Recreational therapy Q&A: How to adapt hobbies for MG

Whether it’s gardening, painting, golfing, or playing music, hobbies bring joy, connection, and a sense of purpose. But for people living with myasthenia gravis (MG), muscle weakness and fatigue that change from day to day can make favorite activities feel out of reach.

That’s where recreational therapy for MG can help: Recreational therapists specialize in adapting hobbies for people with MG and other conditions. These therapists can help in adjusting the setup, tools, and timing of an activity so it fits the energy you have on any given day.

We spoke with recreational therapist Kristina Reed about the tools and setups that make accessible hobbies with MG possible, and strategies for maintaining hobbies with muscle weakness that comes and goes. Reed is a recreation therapist at Santa Clara Valley Medical Center (SCVMC), which has a nationally recognized rehabilitation center serving people with spinal cord injuries, brain injuries, stroke, and other neurological conditions. She has worked with patients in this setting for more than 26 years, serving residents of Santa Clara County and beyond, and also supervises interns entering the field.

BD: How can recreational therapy benefit people with MG?

KR: After an illness such as MG, many people can become discouraged, depressed, and unsure of how they will continue to lead a satisfying leisure lifestyle. Recreational therapists exist to help with those challenges.

Why are hobbies a priority after an illness such as MG? Because studies show that continuing to live an active leisure lifestyle supports recovery and quality of life. So we help identify appropriate leisure activities and assist in getting back to them.

I always tell people the activity may look and feel different, but it is important to pursue the satisfaction and joy leisure brings.

It is important to recognize the value of leisure. For some, it becomes a nonpriority as they are just trying to get through everyday challenges, so a lot of education may need to happen. Some people may be more focused on physical activities, such as golfing, cycling, walking, or swimming, while others may focus on gardening, arts and crafts, cooking, reading, playing games or music. It is about what will bring you joy and satisfaction.

Because we treat the whole person and focus on physical, cognitive, social, emotional, and spiritual health, we can help lead people back to a healthy lifestyle.

How do you adapt high-energy or fine-motor hobbies for fluctuating muscle strength?

The setup of an activity can be just as essential as the materials or equipment one uses when adapting a hobby for someone with fluctuating muscle strength. First, the environment should be safe and accessible. We want each person to have a successful experience that is meaningful and enjoyable. If the environment isn’t set up to maximize the experience, we need to reevaluate what can make it more successful.

Because fatigue and weakness can fluctuate with MG, it is also important to be prepared for changes. A poorly set-up workspace can make the experience frustrating and unproductive and lead to increased pain, fatigue, and having to stop early.

How can you set up your space optimally? Look at your environment, the tools and equipment you’re using, and the timing and duration of the activity.

For example, you might really enjoy gardening. Having to get on the ground and plant flowers or vegetables might be taxing on your body. However, with a raised garden bed, you can participate in the same activity with greater ease.

The bed can be built at a height that avoids excessive bending or reaching. A chair at the right height nearby lets you build in rest breaks or keep working while seated. Keeping supplies and tools within reach, so you don’t have to go back and forth, also helps conserve energy.

What ergonomic tools and assistive modifications are helpful?

As recreational therapists, our job is to identify modifications or techniques that make each experience optimal for each person. This varies, as people have different levels of ability and can be affected in many ways. Adaptations also depend on the activity. Many modifications can be used for activities such as painting, playing an instrument, or needlework.

For example, something as simple as a built-up handle (rubber tubing wrapped around a paintbrush), a universal cuff, or jumbo pencils, markers, or crayons can make gripping easier.

For painting, try a tabletop easel so you don’t have to reach as far, and you can use the table to support your upper extremities. For needlework, try hoop holders, rubber thimbles, and larger, lighter materials.

There are also mounted (hands-free) magnifying glasses, some with built-in lights, that can enlarge materials with fine details.

Here’s a quick look at common hobby adaptations:

These days, there are modifications and techniques for just about any leisure activity you put your mind to. If someone wants to do something, they will find a way!

How do you help people enjoy hobbies without triggering muscle fatigue?

For people living with MG, it is essential to listen to their bodies and recognize the difference between the ordinary fatigue of an enjoyable activity and fatigue that signals they should stop or modify what they’re doing. If someone is newly diagnosed and still learning how their body responds, we can guide them in safely returning to their previous leisure activities or exploring new ones.

When planning leisure activities, first look at your general activity from day to day. Are there times of day when you have more energy? Allow yourself extra time so you can build in appropriate breaks. Afterward, keep a short log or journal of the experience, including the time of day, how you felt during and after the activity, and whether there were any adverse effects. This way you can make adjustments as necessary.

Ordinary fatigue will increase as an activity progresses, but it should improve with rest. Stop the activity if weakness becomes sudden or progressive, is worse than normal, or comes with new symptoms. If it does not resolve with rest and remains constant, stop and reevaluate your participation in the activity, and assess what may have led to this.

Can you share an example of a creative adaptation that helped a client stay engaged in a hobby?

In recreational therapy, we are always looking at ways we can adapt people’s premorbid leisure interests to fit their abilities.

I had a patient who was an avid golfer. During rehab, he had a very difficult time facing his new challenges. Golf was nowhere on his mind. He was just starting to come to grips with how his life was changing.

We introduced him to recreational therapy and how it could help. We started with simple activities, using short clubs to work on putting while seated. As his strength improved, he practiced standing with regular clubs.

As he got ready to leave the hospital, he wondered whether he could continue. In his eyes, how could he ever walk the course again or play 18 holes? We introduced him to an adapted golf cart with a swivel seat that lets a player hit from a semi-standing position with the lower body supported. This would let him conserve energy while still participating in something he loved.

We also talked about ways to build back up: starting at the putting green, then the driving range, then nine holes or best ball, and then progressing to his ultimate goal of playing a full round of golf again. Although he was doing this activity with some adaptations, he was still able to experience what motivated him to participate, such as being outside and active, spending time with friends and family, and nurturing his competitive spirit.