Destination Fitness

A perspective written by Raymond O’Shaughnessy, who grew up in Montreal in the 1960s when something so natural as physical activity was discouraged for a boy with hemophilia.

As far back as I can remember, being active was as natural as breathing; physical activity was the way to get around and to get ahead, and the guarantee of long life and independence.

I was born with hemophilia in 1960. At that time, it took a strong dose of determination to become involved in physical activities. They were prohibited by my physicians because of the associated risks—repeated bleeding and hospitalizations. Despite these risks, how could I have refused my body’s call, the irresistible need to “be like everybody else”, the profound feeling that I could reach my potential while respecting the limits set by my hemophilia? I learned very early in life that it was up to me to begin this long journey by mastering the tools I needed, listening to and getting to know the marvellous machine of my body so different from that of others.

What didn’t I try? I admit today that the results weren’t always brilliant... but they were never catastrophic and certainly always educational. I learned through my own trials and errors, having no model to follow or support from my immediate entourage. Remember the times! Today, obviously, the context is completely different. Knowledge about hemophilia has advanced to the benefit of all and, at the same time, the resources available to those affected have developed rapidly. As a result, it is now easier to rationally evaluate the risks and the benefits of physical activity for a person with a bleeding disorder. As for me, all I had was my certainty that a fit body with strong and supple muscles would ensure a better future. What’s more, how could I have “protected” myself and gained confidence in myself without “living in” this body and learning its finer points?

It was thus with confidence and assurance that activity became as normal and essential for me as eating and drinking. Touring by bicycle, sailing, canoe-camping, mountain hiking, cross-country skiing... to name just a few... became synonymous with independence and freedom. In my mind, they were associated with travel, but also with well-being because of the very real benefits they brought me, including an important decrease in bleeding episodes. Hemophilia has not ruled my life. Through physical activity I have achieved independence, and health of body and mind. I have experienced adventure and found my place in this world.

Benefits

“I like Irish dancing. The competitions give me a sense of accomplishment and confidence in myself because I am good at what I am doing.”
– an 8-year-old boy with hemophilia

“I felt so much healthier after starting exercise. I was able to participate in more, had more energy and felt so much better about myself.”
– a 15-year-old girl with severe von Willebrand Disease

Physical activity makes us feel more alive. It increases our self-esteem and self-confidence, and develops our interests and hobbies. Physical activity provides a sense of well-being and involvement through the development of social skills, interaction with others, cooperation and healthy competitive spirit. Beyond these very real psychological benefits, physical activity is essential for healthy growth and development. It...

• develops cardiovascular fitness and reduces the risk of heart disease in later life.
• enhances bone formation and reduces the risk of developing osteoporosis. Thirty-five to forty percent of a person’s total bone mass is formed in the four years of adolescence, so this time is particularly important.
• helps maintain a healthy body weight. This reduces stress on joints, and positively affects aerobic power, agility and strength.¹

“Dietary interventions designed to reduce weight among persons with bleeding disorders... may be the most effective prevention for range-of-motion loss besides avoidance of joint bleeds.²”

• decreases the chances of diabetes and high blood pressure.
• develops strong muscles. Between 12 and 17 years of age, boys rapidly gain muscle mass and lose 3-5% of body fat. Good muscle strength and endurance help protect joints from injury. Active children are more likely to become active adults!³
• can even help to reduce/manage chronic pain.

“The Pain Service at the Hospital for Sick Children always recommends appropriate exercise to our patients. We know that exercise makes the body release chemicals, called endorphins, that not only make us feel less pain but also make us feel good. It’s something you can control and do for yourself.”
- Dr. Michael Jeavons, Psychiatrist, HSC Pain Service

• maintains or improves muscle flexibility. This reduces the risk of strains, decreasing the chance of a bleed.
• helps maintain joint mobility by maintaining joint and cartilage lubrication and health.
• maintains or improves joint proprioception (the body’s ability to know where it is in space) which helps prevent injury.
• improves coordination and reflexes which shorten reaction time and help to avoid injury.
• develops motor skills. The more activity experience a child has, the better his motor skills are likely to be, leading to better balance and coordination.
• maintains or improves general mobility and function, and long-term autonomy.

“The older I get, the more I think about this question of autonomy. I am spurred on to maintain my activities and to keep the autonomy I have.”
- a 43-year-old man with hemophilia

• increases blood flow which helps to repair damaged tissues (tendons, muscles, cartilage and bone).
• reduces mental and muscular tension, and increases concentration and energy levels.
• can raise factor levels in some people, thereby decreasing the chance of a bleed.

“I have often observed that periods of sustained exercise, for example, a bike trip, reduce the number of bleeds greatly, while at the same time providing a sense of general well-being, no doubt associated with the endorphins secreted by my body.”
 - a 43-year-old man with hemophilia

For a person with a bleeding disorder, participating in the right activity has a whole range of benefits. But most of all, PHYSICAL ACTIVITY IS FUN!

Risks

Avoiding all bleeds is probably impossible for a person with a bleeding disorder. Avoiding the most serious ones, and repeated bleeds into the same joint, however, is important.

Although most activities carry some risk, there are certain factors that increase the chance of bleeding... and the risk of serious injury.

• Contact – Contact in hockey, for example—between players, with the puck, against the boards—is much greater than in soccer. The risk of injury, therefore, is higher.
• Speed – Motorized sports like snowmobiling and dirt biking carry a greater risk of injury than regular biking because of their speed.
• Force of impact – Football and boxing, for example, are extremely risky, even to people without a bleeding disorder, because of the high force of impact.
• Height – The more height involved, such as in downhill skiing, snowboarding and hang-gliding, the greater the risk of serious injury.
• Unpredictable conditions – Waves in water skiing, and icy surfaces when downhill skiing, are examples of how unpredictable conditions can affect the degree of risk.

Target joints, arthritis, chronic hepatitis, HIV and —most significantly—inhibitors can make selecting and participating in physical activities more of a challenge. Individuals who have any of these complications will require more careful assessment and discussion with the members of the comprehensive care team to determine safe and appropriate physical activities.

Choosing the activity carefully, preparing for it well, and knowing how long and hard to practise it, can help to reduce the risk of injury. Learning to make good choices, often by trial and error, is an important part of growing up and living with a chronic condition such as a bleeding disorder.

“I let the kids choose one activity per season and the other one is automatically swimming lessons. By swimming, they are all getting regular exercise in a safe way.”
– a mother of children with hemophilia

People with inhibitors, who are at high risk of bleeding and who may already have several target joints, must ask this question: Are the benefits of certain physical activities worth the risk? This can only be answered following a thorough discussion between the person with an inhibitor and his comprehensive care treatment team. Decisions must be made on an individual, case-by-case basis.

• I’m just not in good enough shape.
• My joints hurt so much I can’t do any physical activity.
• My knees, ankles and elbows are so badly damaged, there’s no point in trying to get in shape.
• I am too busy to exercise.
• I have a bad knee and I am afraid of hurting it.
• I don’t know where to start.
• I had a bad experience the last time I tried.
• I have no one to exercise with.
• I don’t like exercise. I prefer quiet activities.
• I can’t find the motivation to keep at it.
• My doctor/nurse/ won’t let me.
• It’s too far to go.
• It’s too cold. (It’s too hot.)
• There’s not enough snow. (There’s too much snow).
• There are too many mosquitoes.
• It costs too much.
• There are no facilities where I live; the hours of operation don’t suit my schedule.
• Instructors/coaches are not knowledgeable about the risks to me.
• I know someone who tried _______. He had a bad experience so I’m scared.
• My parents won’t let me do what I want.
• I have an inhibitor.

Each of these statements contains an element of truth, a reason why physical activity may be more difficult and require more thought. Keep your own reasons in mind as you read the next section on choosing the right activities.

Choosing the right activities

“I recently started an exercise program. I feel more fit and I can do more. I am doing yoga, too. It has made me stronger and more flexible.”
– a 15-year-old girl with severe von Willebrand Disease

Choosing the right activities may take some thought, just as planning a trip requires careful consideration. Before deciding where to travel, the first questions you might ask yourself are:

• What places sound interesting?
• Can I travel with my family or friends?
• Do I know anyone who has been there before?
• Can I easily get maps and guidebooks to help me plan?
• Do I want to make a short visit to check out the destination, or do I want to stay for a longer period to learn about the area in detail?
• How much will the trip cost?
• Are there package tours available? Are they really a bargain?

These are almost the same questions you need to consider when choosing fitness activities for yourself or your child.

• What do you like to do? You will be much more likely to stay with an activity if you find it enjoyable.
• Can your family and friends participate? Most people are more likely to continue an activity if they can do it with a buddy or a group of friends. Keep in mind, however, that people may push themselves past their limits to prove they are as good as everybody else. Education and preparation are the ways to limit the risk.
• Have you talked to people who have tried this activity? Get their tips about when to go, where to go, what clothes to wear and who the best “tour guides” are... just like for a real trip.
• Have you done your homework? Travel to a new place can be exciting, but also a bit scary. Advance preparation always pays off. Just as you might read a travelogue or a travel magazine, find magazine articles (parents’ magazines, fitness magazines) and see what others say about the activity.

Parents may be reluctant to let their children be too active, and may find it very helpful to talk to other parents.

“Meeting other parents and adults with hemophilia meant the world to me. Just seeing that hemophilia hadn’t dominated their lives helped us cope.”
- a mother of a child with hemophilia

Teenagers may be keen to try the latest activity so they can be part of the crowd. But is this really a safe “travel destination”? – If you are thinking about joining a fitness class or a sports team, go and observe a few sessions before you commit yourself. See if the pace of the activity suits you. Watch how the instructor or coach deals with those who might be having trouble keeping up; you might have days when you are recovering from a bleed and need to slow down a bit. Will the instructor be considerate of this or will you be pushed past your comfort level?

• What special preparations (or equipment) are needed? Do you need to coordinate your fitness days with prophylactic infusions? Do you need to use antiinflammatory? Do you need to use a brace or support for a target joint or weak muscle? Is there a treatment facility nearby in case you have a problem, or do you need to take treatment supplies with you?

“When engaging in physical activity, my first concern is ensuring I have my factor products close at hand, as well as knowing where the closest medical facilities can be found.”
– an adult with hemophilia

• How much will this activity cost?

A fitness activity does not have to cost any money at all. Gardening, playing badminton in your back yard, shoveling snow or walking to the corner store instead of taking the car are all activities that can improve fitness. If the weather is miserable, a brisk walk in the local mall can be a good activity. Or turn up the stereo and dance in your living room.

Can you afford the time it takes? Can you exercise on your lunch hour or on the way home from work? If you take the bus to and from work, get off one stop early and walk. Increase this to two stops... or more.

Is equipment required? Is the equipment expensive? Can you rent the equipment while you try out the activity? Is good used equipment available?
 

• Beware of “packages”. There are lots of exercise machines on the market that sound too good to be true, and usually are! Many fitness clubs want you to commit for a full year or more. What happens if you get injured and cannot continue? Can you get a refund?

The members of your comprehensive care team are like good travel agents.

• They can help you decide what is realistic for you. Do you have a target joint or an inhibitor that will influence what you can do?
• The nurse can help you coordinate your factor replacement and monitor any changes in factor usage after you start a new activity.
• The physician can discuss with you whether anti-inflammatory medications or pain medications would be helpful or harmful.
• The physiotherapist can show you warm-up exercises and discuss tips to protect sore or stiff joints during different activities. The therapist can also tell you what to do if you get hurt, and advise when you are ready to go back to the activity following an injury.

Keep a travel journal.

• Most people take pictures when they go on a trip. These pictures help them remember what was good (and maybe not so good) about their trip.
• Keep copies of your treatment diary to see bleeding patterns. You will be able to tell if the activity was a good choice or if you should reconsider. If you chose well, you might notice that you use LESS factor. Or you might discover that the activity you really wanted to do has caused more bleeds than you had before. (This is an especially good strategy for teenagers, who may be so keen to try a sport or activity that they don’t listen to parents and team members who try to convince them to stop.)

The armchair traveler

Being able to participate in activities with friends is an extremely important part of a person’s life. What happens when a person’s condition means that he cannot join in? Here are some alternatives.

• He can be the team statistician.
• He can be the equipment manager.
• He could take a first aid course and be the team “trainer”.
• He could take responsibility for organizing the activity.
• He could learn to excel in another sport or activity and invite friends to try their hands at something new.

Supervised or unsupervised activity?

• You may think that playing on a regular team is more risky than a “pick-up” game with friends. Some studies have shown that this is not always the case. Supervised teams usually pay attention to proper equipment and proper technique, and the referee is there to make sure everyone follows the rules. On the other hand, some players, coaches and parents are so concerned with winning that the game is no longer fun.

“He loved hockey but he never played except for ‘driveway hockey’ with his friends and Dad. That was one sport we said ‘no’ to.”
– a mother of a child with hemophilia
 

• There are some merits to following an exercise program in your own home. There are many books and videos that provide instruction. The advantages of this approach are that you do not have to leave your house, the cost is minimal, and you don’t have to buy the latest sportswear. The downside is that you do not get feedback if you are doing an exercise incorrectly. Some of the exercises may be too hard or too easy, and you may be unsure how to modify them to suit your needs. Discuss these issues with your physiotherapist.

It might take you a while to find just the right itinerary for your trip, but keep trying! Remember: it’s never too late to start.

People with bleeding disorders can participate in many activities safely, but some are riskier than others. Before you choose one, use your head!

THINK ONCE!
These activities are usually safe choices for you:

• Swimming • Golf • Badminton • Yoga • Hiking • Hackeysack • Sailing, canoeing • Bicycling • T’ai Chi

THINK TWICE!!
These activities can cause some injuries, but can be fun to do with friends. If you pre-treat, use the proper equipment, and have learned the skills you need, go ahead and participate in:

• Basketball • Baseball • Bowling • Tennis • Skating • Volleyball • Cross-country skiing • Running • Soccer

THINK AGAIN!!!
These activities can cause injury even to people who do not have a bleeding disorder because they involve speed and/or body contact. Even though they might seem fun to do, you need to ask yourself if they are worth the risk of getting hurt. They include:

• Football • Hockey • Downhill skiing • Rollerblading • Karate / Judo • Snowboarding • Wrestling • Boxing • Taekwando • Dirt bike racing • Racquetball • Snowmobiling

There are many things to consider when you choose a sport. Your physiotherapist can help you decide if you should think once, think twice... or think again.

A word of caution: Even activities in “Think once” may be too risky for certain people at certain times, and therefore would become a “Think again” activity. For example, golf may not be appropriate for a person with a target elbow joint. And activities in “Think twice” may be “Think again” activities for a person with serious limitations to movement in a knee joint.

“I like this system of “Think once... Think twice” way better than an adult just telling me what not to do, which, I admit, I usually ignore anyway. It encourages me to be responsible and decide what works for me.”
– a 16-year-old boy with hemophilia