Exercise Guide for People Living

with Myotonic Dystrophy

 The Myotonic Dystrophy Foundation (MDF) is the world’s largest myotonic
dystrophy-only patient advocacy organization. Our programs include funding
critical research, providing comprehensive resources and support to affected
individuals, advocating with government agencies to enhance the drug
development pipeline, increase research funding, and improve patient services.

Disclaimer: This guide was created to help educate you about exercise. This guide does not replace any
advice from your doctor or physical therapist and is meant to be educational only. Always consult your
doctor or physical therapist before making any significant changes to your exercise regimen.

A publication of the Myotonic Dystrophy Foundation (MDF)

Chief Executive Officer: Tanya Stevenson, EdD, MPH

Program Director: Leah Hellerstein, LCSW, MPH

Authors: Tina Duong, Ph.D., MPT; Katy Eichinger, Ph.D., PT, DPT

Publication Design: Julie Mills, Designpony

Community Reviewer Panel: Rob Besecker, Teresa Buffone, Israel Dubin, Kay Hayes

©2020 by the Myotonic Dystrophy Foundation. All rights reserved. This publication is provided free of charge by
the MDF. Wide dissemination is encouraged. Copies may be made and distributed in keeping with the following
guidelines: The publication must be reproduced in its entirety, including pages containing information about MDF.
Copies of the publication may not be sold. 1/21
Exercise Guide for People Living
with Myotonic Dystrophy

Benefits of Exercise . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Types of Exercise. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
Flexibility/Stretching. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 2
Aerobic/Cardiovascular Exercise. . . . . . . . . . . . . . . . . . . . . . . . . 3
Resistive/Strengthening Exercise. . . . . . . . . . . . . . . . . . . . . . . . . 3
Balance Training. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 4
Additional Considerations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
How To Get Started With Exercise. . . . . . . . . . . . . . . . . . . . . . . . . 5
Monitoring Exercise . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
FITT Principles . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 6
Finding Motivation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
Tricks to get Started and Staying Motivated. . . . . . . . . . . . . . . . 7
Other Ways to Increase Motivation. . . . . . . . . . . . . . . . . . . . . . . 7
Technology and Exercise Aids. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 8
Putting It All Together. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 9
Appendix
Glossary of Exercise Terms . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Exercise Intensity Measurement Charts . . . . . . . . . . . . . . . . . . 11
Strengthening Intensity Based on Training Zones. . . . . . . . . . 11
FITT Based Exercise Calendar . . . . . . . . . . . . . . . . . . . . . . . . . . 12
Exercise Presentations. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Web Resources. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
Exercise Videos. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 14
Fitness Apps, Websites and Trackers. . . . . . . . . . . . . . . . . . . . . 15
References . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16
T his guide for exercise should be used with recommendations from your health care providers.
All individuals should talk to their health care providers before starting a new exercise program.
Physical therapists can help design exercise programs that are individualized to meet a person’s
specific needs while taking into consideration other comorbidities related to myotonic dystrophy.
If you have access to a physical therapist, consult them before starting an exercise program. This
document is intended to guide you on how to exercise on your own and will help you get started.

Studies show that moderate exercise is safe and may be effective for individuals with myotonic
dystrophy. 1-4 Even though exercise does not cure myotonic dystrophy, it can help optimize function
and maintain strength.

Benefits of Exercise
General Benefits of Exercise 5, 6
∞ These benefits are relevant for all individuals including those with myotonic dystrophy.
∞ Reduces blood pressure, prevents obesity, reduces risk of osteoporosis, heart disease, arthritis, Type 2
Diabetes Mellitus and some forms of cancer.5-7
∞ Reduces the risk of falling.7
∞ Helps reduce anxiety, depression and pain.8-11
∞ Lowers the risk of cognitive11, 12 decline and dementia.13, 14
∞ Improves mental health and energy levels.15

Benefits of Exercise for Individuals with Myotonic Dystrophy

∞ Exercise creates a response that changes metabolism and energy used by the muscle fibers that have
an impact on muscle force production.16
∞ Strength loss occurs slowly over time ranging from 11% to 55% compared to those without DM.17, 18
∞ Strengthening exercises can counter muscle loss/atrophy.3, 19
∞ Physical training increases muscle fiber size with no negative effect on the tissue.4, 20

Types of Exercise
Exercise programs should include 4 types of exercises:
1. Flexibility/Stretching/Range of Motion
2. Aerobic/Cardiovascular
3. Resistive/Strengthening
4. Balance Training

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 1
Flexibility/Stretching/Range of Motion
What is Range Of Motion (ROM)?
∞ ROM is the entire range that a joint is able to move. This
may be done through passive ROM (joint is moved by
someone else), active ROM (joint is moved by your own
muscle strength), or active assisted ROM (joint is moved by
a combination of your own muscle strength and assistance
from someone else or a device).
∞ Muscle strength is required to actively move throughout the
ROM, but some people may have limitations at different parts
of the full ROM, due to tight muscles and tendons.

What is stretching?
∞ Stretching increases flexibility and extensibility of the muscles
and tendons. Stretches should be held for 60 seconds or
2-3 X 30 seconds. Stretching requires a joint be moved
through your range of motion.

Benefits of stretching
∞ Stretching reduces tightness and muscle imbalances. If you do not have the muscle
strength to move the joint throughout the entire range of motion, the joints and
muscles and tendons shorten and may stiffen, reducing the range of motion over time.
∞ For example, with weak ankle muscles, you may not be able to flex your foot up, which
may lead to more difficulty walking and increased tripping. Stretching your calf muscle
and Achilles tendon (muscles at the back of your ankle), keeps the ankle joint flexible
and the tendon from shortening over time. Decreased ankle range of motion may lead
to more difficulty walking including tripping.
∞ Increases circulation and nutrition to muscle fibers.
∞ Improves function and efficiency of muscles. The more flexible joints are, the less
energy is required to move, thus improving muscle performance and function.
∞ Decreases the risk of injury.
∞ Helps to manage stress.
∞ May reduce post exercise soreness.
∞ May reduce backpain; tight hamstrings and hip flexors contribute to increased stress on
the lower back.
∞ Stretching videos:
https://cinrgresearch.org/publications/stretch-out/
∞ Low back pain stretches:
https://www.youtube.com/watch?v=eblZmhf2u_A
∞ Head/neck posture exercises:
https://www.youtube.com/watch?v=DB6RNxThAxU
∞ Massage has also been used to decrease pain and tightness. Studies have shown that it
improves muscle repair and relax muscles after exercise.28, 29 Massage therapy can also
help relax muscles:
https://www.physio.co.uk/treatments/massage/massage-for-client-groups/massage-
in-neurological-disorders.php

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 2
Stretching strategies
∞ Stretching is a form of exercise where the muscle and tendon are
moved throughout the range of motion of a joint. Move through
the full ROM of the joint in different positions. Gravity can make
it difficult for weak muscles to move through ROM, so for weaker
muscles, consider performing ROM exercises when lying down or
in other positions that minimize the effect of gravity.
∞ Perform active assisted ROM stretches. If your muscles are not
strong enough to move your arm over your head or through the
entire ROM, use a sling/spring device or another person to assist
your shoulder through the ROM.
∞ Use gentle, prolonged stretches at the end of the ROM.
∞ Try low impact yoga, such as gentle yoga or chair yoga.

Aerobic/Cardiovascular Exercise
What is aerobic exercise?
∞ Aerobic exercise increases the heart rate and respiratory rate (breathing).
Consult with your physician before starting or increasing aerobic activity.
• Aerobic activity should be performed at moderate intensity. You should be able to
talk, but not sing.
• Individuals with DM tend to be less active than peers in regards to completing the
recommended amount of moderate intensity exercise per week.21 We want to provide
resources and ideas to support a more active lifestyle.

General recommendations for weekly physical activity from the Physical Activity Guidelines
for Americans:
∞ 2.5 to 5 hours per week of moderate intensity physical activity OR
∞ 1 hour and 15 min to 2.5 hours per week of vigorous physical activity.22

Strategies to increase aerobic activity

∞ Remember to work with your physician and physical therapist before increasing aerobic activity
to ensure safe progression.
∞ Progression of exercises should be based on monitoring intensity of exercise (refer to table
on page 11).
∞ Activity suggestions:
• Household tasks such as vacuuming and raking • Elliptical machine
• Walking briskly or jogging • Dancing
• Bicycling (outside or inside with a stationary bike) • Water exercise

Resistive/Strengthening Exercise
What are resistive or strengthening exercises?
∞ Resistive exercises are activities that make your muscles contract in order to increase strength
and endurance.
∞ Engage in resistive/strengthening activities two times per week at moderate intensity;
8-12 repetitions per major muscle group.22

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 3
Types of strengthening
∞ Strength training requires a mind and muscle connection to train
your muscles and nerves to communicate to improve movement.
∞ Choices may vary depending on your amount of strength and
may vary for different joints. Individuals with DM often have more
weakness in the wrists and ankles than other parts of the body.
∞ Utilize active assisted strengthening for joints that aren’t strong
enough to move through the full ROM. Consider assistance from
a caregiver, trainer, or sling/spring device, if you have access.

Types of resistance to use in strengthening exercises

∞ Body weight
∞ Weights or weight machines
∞ Elastic bands
∞ Water

Balance Training
What is balance training?
∞ Balance training is a combination of exercises that challenge your sensory systems and strengthen the
muscles that keep you upright, including your core, trunk and legs. Balance training improves stability
and helps prevent falls.
∞ Balance training should be specific to your risks and needs. Consult with a physical therapist for
individualized balance evaluation and treatment.

Benefits of balance training

∞ Improves mobility and decreases fall risk.23
∞ Individuals with DM are at a higher risk for falls due to calf and hip weakness, which decreases reaction
time to prevent falls.24
• Fall risk is similar to the elderly population.25
• The ankle muscles are affected in DM1 which impacts the ability to use ankle strategies to regain
balance and/or prevent falls. Weakness in the muscles that flex the foot also leads to an increased
risk of tripping and falling.

Strategies for balance training

∞ Balance training should be a multi-factor approach addressing strength, coordination, vision and
cognition.
∞ An example is the The Otago Exercise Program, which includes 17 exercises of strengthening, balance,
forward/backward walking, and balance on a single leg.28-30 https://givefit.org/balance-better-landing
∞ Try tai chi: https://www.youtube.com/watch?v=vHBR5MZmEsY
∞ Try yoga, like chair yoga:
https://www.youtube.com/watch?v=9rNxHZGREks
https://www.youtube.com/watch?v=-Ts01MC2mIo
https://www.youtube.com/watch?v=2oT3PJ-22RI
https://www.youtube.com/watch?v=0xbCfTHz3mU
∞ Balance training should include dual task activities, such as controlling posture while carrying an
object, reaching for objects, and visual distractions.

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 4
Special Considerations for Myotonic Dystrophy
Individuals with DM may have difficulty with common exercises due to
specific areas of weakness. For example, individuals with DM often have
neck weakness; thus sit ups may be difficult. Modifications may include
using upper limbs to support the neck, crunches, performing modified
plank activities as well as other types of core exercises. Activities such
as running or jumping may also be challenging due to ankle weakness.
If this is the case for you, consider performing cardiovascular exercises
where your feet are secured such as on an exercise bike or an elliptical.
Holding onto weights or other types of resistance equipment may also
be difficult due to hand weakness, therefore, you may want to consider
using weights around your wrist or weightlifting hooks/grips. Using
the aquatic environment for cardiovascular or resistive exercise may
allow you to do activities that are more challenging to perform on land.
Options for adaptive exercise equipment are listed below.
https://www.theptdc.com/disability-fitness
https://www.sportaid.com/exercise-equipment/

How To Get Started With Exercise

∞ You can get started with exercise on your own, but talk to your physician
before doing so to make sure exercise is safe for you, especially if you have any
cardiac or pulmonary difficulties. You should consult with a physical therapist
who has knowledge about myotonic dystrophy or neuromuscular disease for
an evaluation prior to starting an exercise program. You may receive the most
benefit from working with a physical therapist in collaboration with a personal
training to ensure safe progression of exercises. You may consider seeing a
dietician to answer any questions related to your exercise goals. Best results are
from a combination of diet and exercise.
∞ You can find a local physical therapist (https://aptaapps.apta.org//
APTAPTDirectory/FindAPTDirectory.aspx) or a specialized exercise personal

h e c k out page trainer (https://www.acefitness.org/education-and-resources/lifestyle/find-

C ace-pro/) who understands your needs, will help you feel more confident
xercise
14 for e about your home exercise program, and will show you how to safely progress.
at
videos th
∞ Make exercise FUN!
you! • Discuss your exercise goals with your personal trainers and physical
work for therapists.
° Review areas that you want to improve upon in your exercise program.
° Let them know what you like to do for fun so they can help you be
creative about exercise.
• Find friends to exercise with and to help keep you motivated.
• Join classes to learn something new! Consider dancing, boxing,
swimming, yoga, tai chi, Zumba, and hiking groups.
https://www.youtube.com/watch?v=JqlRGLPlJ7A
https://www.youtube.com/watch?v=gqaUXBnss4Q
https://www.youtube.com/watch?v=Zb2wkHyUAQQ

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 5
Monitoring Exercise
∞ Exercise intensity is a way to measure how hard you exercise. Exercise intensity is important to monitor
to determine your level of work during exercise. When starting exercise, we recommend also starting
an exercise calendar/journal, meaning a record of your activity on a calendar (see page 12 in the
appendix for an example).

∞ The most direct way to measure exercise intensity is through VO2 measurement, which is a way to
evaluate your exercise capacity by measuring how much oxygen you take in per minute of exercise.
This may be assessed at your clinic via referral by your physician or available at some fitness clubs at a
cost. https://www.whyiexercise.com/VO2-Max.html
∞ You can also measure exercise intensity at home through the simpler methods described below and
on page 11.30
• Heart Rate (HR): Measure by calculating your target heart rate
• Rate of Perceived Exertion (RPE)
• Talk Test (TT)
FITT Principles
FITT stands for Frequency, Intensity, Time and Type.
∞ FITT principles are a way to monitor your exercise program and further exercise routines.5, 30
∞ Your exercise program should consist of a combination of aerobic/cardiovascular activity, strength/
resistance, and flexibility.
∞ Frequency: How often you are doing the exercise.
• Frequency allows you to find a balance between the different types of exercise you are doing and
rest time for healing.
∞ Intensity: Amount of effort or physiological work required for the exercise.
• Intensity may be measured via heart rate, Rate of Perceived Exertion or talk test.
• You can monitor intensity by increasing weightlifting repetitions if you aren’t tired, or adding more
time to your walk and swinging your arms.
∞ Time: How long you performed the exercise.
∞ Type: What kind of exercise you did; strength, cardio, flexibility or a combination.
∞ Example of a FITT based exercise calendar is in the appendix on page 12.

PHYSICAL ACTIVITY GUIDELINES FROM THE

U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES (2nd ed; 2018)22
https://health.gov/sites/default/files/2019-09/Physical_Activity_Guidelines_2nd_edition.pdf)

Adults with chronic conditions or disabilities should do at least:

∞ Aerobic Activity: Activities should be spread throughout the week.
• 150 minutes (2.5 hours) to 300 minutes (5 hours) a week of moderate-intensity aerobic activity.
OR
• 75 minutes (1.25 hours) to 150 minutes (2.5 hours) a week of vigorous-intensity aerobic activity.
∞ Muscle Strengthening: Moderate or greater intensity and that involve all major muscle groups on
two or more days a week.
When adults with chronic conditions or disabilities are not able to meet the guidelines, they should
engage in ANY activity within their limitations and should avoid inactivity.

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 6
 Finding Motivation
∞ Participation in physical activity and exercise requires motivation.

c k out page Choose activities that are of personal interest and are fun.31
C he ∞ Because DM may have a cognitive component that impacts
f o r e xercise adherence and motivation, it is important to find activities that fit
14
at your social interests.
videos th ∞ A study that combined Cognitive Behavior Therapy (CBT) and
o rk f o r you! exercise in DM demonstrated that those who received CBT had
w increased physical activity, decreased fatigue, and increased function
as measured by the distance walked on the 6 Minute Walk Test.32
∞ Motivation and fun are the biggest indicators to exercise adherence.33
∞ Realistic goals are important!

Tricks to Get Started and Staying Motivated

∞ Give yourself a break. ANY amount of exercise is better than none.
∞ The biggest barrier to starting an exercise program is JUST GETTING
STARTED!
∞ Start slow and set exercise goals. Start with 5 minutes, then 10
minutes, then increase.
∞ Consider a quick home workout: http://twominutemoves.com/
workouts
∞ If exercise feels too hard at first, ease off. Enjoying the activity is vital
to sticking with it. You should feel good at the end of your exercise
session, it’s positive reinforcement!
• When exercise is hard, remind yourself aloud how great you are
doing! Smile! This may sound cheesy, but it works. Positive self-
talk is critical to success!
∞ You’re already moving in the right direction with your desire to
exercise, keep up the good work.

Other Ways to Increase Motivation

∞ Consistency is key!
∞ Schedule exercise into your daily schedule, make it a priority.
∞ Monitor your workout with an exercise calendar.
∞ Buddy up with a family member or friend and keep each other
accountable.
∞ Participate in an exercise class online, on the television, or an active
video game.
∞ Set goals, track your progress, and REWARD yourself.
∞ Commit to at least 10 minutes of physical activity per day because
consistency is key to exercise adherence. The hardest part about
exercise is getting started. Often, once you start physical activity,
you will be able to keep going.

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 7
Technology and Exercise Aids
Technology is changing the way we exercise from virtual classes
to wearable devices. Types of technology that involve exercise are
listed below and more information about fitness apps, trackers and
websites can be found in the appendix on page 15.

Active video games:

∞ Such as Dance Dance Revolution, Wii, WiiFit, Xerbike.
∞ Active video games may have an impact on increased energy
expenditure and health outcomes.34

Activity trackers:35
∞ Such as Smartwatches, Fitbit, and Garmin.
∞ Use activity trackers that can track movement in three planes;
walking, dancing and other movements in many planes.
∞ Activity trackers are small enough to be worn on your hand,
arm or leg to track all types of activity.
∞ Some activity tracker devices also help to promote good posture.

Web-based or App Exercise Programs:36

∞ Different web and app-based exercise programs allow you to
join exercise groups and make exercise fun and social.
∞ Consider apps that combine diet and exercise tracking such as
MyFitnessPal.
∞ Many apps link other apps together to give you a whole picture
of your activity.
∞ Apps help with adhering to an exercise program and tracking
progress.

Heart rate monitors:37

∞ Such as Polar, Apple Watch, and Fitbit.
∞ Heart rate monitors are a good way to track activity, estimate
energy expenditure, and provide activity data.
∞ Heart rate monitors may be able to provide safe parameters to
exercise. You should consult with your physical therapist
(if you have one) and Physician to define heart rate parameters
that are individualized to you.

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 8
Putting it all Together ∞ If you are starting a new exercise program,
check with your physician and health care
team before starting.

∞ Try different physical activities until you find

something that you enjoy.

∞ Incorporate different types of exercise into

your regimen; activity doesn’t need to be done
together or on the same days.

∞ Start slowly and increase gradually.

• Any activity is good activity! Start with 10

minutes/day.

• Add a brief (5-10 minute) warmup to your

chosen exercise, such as stretching or
walking.

• Make exercise a habit. It is better to get

into an exercise routine by doing short but
consistent sessions.

∞ Use strategies to increase your success.

∞ Track your progress and reward yourself!

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 9
Glossary of Exercise Terms 43
Active exercise: Exercise that a person does using Interval training: Repetitions of exercise interrupted
his or her own strength. by periods of rest and low activity.

Aerobic exercise: Exercise that involves or improves Maximal: Full-out; exercising maximally means
oxygen utilization by requiring the heart and lungs exercising as hard and as fast as one possibly can.
to work harder. Aerobic exercises involve low to
moderate intense activities performed for extended Oxygen consumption: The amount of oxygen taken
periods of time. Examples are walking, running, in during exercise or at rest; can be determined
swimming and cycling. directly by measuring exercise intake and carbon
dioxide exhalation through a metabolic mask or can
Anaerobic exercise: Exercise that does not involve or be approximated indirectly by measuring heart rate.
improve oxygen utilization; example weightlifting.
Passive exercise: Exercise that a person does
Cardiomyopathy: Degeneration of the heart muscle, without any exertion; like having someone else move
occurs in some people with DM. one’s limbs in range-of-motion exercise; benefits are
improved circulation, movement, comfort, flexibility.
Conditioning: Training to perform better for a
long period of time; usually done through aerobic Personal trainer: A fitness professional who develops
exercise, such as walking, swimming, etc. and implements an individualized approach to
physical fitness, generally working one-on-one with
Coordination: The ability to integrate muscle a client.
movements to perform specific functions, such as
walking, running, or manipulation of small objects; Physiatrist: A physician who specializes in maximizing
hand-eye coordination is the ability to integrate what functional abilities and quality of life for people with
one sees with subsequent muscle action. physical impairments; the specialty is called physical
medicine and rehabilitation.
Contraction: What muscles do when they’re active;
refers to protein filaments actin and myosin sliding Physical therapist: Health care professional who
over each other. helps individuals develop, maintain and/or restore
maximum movement and functional ability.
Contracture: Permanent shortening of a muscle or
tendon, resulting in a permanent “freezing” of a joint Range-of-motion exercise: Exercise that involves
in a certain position; occurs when muscle weakness putting a joint through its normal range of motion
or spasticity prevents normal range of motion over a (as far as it can go in any direction); can be done
long period of time. actively or passively.

Elliptical trainer: Stationary exercise device that Resistance exercise: A form of exercise in which
stimulates walking and running without causing the each effort is performed against a specific opposing
joints to be subjected to much force. force generation by resistance, for example,
resistance to be lifted, pushed, squeezed, stretch or
Exercise: Muscle exertion (use) involving expenditure bent; sometimes used interchangeably with strength
of energy. training.
Fitness: The ability of the circulatory and respiratory Treadmill: Piece of indoor sporting equipment used
systems to supply nutrients to skeletal muscles to allow for the motions of running or walking while
during sustained energy expenditure (exercise) and staying in one place.
the ability of muscles to respond.

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 10
Strengthening Intensity Based on Training Zones29 (** = target zone)

Zone Training Type of Training Resistance

1-3 repetitions Muscle power Very heavy

3-7 repetitions Muscle strength Heavy

Strength and
**8-12 repetitions Moderate
endurance

13-25 repetitions Endurance Light

Exercise Intensity Based on Rate of Perceived Exertion

and Heart Rate Maximum29 (** = target zone)
RPE
Intensity Heart Rate
(Based on a
Level Maximum, %
0-10 scale)

Light RPE < 5 50-63%

**Moderate RPE = 5-6 64-76%

Vigorous RPE > 7 77-93%

Ways To Measure How Hard You Are Exercising28

Method Method Equipment

Heart Rate ∞ Maximum HR= 220 – Age ∞ Heart rate monitor

(HR) ∞ Target HR= Max HR x .65-.80 (typically for moderate ∞ Take your pulse (not
intensity; but also may be training dependent) ideal because you
*cardiac have to stop activity to
conditions ∞ Beta blockers may affect HR, making it difficult to
monitor HR intensity. measure)
will have
modified • Irregular cardiac rhythms may impact HR
target HR monitor accuracy.

∞ RPE Scale: 0-10 based on how hard you feel you are ∞ Borg Scale32
Rate of working. (6-20 scale)
Perceived ∞ Omni Scale33
Exertion ∞ Effort should be based on: HR, breathing, muscle
(0-10 scale)
(RPE) fatigue, sweating, and discomfort. Be honest about
how you feel.

∞ Measures “ventilatory threshold” of moderate activity. ∞ None

Talk Test • Ventilatory threshold is the point where you are
(TT) breathing faster than the oxygen you consume.
∞ You should be able to speak 3-5 words comfortably.

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 11
FITT Based Exercise Calendar

FITT Principles: Frequency, Intensity, Time, Type

How Reps: How hard am I working:

Day Exercise
long? sets Intensity

 Cardio________________
Monday _________________________
1 2 3 4 5 6 7 8 9 10
____/____/____  Strength_______________
_________________________
 Cardio________________
Tuesday _________________________
1 2 3 4 5 6 7 8 9 10
____/____/____  Strength_______________
_________________________
 Cardio________________
Wednesday _________________________
1 2 3 4 5 6 7 8 9 10
____/____/____  Strength_______________
_________________________
 Cardio________________
Thursday _________________________
1 2 3 4 5 6 7 8 9 10
____/____/____  Strength_______________
_________________________
 Cardio________________
Friday _________________________
1 2 3 4 5 6 7 8 9 10
____/____/____  Strength_______________
_________________________
 Cardio________________
Saturday _________________________
1 2 3 4 5 6 7 8 9 10
____/____/____  Strength_______________
_________________________
 Cardio________________
Sunday _________________________
1 2 3 4 5 6 7 8 9 10
____/____/____  Strength_______________
_________________________

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 12
Exercise Presentations
Exercise and Myotonic Dystrophy
1. https://www.myotonic.org/sites/default/files/pages/files/
Eichinger-Exercise-2019.pdf
2. https://www.myotonic.org/digital-academy/exercise-nutri-
tion-speech-2019-myotonic-annual-conference
In this presentation from the 2019 MDF Annual Conference, Katy
Eichinger, PhD, DPT, from the University of Rochester reviews current
research and strategies for managing DM symptoms with exercise.

Staying Strong: DM & Exercise

1. https://www.myotonic.org/digital-academy/staying-strong-dm-
exercise-panel-2015-myotonic-annual-conference
2. https://www.myotonic.org/sites/default/files/pages/files/Katy-
Eichinger_Staying-Strong-DM-and-Exercise_2018-Conference.pdf
In these presentations from the 2018 and 2015 MDF Annual Conferences,
a panel of physical therapy professionals and people living with DM
discuss ways to stay physically fit.

Cognitive behavioral therapy with optional graded exercise therapy

in patients with severe fatigue with myotonic dystrophy type 1: a
multicenter, single-blind, randomized trial.
1. https://www.ncbi.nlm.nih.gov/pubmed/29934199
2. https://www.myotonic.org/optimistic-view-dm1
This study looked at whether cognitive behavioral therapy optionally
combined with graded exercise compared with standard care alone
improved the health status of patients with DM1.

Understanding Falls in DM Patients

1. https://www.myotonic.org/understanding-falls-dm-patients
This research study found that DM1 and DM2 patients both exhibited an
increased frequency of falls, and examines the risk factors, circumstances
and consequences of falls in DM.

Web Resources
1. Go 4 Life: https://go4life.nia.nih.gov/
2. My Health Finder: https://health.gov/myhealthfinder/topics/
everyday-healthy-living/physical-activity
3. Move Your Way
∞ Adults: https://health.gov/sites/default/files/2019-11/PAG_MYW_
Adult_FS.pdf
∞ Older adults: https://health.gov/sites/default/files/2019-11/PAG_
MYW_OlderAdults_FS.pdf
4. Physical Activity: Strategies and Resources (CDC): https://www.
cdc.gov/nccdphp/dnpao/state-local-programs/physicalactivity.html

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 13
Exercise Videos
Balance
https://www.youtube.com/watch?v=4PgR8l4n7jY
https://www.youtube.com/watch?v=f717XLH5trQ
https://www.youtube.com/watch?v=coxxRzKLV3E
https://givefit.org/balance-better-landing

Bed mobility
https://www.youtube.com/watch?v=nVRh1rbdiQA

Breathing exercises
https://kristinmcgee.com/breathing-exercises-
chair-yoga-practice
https://www.youtube.com/watch?v=KEAjRNF48jI

Buttocks exercises
Bridging: https://www.youtube.com/
watch?v=tM3h1p_3gtU&feature=emb_title Low back pain stretches
https://www.youtube.com/watch?v=eblZmhf2u_A
Calf and ankle chair exercises https://www.youtube.com/watch?v=6C-wfV27bzI
https://www.youtube.com/watch?v=gpaKiYJ_g-M
https://www.youtube.com/watch?v=6C-wfV27bzI
https://www.youtube.com/
watch?v=Xm4TYtALUIs&feature=emb_rel_end
Seated arm workouts
https://www.youtube.com/watch?v=N8NAREhkA44 https://www.youtube.com/watch?v=EVQcgYQyzz0

Chair exercises Squats

https://www.youtube.com/watch?v=eK6xH5qqcTw https://www.youtube.com/watch?v=oyoqbWs_y78
https://www.verywellfit.com/chair-exercises-for-
seniors-4161267 Stretching
https://californiamobility.com/21-chair-exercises- https://cinrgresearch.org/publications/stretch-out/
for-seniors-visual-guide/
https://www.youtube.comwatch?v=ZwJ9pGxJKGc Trunk stabilization/core stability
Start with doing in chair
Getting up from the floor https://skillsforaction.com/assess-sitting-core-
https://www.youtube.com/watch?v=Q9VsxiE_iQU strength-stability-child

https://www.youtube.com/watch?time_ Plank: https://www.youtube.com/

continue=72&v=lwVhl04v0E4&feature=emb_logo watch?v=TvxNkmjdhMM

https://www.youtube.com/ https://myrehabconnection.com/trunk-stability-
watch?v=4Z0wqZqDN0A exercise-progressions/

Home workout Upper body and trunk exercises

http://twominutemoves.com/workouts https://www.youtube.com/watch?v=qZgM1UCiTMU

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 14
Fitness Apps, Websites and Trackers

Link Features Cost

Tracks different types of

App https://www.mapmyfitness.com exercise: running, walking, Free
cycling, swimming

Integrates exercise and

App https://myfitnesspal.com Free
diet tracker

Has online workouts

such as meditation, yoga,
Monthly
App www.onepeloton.com strength, cardio, running
fee
apps with motivating
instructors

Access to 300+ exercises Free on

App https://ifitnesstracker.com
and track progress app store

Personal trainer app for all Monthly

App https://sworkit.com
levels fee

Tracks activities, heart rate

Smartwatch Purchase
www.fitbit.com and nudges you to move
Tracker device
throughout the day

Tracks activity, heart rate

and activity levels that
Purchase
Smartwatch www.apple.com/watch could be preset to remind
device
you to move throughout
the day

Tracks activity, heart rate

and activity levels that could Purchase
App https://www.apple.com/ios/health/
be preset to remind you to device
move throughout the day

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 15
References:
1. Voet NB, van der Kooi EL, van Engelen BG, Geurts AC. Strength training and aerobic exercise training
for muscle disease. The Cochrane Database of Systematic Reviews 2019;12:Cd003907.
2. Cup EH, Pieterse AJ, Ten Broek-Pastoor JM, et al. Exercise therapy and other types of physical therapy
for patients with neuromuscular diseases: a systematic review. Archives of Physical Medicine and
Rehabilitation 2007;88:1452-1464.
3. Orngreen MC, Olsen DB, Vissing J. Aerobic training in patients with myotonic dystrophy type 1.
Annals of Neurology 2005;57:754-757.
4. Roussel MP, Morin M, Gagnon C, Duchesne E. What is known about the effects of exercise or training
to reduce skeletal muscle impairments of patients with myotonic dystrophy type 1? A scoping review.
BMC Musculoskelet Disord 2019;20:101.
5. Garber CE, Blissmer, B, Deschenes, MR, Franklin, BA, Lamonte MJ, Lee, IM Nieman DC, Swain, DP;
AMerinca College of Sports Medicine. American College of Sports Medicine position stand. Quantity
and quality of exercise for developing and maintaining cardiorespiratory, musculoskeletal, and
neuromotor fitness in apparently healthy adults: guidance for prescribing exercise. Med Sci Sports
Exerc 2011;43:1334-1359.
6. McDonald CM. Physical activity, health impairments, and disability in neuromuscular disease. Am J
Phys Med Rehabil 2002;81:S108-120.
7. Nelson ME, Rejeski WJ, Blair SN, et al. Physical activity and public health in older adults: recommendation
from the American College of Sports Medicine and the American Heart Association. Med Sci Sports
Exerc 2007;39:1435-1445.
8. Bibeau WS, Moore JB, Mitchell NG, Vargas-Tonsing T, Bartholomew JB. Effects of acute resistance
training of different intensities and rest periods on anxiety and affect. J Strength Cond Res
2010;24:2184-2191.
9. Martinsen EW. Physical activity in the prevention and treatment of anxiety and depression. Nord J
Psychiatry 2008;62 Suppl 47:25-29.
10. Rethorst CD, Wipfli BM, Landers DM. The antidepressive effects of exercise: a meta-analysis of
randomized trials. Sports Med 2009;39:491-511.
11. Weuve J, Kang JH, Manson JE, Breteler MM, Ware JH, Grodstein F. Physical activity, including walking,
and cognitive function in older women. Jama 2004;292:1454-1461.
12. Yaffe K, Fiocco AJ, Lindquist K, et al. Predictors of maintaining cognitive function in older adults: the
Health ABC study. Neurology 2009;72:2029-2035.
13. Paterson DH, Warburton DE. Physical activity and functional limitations in older adults: a systematic
review related to Canada’s Physical Activity Guidelines. Int J Behav Nutr Phys Act 2010;7:38.
14. Larson EB, Wang L, Bowen JD, et al. Exercise is associated with reduced risk for incident dementia
among persons 65 years of age and older. Annals of Internal Medicine 2006;144:73-81.

15. Puetz TW. Physical activity and feelings of energy and fatigue: epidemiological evidence. Sports Med
2006;36:767-780.

16. Laustriat D, Gide J, Barrault L, et al. In Vitro and In Vivo Modulation of Alternative Splicing by the
Biguanide Metformin. Mol Ther Nucleic Acids 2015;4:e262.

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 16
17. Gagnon C, Petitclerc E, Kierkegaard M, Mathieu J, Duchesne E, Hebert LJ. A 9-year follow-up
study of quantitative muscle strength changes in myotonic dystrophy type 1. Journal of Neurology
2018;265:1698-1705.

18. Mathieu J, Boivin H, Meunier D, Gaudreault M, Begin P. Assessment of a disease-specific muscular

impairment rating scale in myotonic dystrophy. Neurology 2001;56:336-340.

19. Tollback A, Eriksson S, Wredenberg A, et al. Effects of high resistance training in patients with myotonic
dystrophy. Scand J Rehabil Med 1999;31:9-16.

20. Roussel MP, Morin M, Petitclerc E, et al. Strength-Training Induces Skeletal Muscle Adaptations in
Patients with Myotonic Dystrophy Type I: A Case Study: 2302 June 2, 3: 45 PM - 4: 00 PM. Med Sci
Sports Exerc 2016;48:641.

21. Knak KL, Sheikh AM, Witting N, Vissing J. Physical activity in myotonic dystrophy type 1. Journal of
Neurology 2020.

22. Services UDoHaH. Physical Activity Guidelines for Americans, [online]. Available at: https://health.
gov/sites/default/files/2019-09/Physical_Activity_Guidelines_2nd_edition.pdf.

23. Shubert TE. Evidence-based exercise prescription for balance and falls prevention: a current review
of the literature. J Geriatr Phys Ther 2011;34:100-108.

24. Missaoui B, Rakotovao E, Bendaya S, et al. Posture and gait abilities in patients with myotonic dystrophy
(Steinert disease). Evaluation on the short-term of a rehabilitation program. Ann Phys Rehabil Med
2010;53:387-398.

25. de Die-Smulders CE, Howeler CJ, Thijs C, et al. Age and causes of death in adult-onset myotonic
dystrophy. Brain: A Journal of Neurology 1998;121(Pt 8):1557-1563.

26. Hammaren E, Kjellby-Wendt G, Lindberg C. Muscle force, balance and falls in muscular impaired
individuals with myotonic dystrophy type 1: a five-year prospective cohort study. Neuromuscular
Disorders: NMD 2015;25:141-148.

27. Hammaren E, Kjellby-Wendt G, Kowalski J, Lindberg C. Factors of importance for dynamic balance
impairment and frequency of falls in individuals with myotonic dystrophy type 1 - a cross-sectional
study - including reference values of Timed Up & Go, 10m walk and step test. Neuromuscular
disorders: NMD 2014;24:207-215.

28. Shubert TE, Goto LS, Smith ML, Jiang L, Rudman H, Ory MG. The Otago Exercise Program: Innovative
Delivery Models to Maximize Sustained Outcomes for High Risk, Homebound Older Adults. Front
Public Health 2017;5:54.

29. Martins AC, Santos C, Silva C, Baltazar D, Moreira J, Tavares N. Does modified Otago Exercise Program
improves balance in older people? A systematic review. Prev Med Rep 2018;11:231-239.

30. Shubert TE. Improve your Health with Otago Exercise Program [online]. Available at: https://givefit.
org/balance-better-landing. Accessed 12 May 2020.

31. Roy B. Monitoring your exercise intensity. ACSM Health & Fitness Journal 2015;19:3-4.

32. Borg GA. Psychophysical bases of perceived exertion. Med Sci Sports Exerc 1982;14:377-381.

33. Robertson RJ, Goss FL, Dube J, et al. Validation of the adult OMNI scale of perceived exertion for
cycle ergometer exercise. Med Sci Sports Exerc 2004;36:102-108.

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 17
34. Kraemer W, Looney, D. Underlying Mechanisms and Physiology of Muscular Power. Strength and
Conditioning. Strength and Conditioning Jourrnal 2012;34:13-19.

35. Zaleski AL, Taylor BA, Panza GA, et al. Coming of Age: Considerations in the Prescription of Exercise for
Older Adults. Methodist DeBakey Cardiovascular Journal 2016;12:98-104.

36. Burnet K, Kelsch E, Zieff G, Moore JB, Stoner L. How fitting is F.I.T.T.?: A perspective on a transition from
the sole use of frequency, intensity, time, and type in exercise prescription. Physiol Behav 2019;199:33-34.

37. Okkersen K, Jimenez-Moreno C, Wenninger S, et al. Cognitive behavioural therapy with optional graded
exercise therapy in patients with severe fatigue with myotonic dystrophy type 1: a multicentre, single-
blind, randomised trial. Lancet Neurol 2018;17:671-680.

38. Ranasinghe C, King NA, Arena R, Hills AP. FITTSBALL - a dynamic tool for supervision of clinical exercise
prescription. Disability and Rehabilitation 2019;41:3216-3226.

39. Primack BA, Carroll MV, McNamara M, et al. Role of video games in improving health-related outcomes:
a systematic review. Am J Prev Med 2012;42:630-638.

40. Kirwan M, Duncan MJ, Vandelanotte C, Mummery WK. Using smartphone technology to monitor physical
activity in the 10,000 Steps program: a matched case-control trial. J Med Internet Res 2012;14:e55.

41. Vandelanotte C, Spathonis KM, Eakin EG, Owen N. Website-delivered physical activity interventions a
review of the literature. Am J Prev Med 2007;33:54-64.

42. Bent B, Goldstein BA, Kibbe WA, Dunn JP. Investigating sources of inaccuracy in wearable optical heart
rate sensors. NPJ Digit Med 2020;3:18.

43. *Adapted from Exercising with a Muscle Disease, MDA, 2009, https://www.mda.org/sites/default/files/
MDA_Quest_Excercise_Package_2009.pdf

EXERCISE GUIDE FOR PEOPLE LIVING WITH MYOTONIC DYSTROPHY MYOTONIC DYSTROPHY FOUNDATION
www.myotonic.org 18
The mission of the Myotonic Dystrophy Foundation is to enhance
the quality of life of people living with myotonic dystrophy and
accelerate research focused on treatments and a cure.

663 Thirteenth Street, Suite 100, Oakland, California 94612

415.800.7777 | [email protected] | www.myotonic.org