To Exercise or Not To Exercise?

By Mary Gallo

“To Exercise or Not To Exercise?”  This is an important question to ask before considering a workout program for a person living with a muscle disease.  You want to try and build muscle, but if you overdo it, working out can leave your muscles feeling “wasted” and weaker than when you started. For anyone with a muscle disease, working out is a very fine balancing act.

Recently, I found a workout program tailored to meet my specific medical needs.

In September of 2008 I joined a gym called Oxygym.  The physical therapists at Oxygym created a workout program to address not only my muscle condition, but also my lung condition.  I have Ullrich Muscular Dystrophy, which caused kyphoscoliosis and restrictive lung disease, requiring a tracheostomy at the age of 21 and the use of night time ventilation.

Before I began the workout program at Oxygym, I first met with one of the doctors to obtain medical clearance and address any concerns I might have had.  Then, I performed a six minute walk test and finally, a 30 minute stress test.

Each day upon arrival I have to go through “check-in” at the front desk.  Here I am greeted with a warm “hello” from the staff and my blood pressure and Pulse-Ox levels are checked.  Then, it’s over to the treadmill for 15 minutes, during which my blood pressure and Pulse-Ox levels are rechecked. Once off the treadmill I replenish with a power drink: a bottle of boost mixed with three heaping tablespoons of Precision Engineer weight and muscle gain powder.

For arm exercises I do a U.B.I. cycle for 10 minutes.  This consists of curls and overhead presses with 3 lb. weights, outward arm presses and resistance band exercises, a set of 25 reps each.

For leg exercises I use the treadmill, a leg press and leg curl machine.  And because I have a lot of trouble climbing the stairs, I use an aerobic “step-up” step, where I practice going up the step while holding onto a bar.

When I’m done with my physical therapy it’s off to the breathing room.  I do one half hour of Inspiratory Muscle Training (IMT) exercises to strengthen the inspiratory muscles in the stomach, chest, neck and back.  The exercises are performed for 26 minutes, with two minutes breathing time and one minute resting intervals.  Further, IMT training is done in a group setting, so you’re not alone, which makes the treatment much more enjoyable.

Being born with Congenital Muscular Dystrophy, I feel that exercising positively far outweighs the results of not exercising.  I’ve been working out ever since I was little, whether it’s at a gym, at home or just going for walks around the block with Lucia, my pet Maltese.  Oxygym is the first place I’ve found that addresses both the needs of my muscles and my lungs.  It’s the perfect balance, and as anyone with a muscle disease will tell you, balance is often hard to come by!

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  • Congenital Muscular Dystrophy

    A group of diseases causing muscle weakness at birth. Several defined genetic mutations cause muscles to break down faster than they can repair or grow. A child with CMD may have various neurological or physical impairments. Some children never gain the ability to walk, while others lose the ability as they grow older. Learn more...

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