Control Trumps Fear When it Comes to Adherence to Exercise in Cystic Fibrosis

Welcome back!

I’m getting a lot of ideas for posts as I prepare for this talk in a couple of weeks at the NACFC in Minneapolis.  I am speaking about motivation and exercise, one of my favorite subjects, and am quite happy to be doing it.

Today I reviewed an article published in Thorax 2004; 59: 1074-80, by Moorcraft et al, entitled Individualized Unsupervised Exercise Training in Adults with Cystic Fibrosis: a 1 year randomized controlled trial. Here are a few reasons why this is a well designed study and one to believe:  1) it is (in CF terms) a pretty long term study.  Most others are only weeks to a few months in duration. 2) It was randomized, a short-fall of many other exercise in CF studies. 3) After an initial training session, it was unsupervised and the exercises (though structured by a trainer) were done at home–so the positive results are  good news about adherence and sustainability of a program.  The patients were, however, given frequent contact by phone and/or clinic and were actively encouraged and motivated to continue.

The results were indeed positive.  After a year, a significant training effect was shown in the training group and there was a lesser decline in lung function in those trained when compared to controls. But, as important as that is, that is not why I am writing this.  The most important point of the article to me was in the summary, where the authors state:

“Every effort must be made to adapt the exercise to fulfill the wishes of the patients and integrate it with their lifestyle.  This study shows that benefit can be obtained with an individualized home-based programme.  In the long term, motivation must be sustained by the individual and the clinician must strive to engender an exercise habit.  A flexible approach to encouraging exercise and an enthusiastic approach from the staff should not be underestimated.  A feature that favours exercise adherence in CF is that the patients perceive it as an area over which they have control and that, unlike other treatments, fear of their disease does not drive adherence to exercise (my emphasis).  Instead, they have a positive outlook on exercise regarding it as a normal activity which they can enjoy.”

I don’t know about you, but I think that fear sucks.  It doesn’t feel good.  It incapacitates me when it comes to rational thinking, and over the long haul, it frankly shrinks my brain.  It is true that sometimes fear works to motivate.  If that weren’t true, I probably wouldn’t have made that phone call to my doctor when I coughed up blood.  I feared for my life, and a phone call was made.  Fear works in acute situations.  It is the flight aspect in the fight or flight response to the mountain lion on the bike path.  Ok, bad analogy.

The point is that as a long term motivator, fear is a BAD choice.  Chronic fear leads to increased stress hormones which lead to depression and brain shrinkage.  Neither helps with adherence to any kind of program, let alone one where you must insert significant energy, as in an exercise habit.

Control, however…now THAT is powerful.  To me, seeing and feeling my body respond to exercise over the long haul is not so much about control as it is empowerment.  I feel actual empowerment over at least part of my body…and this is not a common feeling for one living with a disease such as cystic fibrosis.  This empowerment leads to confidence in other areas as well, and makes one think twice about negating the effects of all that work by, for instance, missing treatments.

Thinking about going to the gym or going out for a run just like any other “normal” person makes me feel more “normal.”

Now think about a kid…an adolescent with body image issues and control issues who is angry and in denial about living with CF.  How helpful do you think a little dose of empowerment and normalcy might be?  Trying to instill a little fear into him or her would lead one direction…the one you don’t want to go.  Helping them to feel good about how well they respond to an exercise program and encouraging them to exercise because it is what we ALL should do…that works!

Running From Depression

A recent study by Cruz et al, “Anxiety and Depression in Cystic Fibrosis,” (Semin Respir Crit Care Med 2009; 30: 569-578) came across my desk the other day.  Oddly, I was in the middle of creating a talk about exercise and was on the exact slide where I talk about my favorite book on the subject of exercise, Spark, by Dr. John Ratey.

Ratey is a psychiatrist at Harvard and one of his areas of expertise is the neurochemistry of exercise.  I read this book when it first came out and have practically forced most of my clients and several family members to do the same.

The Cruz study points out in grave detail the increased prevalence of both anxiety and depression in people with cystic fibrosis, noting that these have important consequences, including poorer disease outcomes and lower scores on measures of quality of life.  Depression especially wreaks havoc on adherence.   It makes sense, really.  When you are depressed, it is very easy to blow off treatments.  When you don’t care, why bother? When you are consumed with anxiety, a trip to the gym is not the first thing you think about doing.

After these grave facts are discussed, the authors conclude that better screening for depression and anxiety should be done on patients with CF, and treatment given to those with symptoms, including medication or therapy (or both).  I would add one more tool to the bag, one that in fact would also likely work as a preventative measure.  And…it’s free (a big plus these days).

If Ratey is to be believed (and he gives sound reasoning and research to back up his material), the BEST time to head to the gym or lace up your walking shoes is when you are blue and don’t feel like doing anything.   The reason is that exercise acts as an antidepressant.  In fact, exercise is nature’s perfect antidepressant…with no side effects.  The reasons are complex, but I am going to try to simplify:

First and foremost, to call “depression” a disease is like calling a “cough” a disease.  A cough is a symptom that something is wrong.  Perhaps you have asthma.  Maybe you are choking on a marble.  It could be that the air is extremely polluted and all sentient beings are suffocating.  The bottom line is the cough tells you that something is wrong.  The underlying cause is yet to be named.

In the same way, depression is a symptom.  Many things can cause depression: pain, stress, medications, trauma, addiction, AND altered neurochemistry, to name a few.  Just looking at the last one, the brain’s chemistry can be messed up in completely different pathways and yet the final result can look similar.  This is why a medication that blocks the re-uptake of serotonin may work on me, but not you.  Someone else may only respond to a medication that increases Dopamine…or Norepinephrine.  The names are not important.  What is important is to understand that the whole thing is very complex.

And yet, one thing that we all can do at some level, exercise, seems to be able to jolt the brain back into balance.  It seems to regulate the neurotransmitters that antidepressants target….all of them…and at just the right dose.

Almost immediately when starting to exercise vigorously, norepinephrine is elevated.  This is the wake up and get going chemical that also works mysteriously on boosting self-esteem.  Also, dopamine, the brain’s attention system and regulator of feelings of well being, is elevated.  Finally, the well-known chemical serotonin, important for mood, self-esteem and impulse control, bumps up.  And to add frosting to this cake, endorphins are made within the brain upon exercise, and we all know what endorphins do…

So that’s the chemical story.   But there is an architectural one as well.  Exercise causes release of something called BDNF (brain-derived neurotropic factor), which Ratey calls “Miracle-Gro for the brain.”  This, and other neurotropins cause the brain to a) make new cells, and 2) create and foster new connections between brain cells.  As he explains, depression is caused not just by a lack of neurotransmitters, but also by a lack of connections within the brain itself.  BDNF fixes this.  Exercise releases BDNF.

Yes we are at high risk for depression.  And yes, depression is very bad for compliance with a complicated medical regimen.  Sure, we could take another pill or two or three (and some of us may need to) to combat depression.  But one easy thing to try right now is to move.  Every day.

How Important is “Quality of Life” in CF?

A couple of months ago, I asked very distinguished panel of CF care providers whether they thought, 1) that the scientific literature was compelling enough to persuade them that exercise should be a routine part of CF care, and 2) do they promote exercise in their clinics?

I was a bit surprised to hear that most were not convinced by the evidence to date, but happy to hear that all thought that exercise was “a good idea.” Not many had formal exercise programs or promoted it vigorously (other than Dr. Strandvik from Sweden). But they all agreed that it was good to move. Hard to disagree with that.

Now, I understand the caution engendered by this lack of conviction. After all, I was a scientist once. It takes multiple, repeated long-term studies that are designed with a matched control group, huge numbers of patients that are randomized as to who gets the intervention and who are the controls, and double blinded (neither the patient nor the doctor knows who is getting the “intervention,” to convince this crowd. But a study looking at exercise and CF can’t be huge (think about it…how many of us are there?), can’t be “blinded” for obvious reasons, and are extremely hard to create and fund for “long term studies.” The longest so far is a 3-year study from Toronto (oh yeah…that’s the one that showed pretty convincingly that regular aerobic exercise DELAYED decrease in pulmonary function in CF; Schneiderman et al, 2000). Most of the reported studies are 3 to 6 months in duration.. It’s hard to show much after only 3 months, and yet, it’s been done. Just not enough for this crowd.

So, instead of looking for irrefutable evidence that exercise improves lung function in CF, or that it increases mucus clearance, or that it prolongs life (all great questions that deserve more study), let’s ask a basic question that I believe HAS been answered. Does regular exercise improve the quality of life in someone with cystic fibrosis?

The answer is a resounding YES. Several well-designed studies have shown that increasing exercise capacity and tolerance in those with CF improved measures of QOL (quality of life) or QWB (quality of well-being). (Kaplan et al 1989, deJong et al 1997, Klijn et al 2004, Enright et al 2004). These studies include both children and adults.

To me, quality of life is worth improving. Yes, it is great to fund study after study looking for small molecules which correct the basic defect, or to find better antibiotics, or better ways of combating over-exuberant inflammation, or ways to thin mucus and clear it more effectively. But while all of these (and more) are in the pipeline, what about those of us in the trenches? Some of us may not be able to wait. If there are ways to improve our lives, our self-image, our body-image, our self-esteem and self-efficacy RIGHT NOW, shouldn’t these ways be encouraged? Shouldn’t studies about this be funded? Shouldn’t this very simple (I said simple, not easy) and inexpensive intervention be pushed HARD in our clinics?

I think so, and I’d like to hear what you think. Please leave a comment.

The Pros and Cons of Working Out at a Gym

I like to start an article off with a bang!

I read an article online a couple of days ago entitled,  “The Four Germiest Places at the Gym,” and it made me a little ill.  You can read it for yourself (I recommend this), but in a nutshell, you want to avoid public yoga mats, dumbbells, bike seats, and shower floors and walls.

Now I don’t know about you, but I actually touch dumbbells when I go to the gym.  Not only that, but I always have to adjust the exercise bike seat height!  Now, I can definitely avoid yoga mats (I bring my own), and I rarely (by rarely, I mean never) use a locker room shower anymore.  Still, the article got me thinking about the good and bad points of public gyms for someone with CF.  So, here’s my take.

THE PROS

1)  The first that come to mind is obvious, and the video above is a perfect example:  PEOPLE WATCHING!  Let’s face it, treadmill running, or elliptical training, or stationary cycling, or (fill-in-the-blank) for 30 minutes at 70% of your estimated maximum heart rate can be BORING.  Watching those around you, especially when they are doing unusual things, can be very entertaining.

2)  Variety of equipment:  My gym is a great example of this.  I could be there all day, and not have enough time to try every machine.  It’s mind blowing.  For an exercise nerd like me, it’s like being a kid in a candy shop!  Chest day, you say?  Well, let’s see…I can use dumbbells, or barbells, or cables, or stack machines, or take a group weight lifting class.  The possibilities are endless.

3) Vicarious experience:  If you are short on inspiration or motivation, the gym can be a perfect remedy.  All you need to do is look around.  There are always people there who can provide inspiration.  You can see yourself in others, and aspire to push yourself a little harder.  When I see a woman who can do 10 pull ups, I am both impressed and motivated to work harder, because, darn it, if she can do it, so can I!

4)  Variety:  Let’s say you get sick of your “usual” aerobic or lifting routines.  Check out the group classes!  Again, if your gym is like mine, you can choose from anything from “Zumba” (I don’t know what that is…it sounds like a soup to me) to kickboxing to group “body bar” classes to yoge to (fill-in-the-blank again).  Never even THINK of a boring exercise session again!

5)  Social connection:  Working out alone, either jogging or lifting weights in your living room, is kind of lonely, isn’t it?  A gym is a much more social experience, even if you don’t know anyone around.  There are people there!  You can talk with them, or not, but you are not alone.  You might even make friends with people there.  Some people have hooked up romantically after gazing from afar for months at the gym…

6)  Guidance:  Let’s say you have no clue what you are doing, for instance.  At a gym, you can a) watch what others are doing on the machine in question, or b) ask for help.  There are people who get paid to answer your questions.  And there are people who aren’t getting paid for it who will answer your questions.  And, of course, there are people who want to answer all of what they perceive to be your unspoken questions (but they go in the other column).  Last, if you have the cash, there are people you can hire (personal trainers) to teach to what to do and set up a program designed specifically for you.

THE CONS

1)  This one is easy.  I alluded to it earlier.  GERMS!!!  Gyms are germ havens.  Ask around, I bet you can’t find any self-respecting microbiologist at your gym.  They know better.  Now, this freaks out many “normal” people (i.e. CFTR-able).  Imagine how it might affect those with CF!  If you have a transplant, forget about it…there’s no way you should go into a gym.  So this is serious business.  I go back and forth on this, and I am addicted to my gym!  The best I can say is if you are like me, and can’t stay away from your  gym, wash your hands…wash your hands…wash your hands!!!  And until you can wash your hand after touching the machines or weights, keep your hands AWAY FROM YOUR FACE.

And avoid the locker rooms…and the yoga mats.

2)  Inconvenience:  Getting dressed, packing your bag and water, finding your keys, driving down the block, returning home because you forgot your membership card, and driving to the gym take time.  For some, this series of events take longer than the entire workout.  This is not efficient use of time, nor is it good for the environment.  The worst part is that often this series of events presents an insurmountable obstacle to the exercise itself.

3)  Being “Noticed:” This one is only sometimes the case for people with observable health issues:  When I look or sound sick (you know…”the cough”) it can be embarrassing to exercise in public.  Once I was at the end of a course of IV antibiotics, and I went to the gym with my PICC, infusing Tobramycin.  I was on the treadmill, jogging I think, and this guy came up and asked what was wrong with my arm.  “Nothing,” I responded, “I’m just getting antibiotics for a lung infection.”  I wish I had words for the look on his face.  He truly thought I was a nutcase that should perhaps be carted off in a straitjacket.

At least I wasn’t dancing.

First Sick and Happy Video!

More to follow with real exercises…

Five Reasons You Must Start Resistance Training Today!

I love list posts.  They are so easy to write, and even easier to read.  If only adopting the habit they propose were so easy…

But in this case, it is!  Resistance training is not difficult to do.  You don’t need to join a gym.  There is no requirement for fancy equipment or expensive clothing.  While a routine does take a little bit of time, you will begin to see and feel significant results in as little as 20 minutes 2 or (ideally) 3 sessions per week.  You could multitask, and do your routine while watching Scrubs reruns.  How simple is that?

Your own body weight can provide all the resistance you want or need, or if you are so inclined, you can purchase some very reasonably priced resistance tubing to use in your living room.

Here’s the trick.  Don’t fall for the fitness magazine articles that suggest complex moves, or drop sets, or supersets, or unbelievably crazy-sets.  Pick exercises that target multiple muscle groups like squats, lunges, front and side plank, or good old fashioned push-ups, and just start doing them!  Here is why you should start today:

Reason 1) Resistance training is a friend of your metabolism.  Why is this?  As you begin to overload your muscles beyond what they are used to, you injure them slightly (don’t go for major injury…that doesn’t do any good at all).  You cause little tiny microtears in the muscle fibers, and this is why you are sore one or two days later.  But this is good news, because as your muscle fibers heal, they become stronger and bigger.  You add muscle mass, and over time, this increases your metabolic rate.

How does that work?  Body fat doesn’t do much.  It just sits there and looks back at you in the
mirror.  It doesn’t use up much energy.  Heck, it doesn’t even need much of a blood supply since it requires so little maintenance.  As a result, it burns very few calories.

On the other hand, muscle is very active.  It requires food (glucose and amino acids) and burns tons of calories by just being there.  Clearly, if you want to be a lean, mean, calorie burning machine, you want as much muscle as you can get.

Reason 2) Muscle, because it requires glucose and amino acids, is very sensitive to insulin.  Insulin opens the doorway to  to the little muscle cells, so glucose and amino acids can get in.  If you are insulin resistant, as in Type II diabetes  (and possibly CFRD), lifting weights will increase your insulin sensitivity as you build muscle mass.  A finely tuned insulin sensitivity mechanism is required for a stable blood glucose level, which leads to good health.

Reason 3) This is a big one for me, and maybe you can relate.  Building muscle and feeling and being strong physically is one area of my life where having cystic fibrosis doesn’t even matter!  My lungs may not be the best in the gym, but I will take on any woman my age in a push up or pull up contest!  This is a very empowering feeling…I have at least a modicum of control over my body which is otherwise at the mercy of my lung status.  Now, some days my lungs even interfere with my time at the gym, and that is OK.  I know that when I recover, I will be back, strutting around the gym with the big boys, knowing that my muscle fibers are no different than theirs:-)

If you have an illness other than CF, lifting may just provide the same benefit.  Lifting weights is a very black or white thing to do.  You do it and you see and feel results in as little as two or three weeks.  You have control of this.  It may not feel like you have control of much else, sometimes.  But you do have control over this.
Reason 4) More and more studies are showing that well-designed resistance training programs in post-treatment management of cancer patients and survivors are beneficial in improving health status and quality of life.   This is true in other chronic diseases as well.  Weight training is anabolic, meaning it builds up the body.  Often, treatment for illness is catabolic, or breaks down the body (think steroids or chemotherapy).  While these treatments are necessary, we can counter their bad side effect of breaking down tissue by weight training.

Reason 5) Weight training is fun!  Ok, maybe I’m in the minority thinking this, but stand by this statement.  When you get over the initial “I have no clue what I’m doing,” and move through the “Oh my God this huts,” you begin to see improvement!  And this is fun!

Are you ready to begin?  I’m starting a YouTube channel where I will teach easy, and very modifiable exercises that anyone can start doing today.  Check it out, and subscribe today!

Can I Exercise When I’m Sick?

Not that I’m an expert on this… The last time I had a PICC line I ended up with a DVT (blood clot) in my arm and had to be on blood thinners for 3 months.   Why?  Well, I’m not exactly sure, but it could be because I didn’t want to atrophy away, so I was doing push ups as well as my daily walk.  Dumb.

So maybe this does make me an expert because I definitely know what NOT to do.

Here’s my take:

If you have a PICC, NO UPPER BODY RESISTANCE TRAINING NOT EVEN PUSH UPS WHAT ARE YOU THINKING?!  But when you start feeling better after the first few days of “happy juice,” as I now call it, you can definitely go out for a nice walk every day.  Or get on an stationary exercise bicycle.  Basically, the bottom line is don’t push it too hard, but it is good to move! If you don’t move for three weeks, it will be very difficult to get motivated again, and you will lose muscle mass, a very bad thing indeed.  Be gentle.  Be mindful.  But, move.

If you have a fever, no exercise.  Rest.

If you are just coughing more than usual, but don’t feel too bad…well, this is a tricky one.  Are you losing weight?  Are you eating well?  Do you have energy?  This is probably a good time to call the clinic, let them know what’s going on, and ask for your doctor’s opinion on the exercise question.  Do I do that?  No (well, I ask myself and I usually tell myself to quit being a wimp and do some push ups). But I’m learning to not listen to that inner little sergeant.

Last week (Week One), was the “walk every day” week.  My dogs loved it.  I also did daily Qigong (gentle stretching).

This week, I’m adding some lower body exercises (squats) and curl ups to the above.  Feeling good!  Zero cough.  I love this happy juice.

Next week, who knows…but it won’t include push ups.

Exercise for Preschoolers and Elementary School Children With CF

FIRST, THE FACTS

First of all, if there is ever an easier time to get kids to move…this is it. Just as before, encourage the notion that exercise is fun.  Being active is fun.  Playing with your family and friends outdoors (or indoors)  vigorously is fun!  The neural pathways you help your child establish now will be with them into adulthood.  They can be health promoting pathways, making an active lifestyle easy to maintain…or , they can be sedentary living pathways, which will be difficult to overcome.  Your power to promote long lasting behaviors at this stage is enormous.

While the target goal is to have your child accumulate at least 30 minutes of moderate to vigorous activity each day, remember that this does not have to happen in one session.  In fact, kids are wired to be active in short bursts, so go with that, and break up activity sessions into 5-10 minute chunks.  Go out and play hide and seek with them…or tag…or whatever makes their (and your) hearts pump and lungs work hard.  The “active time” can include swimming, soccer, basketball, biking, jumping rope, rollerblading, running/walking, jumping on a pogo stick (one of my favorites), or rebounder, or safely enclosed trampoline.  Really, you are limited only by your and your child’s imaginations.

Preschool and elementary school aged children can also build strength.  They aren’t ready to pump iron at the gym with you, but with a little creativity, you can help them strengthen their back extensors and other core musculature.  In a soon to be revealed video, I will demonstrate some easy ways to do this.

Habits are being formed now, as I said before, and this also applies to posture.   Why is posture so important to think about in cystic fibrosis?  Several reasons come to mind.  One, optimizing posture optimizes usable lung tissue.  Think about what ends up happening as we age (unless we work hard to avoid it).  Our upper backs tend to bend forward, as our shoulders roll forward from years of typing, driving, working at a bench, or whatever.  At the same time, our lower backs tend to become more “swaybacked” as the pelvis rolls  anteriorly from years of sitting and subsequent tightening and shortening of hip flexors.  The result is that the upper areas of our lungs get, to use a technical term, scrunched, and we get chronic low back pain.  Both of these are bad.  Compressed lung tissue is bad in CF, because compressed  tissue collapses and, 1) isn’t used to exchange gases and, 2) is a set up for mucus plugging and infection.  Back pain is bad in CF for the same reasons it is bad in anyone…it hurts and leads to inactivity.   It is also bad because with low back pain and weakness comes abdominal muscle weakness, and inefficient and weak cough mechanics.

So you are probably wondering how to avoid all of this.  Start strengthing back extensor muscles early, as well as all of the core muscles that surround the trunk!  I have come up with several examples of these in the aforementioned video (coming to your computer screen soon).  Many of these are exercises that adults do, but have been slightly modified and given cute names.

HOW DO I CONVINCE THE LITTLE BUGGER

Finally, a word about motivation during these fun, but sometimes difficult years.  Let’s be clear here…sometimes it’s more about motivating yourself to be consistent and unwavering about establishing exercise as a  “family value” more than it is about motivating your child to do it.  Parenting is hard (tell me about it) and can be draining.  Convincing a young child to do what you want can be like herding cats.  Sometimes “motivating” them really means “bribing” them.  Clearly, you have to pick your battles, and exercise may not be the most important thing to focus on every time.  The point is, at this age, you are aiming a moving target.  Just because a trick works one day doesn’t mean it will work the next.  You need to have a Plan B and C ready.

COMMON TRICKS, I MEAN STATEGIES

Enticement is a wonderful tool. Giving a  “reward” for doing their exercise can be extremely effective.  Pre-school kids will do the most amazing things for a sticker or a small bouncy ball.  A 5, 6 or 7 year old can be told to get 5000 steps on their pedometer (that you gave them as a reward for exercising) before they get to watch their favorite cartoon.  (I discovered the hard way that after this age, the kids quickly learn to just shake the pedometer when you aren’t looking).  An older 4th or 5th grader may gladly do their exercise if they are told that there will be no screen time until they do.

Calling exercise by a different name is sometimes effective.  Personally, I think it is a lovely word, but many people hate exercise and like to say so.  Kids overhear this and can easily associate “exercise” with pain and discomfort.  So, “Let’s go play on the trampoline!” sounds better than, “Go exercise on your trampoline.”  “Let’s pretend you are a wheelbarrow!” sounds fun!  “Let’s make your muscles stronger!” sounds like work.  “Let’s make an obstacle course!” sounds  much more exciting than “Let’s do interval training!”

Competition works well for some kids and completely turns off others.  One of my kids hates it and refuses to play.  The other will do anything if I tell him I’m going to time him.  You know your own child and if this will work.  If it does, you can have races or see who can jump the farthest or the most without missing (jumping rope).

Finally, video games that encourage movement are available and fun!  The Wii has several active games,  both the games that come with the Wii as well as Wii Fit and others that really get you moving!  Dance, Dance Revolution is another great example of this and more are being created every day.  Video games are here to stay.  I think of this with the Aikido mentality of “using the opponent’s force to get what you want.”  If you can, get a Wii or other console system, and allow the games that encourage movement.  Play them with your kid!  Not as a substitute for other exercise, but as a complement.  After all, they are fun!

Creative Ways to Make Exercise Fun For Your Child

In the last post, I described in exhausting detail why you want your child with cystic fibrosis to exercise every day (unless they are sick, of course).
In this article, I will outline some specific tips about age appropriate activities that are both fun and healthy for your child as he or she grows through the baby/toddler years.   The next post in the series will so the same for preschool and elementary school aged children.  Next, I will deal separately with the teenage through transition stage.

Focus On Play With Your Baby and Toddler

Just look at the face of this child!  Does she look happy or what?  The first couple years of life should be fun, fun, fun when it comes to exercise.  The best breathing exercise I can imagine is that of a baby laughing uncontrollably!  It’s exercise!  Really.  If you don’t think I’m right, watch this video (heck, watch it anyway…it’ll make you smile).

Stability Ball Games

I am a big fan of stability balls like the one shown at the top of this post.  They are great tools to use for home exercise.  They only cost around $20 or so, and can replace a bench as well as serve as a prop in many, many core strengthening exercises.  Not only that, but imaginative kids can come up with all kinds of games to play with these things. Take it from me, who has had to replace her “this-is-mine-you-are-not-to-use-it- for-any-reason” ball at least five times due to poppage or fly over the fence-age.

For a baby or toddler, I highly recommend holding him or her as you bounce gently on the ball, making sure it is fun and not frightening.  Hint:  Get the “burst proof” variety when you buy a ball.  It’s a bit more expensive, but worth it unless you want to pay for years of therapy.  You can also do it like the father in the above picture (if you have a good grip).  When I saw this picture, I immediately thought, “Wow, what a great opportunity for some light chest compressions if this kid had CF.”  Yes, I am a bit twisted.

Another way to do this same thing without hands on assistance is to put your baby in a doorway jumper and watch them go as you cook dinner.  Now if they could rig up a teenie little Vest to put on Baby while in this thing….

Strengthen That Little Core

There is not a more overused word in the fitness industry than “core.”  Well…maybe “dude.”  The core includes all of the muscles that stabilize the spine and move the hips.  If you understand anatomy, you know that this includes a lot of muscles…not just the abdominal muscles that create your six-pack abs.  The core includes all of the para-spinal muscles of the back, all of the abdominal wall muscles, the pelvic floor muscles and the hip flexors (psoas and quadriceps) and extensors (gluteals and hamstrings).  So, really, the core includes a large percentage of the body’s musculature.

Why does your little tyke need a strong core?  First, we all do.  But in addition, it is important to have a strong core when you are gearing up for a life of coughing. Ok, that sounded pessimistic.  I don’t mean it that way.  But while we are waiting for the ultimate CF cure, there is a good chance your child will cough more than the average kid.  Over time (believe me) this takes a toll on the back, the pelvic floor, and the chest wall.  Starting your child off in life by strengthening this area is a wise move.

Now is not the time to encourage sit ups, though.  You encourage back extensor (those spine stablizers) muscles to work by putting your child on his or her tummy.  Babies naturally arch up to look around…they do the baby version of locust pose in hatha yoga.  They know what to do.  So tummy time is important for your baby.  Just remember to keep in mind that if there are any issues with reflux, it is best to wait a couple of hours after a feeding.

Speaking of yoga, it is never too early to start working on chest wall flexibility.  When your child is slightly older, old enough to watch you and copy you, or watch a video, there are some great yoga for kids products out there.  The poses have fun names, usually based on animals, and are fun to do with them.  Itsy Bitsy Yoga for Toddlers and Preschoolers by Helen Garabedian and Little Yoga: A Toddler’s First Book of Yoga by Rebecca Whitford tare both geared for toddlers.

The most important thing to do with your child at this age is to help them associate exercise with fun and bonding with you.  The earlier these neual pathways are established, the better.  When pre-school and elementary years come, this continues to be the most important thing.  But more on that next time.

How to Shake Up Your CF Kid’s Exercise

Ok, first of all, I want to say that I don’t normally use the phrase “CF kid.”  Your child is not a “CF kid,” nor am I a “CF adult.”  I am an adult.  CF is one of my challenges…as is coming up with good titles for blog posts. It just didn’t sound right to say “How to shake up your child who deals with CF’s exercise program.”

That said, the purpose of this blog is to talk about living well with chronic illness, and of course, CF is the illness I know the most about.  Self care obviously contributes to wellness with regard to any illness.  But in CF, self care goes to new levels…new extremes.  It may seem to someone who has CF, or to a parent of a child with CF, that to be fully compliant with your doctor would take most of your waking hours.

It’s true…and  this is in part why I stopped working in the real world.  The wasn’t enough time!

So when you hear about the need to add daily exercise to a very long and complex regimen, it stands to reason that the first thought is, “Oh yeah…right…I have time for that!”

However, exercise and it’s importance to health with this disease is so important that I feel an entire series of articles is warranted.  I think that the best way to spread the word is to target first the parents of children with CF, because the earlier an exercise routine is established, the better.  My goals for this series are to first present the reasons WHY exercise is important and why it needs to be established early in life.  Then I will talk about different ways to encourage exercise as your child grows through different stages of both physical and emotional development.  Then I will cover how motivation changes as a child grows older, and how to optimize the methods you use to encourage exercise as motivations change.  Finally, I will discuss the challenges that seem to cloud the way and how they change as a kid moves from toddlerhood to transition to college. Hopefully, I will then present some ideas to work around these obstacles.

Why Should Your Child Start Exercising Today

I have written about the benefits of exercise before, but I don’t mind doing it again.  It is very clear that fitness levels correlate with survival in cystic fibrosis.  This was first shown in 1992 by Drs. Nixon and Orenstein (Nixon PA, et al.  N Engl J Med 1992;327:1785‐8).    No proof of a causal relationship was evident then, but the correlation was intriguing.  Since then, it has been shown that maximal exercise capacity correlates with survival, just as FEV1 does.  In fact, in Europe, routine exercise studies are done in addition to  pulmonary function testing to follow the course of the disease.
It makes sense, really.  Look at the “CFTR-able” population.  Fitness correlates with survival because it lowers the risk of so many health hazards (diabetes, obesity, hypertension, hypercholesterolemia, and several cancers, to name a few).  It also enhances immunity and acts as a buffer to the ill effects of chronic stress.  We don’t know the exact reasons why it helps in CF, but we have some eduacated guesses.

For one thing, and a very important thing at that, exercise promotes weight gain in children with CF.  We are a weird group indeed.  For most of the world, exercise is prescribed to help lose weight.  We even have reality shows based on this concept (The Biggest Loser). But for children with CF, exercise increases the appetite, and as long as good, high energy density food is around, weight is put on!  As I’m sure any parent of a child with CF knows, lung function shows a strong correlation with weight and BMI.  Lungs just work better when kids are closer to their ideal BMI.  Exercise is one tool to use to get them there.

Exercise also is an excellent form of airway clearance.  In fact, we know that exercise combined with a standard method of airway clearance such as the Vest, flutter, or chest PT is better than either one alone.  Is the Vest good?  Yes.  Is it better to do both the Vest and exercise?  Yes.  Can I do just one method?  Not if you want optimal clearance of mucus.

It is even starting to be more clear why exercise helps with mucus clearance.  At the most recent NACFC, I heard a talk given by Stephanie Dwyer from Australia, who has shown in an elegantly designed study that exercise decreases viscoelasticity (stickiness) of CF sputum.  In addition,  her subjects described a subjective improvement in ease of expectoration (coughing up) sputum following 20 minutes of exercise biking.  This is likely due to both decreased “stickiness” as well as increased air flow rates through the lungs.

Dwyer offered as explanation an interesting study done in 2001 (Hebestreit) which suggested that exercise partially inhibited the excess sodium absorption through the ENAC channel, which lead to more water present in the airways following exercise.  Remember, in CF there is both hyposecretion of chloride and hyperabsorption of sodium, a double whammy leading to very dehydrated conditions in the airways, as water follows salt concentration through passive secretion.  No (or little) sodium and chloride in the lumen of an airway….no water secretion….leading to very little airway surface liquid and sticky sputum.

Another reason to exercise early in life (and keep it up) is that exercise leads to better self-esteem and an overall sense of well-being.  As kids with CF enter adolescence, body consciousness becomes a huge issue.  Think back to your teenage years as a “normal” kid who didn’t really have much to deal with other than raging hormones and acne.  Add to it digestive issues, delayed puberty, a weird sounding cough, having to take fists full of pills, needing to go home early to do treatments, strange looking fingernails and, missing a lot of school, and did I mention the digestive issues?
Clearly, if there is anyway to improve on body image and self-esteem, all efforts should be made to incorporate it into the life of a child with CF.  I say start early, because if a pattern has already developed by the adolescent years, they will be ahead of the game when *%&# hits the fan.

Another issue that can to rear it’s ugly head in adolescence is depression.  Kids with CF are not necessarily at an increased risk for this until the teenage years, when body image issues come up as well as questions arise about the future.  The full implications of their disease may not be apparent to them until this time, when they are old enough to read for themselves about CF and what comes with it in adulthood.

Luckily, we have a tool to fight depression that is completely safe, and has been described by Dr. John Ratey in his book, “Spark:  The Revolutionary New Science of Exercise and the Brain,” as like taking just the right dose of ritalin and prozac…without any medications.  And it’s free.  It turns out that exercise has a profound impact on neurochemical changes in the brain.  It can help with not just depression (in many cases as well as an SSRI without the side effects), but also anxiety and with the ill effects of chronic stress.  But wait….there’s more!  It also helps your child learn and improves memory!  I highly recomment Spark to all my clients….and to you, too.  It will not just motivate you to add exercise to your child’s routine, but to yours as well!

In the next post, I will discuss different ways to encourage your child to exercise as they move from toddlers to pre-adolescence, to teenage years and beyond.

Next Page »