Exercise is great for just about everyone. Your heart, muscles, joints, and lungs are meant to work, whether you run ultramarathons or have a seated stretching routine. For people living with Gaucher disease, exercise is particularly vital and can help build bone density.
Weight-bearing, flexibility, and bone-strengthening exercises keep your bones, muscles, and joints strong. Exercise can ward off osteopenia (loss of bone density) and osteoporosis (weak, brittle bones). These two conditions disproportionately affect people with Gaucher disease.
Suzanne Krupskas is a physical therapist, Gaucher advocate, speaker, and patient. She graduated from college in 1978 with a degree in physical therapy. Since then, she has brought her professional expertise to the Gaucher community worldwide as a motivational speaker, exercise coach, writer, and teacher. Krupskas is passionate about Gaucher disease and exercise not only because of her education as a physical therapist but also due to her life experience living with Gaucher disease.
What Are Osteopenia and Osteoporosis?
People living with Gaucher disease can experience several types of bone disease, including osteopenia and osteoporosis. These two conditions are related types of bone loss. Osteopenia can lead to osteoporosis.
- Osteopenia is when the bones lose some of their mineral content (especially calcium). With a lower mineral content, bones become weak, and the chance of a fracture (broken bone) increases.
- Osteoporosis is more severe and occurs when bones become more porous, making them likely to fracture easily. People with osteoporosis lose bone faster than they can grow new bone.
Doctors detect osteoporosis and osteopenia using a bone density test. Also called a DEXA (dual energy X-ray absorptiometry) scan, the test measures your bone strength. Doctors usually recommend weight-bearing exercise to strengthen bones. If you have osteoporosis, you may discuss with your doctor the various prescription medications that can help your body build bone.
People of any gender can develop osteoporosis, although it’s more common in women. About 30% of postmenopausal women have osteoporosis.
Gaucher Disease and Osteoporosis
Many people living with Gaucher disease develop osteoporosis. Your body continually builds and rebuilds bone, replacing older, worn-out tissue about every 10 years. However, with Gaucher disease, the buildup of certain substances gets in the way of forming new bone tissue.
In people with Gaucher disease, a gene mutation (change) causes low levels of glucocerebrosidase (GCase). This enzyme breaks down glucocerebroside, a fatty chemical in the body. When glucocerebroside builds up in organs and bones, it gets in the way of building new bone. Gaucher disease can also increase inflammation, which interrupts blood flow to the bones and weakens them further.
The results can be devastating, as Krupskas knows firsthand. When she received a Gaucher diagnosis in 1981, current treatments weren’t yet available. She was part of the first studies validating enzyme replacement therapy (ERT) as a Gaucher treatment. Still, she has osteoporosis that has resulted in repeated bone damage. She has had eight hip replacements and a pelvic reconstruction—staying active all the while.
“Many people in my age bracket have had skeletal problems. Nowadays, there are multiple FDA-approved medications for Gaucher disease management, and I’m hoping we won’t see the same amount of skeletal problems as when I was first diagnosed,” Krupskas says.
Some people with Gaucher disease haven’t experienced bone issues. Some aren’t on any treatment, as they think they’re asymptomatic and don’t realize there may be bone involvement. To be sure about your bone health, the National Gaucher Foundation strongly advises having a Gaucher specialist—someone who truly understands the nuances of the disease—on your care team.
Speak to Your Gaucher Specialist Before Starting an Exercise Program
“Exercise is good for everyone, but with skeletal problems, you have to be very mindful of the chances of a bone injury or spontaneous fracture,” Krupskas explains. “You have to be aware, be very careful of your activities, and not be forceful. And before you start an exercise program, talk to your Gaucher specialist about your unique situation.”
Krupskas believes there is no substitute for working one-on-one with a trainer or physical therapist who understands your condition. “Every patient with type 1 Gaucher expresses the disease differently.”
Your exercise routine will vary based on whether you have skeletal involvement or joint replacements. Working with an individual coach allows you to tailor your workout to your needs. Krupskas categorized those needs by how much Gaucher affects your mobility:
- Low mobility function: People with Gaucher-related skeletal effects may use a wheelchair or walk with an assistive device. They might need seated exercise and gentler movements to avoid breaks. Often, highly impacted people are those who received a Gaucher diagnosis late, after substantial bone damage had occurred. These individuals may be on treatment, but their bone disease progression was significant before diagnosis and treatment.
- Moderate mobility function: Moderately impacted people have some skeletal involvement and may have had joint replacements. They can’t run or do high-impact exercise but can do standing exercises.
- High mobility function: Some people show few or no symptoms of Gaucher’s. They haven’t had joint replacements and can do some jogging, fast walking, or other moderate- to high-impact exercises.
5 Examples of Bone-Strengthening Activities
The best bone-strengthening activities are weight-bearing exercises. Weight-bearing exercises mean those where your feet touch the ground, such as walking and jogging. These activities gently pressure the bones to encourage them to rebuild and become denser.
You can perform the following bone-strengthening exercises while standing or sitting, depending on your level of mobility functioning. For seated exercises, Krupskas recommends a firm chair, like a dining room chair, not a couch.
1. Strength training
Strength-training exercises are at the heart of building bone density. When you contract and tense the muscles, they pull on the bones. This tension
“For strengthening, I believe in using light weights, even two to three pounds,” Krupskas says. You don’t have to buy dumbbells to do strength training, she adds. “You can improvise. Canned goods or an eight- or 16-ounce water bottle can be your weights.” She suggests:
- Upper body exercises: Simply lift weights with your arms, whether seated or standing. “You’re doing justice to bone resistance for the spine, vertebrae, and legs as well as the arms,” Krupskas explains. “If you are seated, it’s important that your feet are supported, either by the floor or wheelchair footrests.”
- Tension without weights: You can strengthen by firming your muscles and doing slow, intentional movements. Tensing your muscles releases chemicals that can help increase bone density. Here are a couple examples of these exercises:
2. Resistance exercises
When you add resistance to your routine, your muscles release calcium, magnesium, and other minerals that strengthen your bones, Krupskas says. These exercises use mechanical resistance from weight-bearing, such as resistive bands or weights.
Do three sets of 10 repetitions of these exercises, she suggests. “You’ll get the toning and a little bit of cardio.”
- Pushups: Pushups can be done in a variety of positions. Try something different from a traditional pushup.
- Standing pushups: Stand approximately 3 feet away from a wall, facing it. Place your hands shoulder-width apart at chest level against the wall. Bend your elbows as you lean into the wall. Straighten your elbows, pushing your body weight away from the wall.
- Seated pushups (adapted): Hold a lightweight pole, like a broomstick, palms down with your arms shoulder-width apart at chest level. Push the pole away from your chest, straightening your arms. Then bend your elbows, returning your arms to your chest.
- Resistance bands: Resistance bands (like TheraBand) are a light, portable way to strengthen. They are color-coded to indicate various resistance levels. For those who are just beginning an exercise program or have joint issues, it is best to use a lighter resistance band and gradually work up to moderate and then heavier resistance bands. Remember, Krupskas advises, how important it is not to force any movement.
- Band pull: You can do this exercise while seated or standing. Again, if seated, it is important to support your feet on the floor or footrests. Hold onto the band approximately 5 inches away from your chest, arms shoulder-width apart. Hands are palms-down at chest level. Slowly pull the band, extending your arms beyond shoulder width. Try to straighten your arms as far as possible while creating tension in the arms. Slowly return to the beginning position, releasing the tension in your arms.
3. Balance and core exercises
Your core encompasses your stomach muscles, back muscles, and pelvic girdle. “A core workout doesn’t necessarily mean doing sit-ups,” Krupskas says. “Everything we do engages the core.”
- One-leg stand: Stand with your hands on a counter or the back of a firm chair. Balance on one leg while lifting the other off the floor. Count to 10 while engaging your stomach muscles. Return your leg to the floor and alternate legs. Repeat several times. When you first try it, stabilize with two hands on the kitchen counter. As your core strengthens and your balance improves, you can transition to stabilizing with just one or two fingers from each hand. Eventually, you will be able to eliminate the hands.
- Standing straight: Contract (hold in) your abdomen (belly), so your belly button pulls toward your spine. Stand straighter as you stabilize your core.
- Seated core: Even seated, you can build your core muscles by:
- Sitting on a firm seat, arms crossed over your chest, legs bent. Alternate raising each thigh 1 to 2 inches, engaging your core. Lower thigh to starting position.
- Sitting on a firm seat, arms crossed over your chest, straighten one knee and then return to your starting position. Alternate your legs.
Stretching is important to elongate the muscle fibers. There are many variations of stretches for the upper body and lower body, including the hamstrings and calf muscles, which can get very tight from sitting.
- Hamstring stretch: Lie on your back, a pillow under your head. Bend your knees with your feet flat on the floor or bed. Straighten one knee and raise your leg up toward the ceiling. Using both hands, grab and hold behind the thigh for 30 to 60 seconds. You may wish to interlock your fingers to better support your leg. Do not force the stretch. Lower your leg to starting position. Alternate legs and repeat. Do 1 to 2 sets.
- Shoulder stretch: Standing or sitting, stretch your arms out in front of you with elbows straight. Interlock fingers. Raise both arms up toward the ceiling. Hold for 20 to 30 seconds. Slowly return to starting position. Do 3 to 5 sets.
What’s most important, Krupskas says, is not to overdo it. “When stretching, only go to the point where you feel a gentle stretch, but not a forced stretch,” she notes.
If you can get out of the house, a walk can offer a cardiovascular workout for your heart and lungs. If you have a gym setup available, you can exercise on the treadmill or an elliptical machine.
If you need to stay home and have no aerobic equipment available, try gentle marching in place. Set a timer for 30 seconds or 1 minute at a time.
Krupskas cautions that people with skeletal problems or joint replacements should avoid YouTube or Zoom workouts, as they tend to be impersonal. Those who have Gaucher disease can follow specialized video workouts such as Movement for Life, which was created by NGF and Krupskas. Krupskas include exercises designed for those who have low mobility as well as moderate to high mobility.
Low Mobility Exercises
Moderate-High Mobility Exercises
Krupskas warns, “One should never run with a hip, knee, or ankle replacement. After a while, with high-impact activities, there is a possibility the prosthetic will loosen from the bone.”
“A lot of people think that to work out, they have to really sweat,” Krupskas continues. “That’s not true. The statement ‘no pain, no gain’ is a fallacy. It’s really about moving your body every day. In the long run, exercising to your capacity will be one of the most important things you can do for yourself.”
If any questions arise before you begin exercising, please do not hesitate to contact Krupskas. It is important to take advantage of available resources to ensure you are set up for success to increase bone density. Connect with Suzanna Krupskas today.
- Physio-pedia – Gaucher disease: https://www.physio-pedia.com/Gaucher_Disease
- Harvard Health Publishing – Osteopenia: When you have weak bones, but not osteoporosis: https://www.health.harvard.edu/womens-health/osteopenia-when-you-have-weak-bones-but-not-osteoporosis
- International Osteoporosis Foundation – What is osteoporosis?: https://www.iofbonehealth.org/what-is-osteoporosis
- International Osteoporosis Foundation – Treating osteoporosis: https://www.iofbonehealth.org/treating-osteoporosis
- FamilyDoctor.org – What is osteopenia?: https://familydoctor.org/condition/osteopenia/