on the calculator results.

If you are unsure about protein in foods you eat, you can easily search for protein content in specific foods on the net, or search for “high protein foods” or lists of “high protein foods.” And another way to supplement for those who might have a tough time getting adequate protein is to supplement with an excellent product like Premier Protein Shakes which can readily be ordered or purchased in a community supermarket. The nutritional profile for this product is excellent: only 1 gram of sugar, about 5 grams of carbohydrate, and 30 grams of protein.

There is so much that is completely beyond our control with our myositis disorders. But advocating for ourselves and actively engaging with our providers is within our control, as is engaging in movement to preserve and strengthen muscle and paying attention to our nutritional intake with an eye on adequate protein intake. These are behaviors that can help us navigate the long-term effects of myositis and prevent *unnecessary* frailty.

Join MSU on Clubhouse every Thursday for Myositis Support Gets Moving!

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.

Clubhouse is a free audio-only app you can download from the app store for your devices. Our Clubhouse rooms are members-only, to provide the safest space to share. Join to listen in or be a part of the conversation. Join Myositis Support on Clubhouse today!