Sick and Happy » Wellness

Julie Desch — Fri, 11 Jun 2010 22:36:43 +0000

Have you ever thought it would be kind of cool to be able to meditate, but then a tiny little voice in your head would say, “Are you kidding? Spend 30 minutes focusing on my breath? I’d rather stick a needle in my eye!”

I’ve been there.

But then, 13 years ago, in the midst of one of the more stressful periods in my life, I signed up for a class called Mindfulness-Based Stress Reduction (MBSR). It was an eight-week class that met weekly for two hours, and included one all day “retreat” toward the end of the class, where we practiced in silence what we had been working on over the previous weeks. This was one of the best decisions of my life, and meditation has become one of the most effective tools I have as I continue to live a full and happy life with cystic fibrosis.

This class made such an impact on me, that I have now learned how to teach it. The reason I took the time and spent the money for this training is that I want to teach others with CF how this simple practice can make a difficult and sometimes complicated life just a bit easier to handle.

I took the class (twice) in person (both times in hospitals), and co-taught another eight-week session with my mentor in a hospital in San Jose. Why meditate in hospitals, you might ask?

Actually, the MBSR program originated at the Stress Reduction Clinic, which was founded in 1979 at the University of Massachusetts Medical Center by Jon Kabat-Zinn. Now, it exists in over 250 medical centers across this country as well as in numerous locations internationally. Consistently, graduates of the program report:

Coping more effectively with both short- and long-term stress
Greater self-respect, energy, and enthusiasm for life
Lasting improvements in physical and psychological well-being

You know that having cystic fibrosis does not define you. Yet, it can be hard to find yourself in the midst of treatments, medications, doctor visits, hospital stays, and constant concern over that magic number, the FEV1. Having a chronic illness like cystic fibrosis is stressful. This is just a fact of life.

What is often forgotten is that there is much more that is right about us than is wrong! Using the techniques taught in Mindfulness-Based Stress Reduction, we can develop skills that will help us stay afloat in times of chaos, and get more in touch with aspects of ourselves that are untouched by problems with an epithelial chloride channel!

Common Questions

What is Mindfulness?

Mindfulness is simply purposefully paying attention to what is happening in the present moment, without judgment. The present moment is where life unfolds, and it is only here where choice is possible. By cultivating the practice of mindfulness, you can begin to see where you tend to be on “autopilot,” and learn to use compassion and courage to make conscious choices about how you allow life to unfold, rather than feeling completely out of control. Mindfulness practice is ideal for cultivating greater awareness of the interconnection of mind and body, as well as of the ways our unconscious thoughts, feelings, and behaviors can undermine emotional and physical health.

I can’t focus on my breath…How can I meditate?

The good news is that the leader of the class (me) also has CF and understands this dilemma. There are other ways to use mindfulness to better cope with stress. One does not need to focus on the breath. There are many other ways to anchor the mind. Breath is just a very easy one to teach, and it’s always there. Because I understand that attention to the breath can provoke anxiety, we will explore other ideas.

I can’t go to a class. I have a multi-resistant bug. Or, the corollary: I don’t want to get multi-resistant bug.

The best news yet: This class takes place in a virtual classroom. All you need to attend is a computer with Internet access. If you would like to be able to speak (and this is encouraged), a computer headset is recommended.

What are the details?

This class will be an 8-week intensive training in mindfulness based on ancient healing practices. In addition to the weekly classes, there will be one full day retreat scheduled toward the end of the course. The price of the course is $350, but no one will be turned away for lack of ability to pay. If you would like a scholarship, please contact Julie Desch at Julie@newdaywell.org.

Registration can be completed here.

The mind and body are linked. We know this now through innumerable well-designed scientific studies, and we are learning more every day about how this works. Don’t kid yourself into thinking that you have no input into your health simply because your disease is genetic. When you learn the practice of mindfulness, you begin to experience exactly what this means, and with that understanding, you can begin to see some wiggle-room around unhealthy habits of the body and mind.

Give it a try by registering now

Class description

Class schedule

Hot flashes, Hand-Me-Downs, and “Honey, did you see me take my ___________ today?”

Julie Desch — Tue, 16 Mar 2010 20:55:24 +0000

I don’t know about you, but I’m getting older. Last I checked, I was well into living my 50th year. Now, nobody has actually ever told me, “Julie, you are not likely to live to be 50,” but having not lived in a cave all of my life, I have received this message loud and clear. So what am I doing here?

Here, for example, are a few random things I hadn’t planned on:

1) Hot flashes and menopause: Isn’t it weird that every time I put on my therapy Vest, I have a hot flash? I don’t think they were designed with this in mind.

2) Wearing hand me down jeans that used to belong to my son: It’s true. My 12 year old son is now giving me his outgrown jeans…and they are too big. I’m trying to grow into them.

3) Forgetting whether or not I have actually done pretty important things: Did I take that pill? Did I inhale Advair? ”Honey, did you see me inhale this?” This is truly frightening.

4) Wondering with fear and fascination what will happen if I actually outlive my disability payment: I don’t think the insurance company was expecting this either.

5) Not being able to see whether the needle is actually going to hit the tip of the Colistin vial: Are they making that bulls-eye smaller, or is it just me?

6) Getting so used to the ringing in my ears, that is seems like part of the radio background: Oh, the years and years of tobramycin….

7) Routinely wondering if it is possible to lose one’s colon down the toilet: Ok, this is a bit graphic. I don’t know what the magic number of hours logged will be, but at some point, don’t you think gravity is going to win?

8) Getting too “old” to run (read: low back and knee pains): I thought the lungs were supposed to go first.

9) Making more cracking and moaning sounds getting out of bed in the am than my 16 yr old border collie as we hobble to the kitchen to make coffee.

10) Wondering if I might outlive yet another dog: I don’t know which to wish for.

11) Living long enough that those foolish years of laying out in the sun on aluminum foil lathered in baby oil has resulted in my wrinkles having wrinkles: Who knew that shins could get wrinkled?

12) Needing a screening colonoscopy: Of course, if we wait long enough (see 7 above), we can probably just examine it directly:-)

Thoreau on Illness

Julie Desch — Mon, 11 Jan 2010 04:29:35 +0000

So I’m walking my dogs tonight, as I often do, while listening to a podcast.

This one was by Joseph Goldstein, who is a Buddhist mindfulness meditation teacher. I do this a lot these days.

Mr. Goldstein must have been reading my mind…that’s all I can say. I was inwardly lamenting the fact that this walk was the first I had moved my butt in four days, as I had come down with some weird virus which seemed to have settled smack in the middle of my left lung. Not only did it hurt to breathe still, but my scheduled Day 1 this week of a research study where I would take an exciting new drug was definitely looking unlikely. Poor me… And the Packers lost, to boot.

Then, I heard a story about Henry David Thoreau. Why was a Buddhist teacher talking about Thoreau? Well, that is a long story, but in short, the podcast was about contemplating things that would “turn the mind toward the Dharma.” Basically, it was a very good talk on impermanence. But I digress…back to Thoreau.

It turns out that Thoreau died at 44, of tuberculosis. I’m thinking he probably had a bit of chest pain, among other things. In the podcast, Goldstein quoted Thoreau as saying something so cool that I came home and googled it immediately. Sure enough, it looks like the statement ascribed to Thoreau was written by his sister in a letter to a good friend, telling of Henry’s life, illness, and death. Thoreau was apparently a very vivacious man, as alive in illness as he was in health. As his sister writes, “he remarked to me that there was as much comfort in perfect disease as in perfect health, the mind always conforming to the condition of the body.”

Perfect disease…what a concept.

Later in the letter, Thoreau’s sister, in talking of her brother’s attitude about his illness, she says that in response to a friend who said as a way of consolation, “Well, Mr. Thoreau, we all must go!” Henry replied, “When I was a very little boy I learned that I must die, and I set that down, so of course, I am not disappointed now. Death is as near to you as it is to me.”

Now you know how this made it into a talk on impermanence.

But still I come back to idea of there being comfort in perfect disease… the secret being in the mind conforming to the condition of the body. I think that means acceptance of what is. Pretty simple…if not necessarily easy. So now I’m going to try to quit feeling so sorry for myself:-)

A GIANT LEAP FORWARD?

Julie Desch — Tue, 15 Dec 2009 05:15:14 +0000

Up until very recently, therapy for CF has been directed at correcting the consequences of the defective CFTR protein (thinning mucus, improving clearance, treating infection, calming inflammation, improving nutrition, etc). Yes, when the gene was discovered in 1989, there was a flurry of research in the area of gene therapy…finding a safe mechanism to insert a copy of the “normal” CFTR gene into the targeted cells, and getting it to work. This proved to be quite an undertaking, and while there is still much being done in this field, the exciting research making news today is from companies like Vertex Pharmaceuticals. With the Vertex drugs and others like them, this is the first time that a therapy—a small-molecule, not gene therapy—is actually directed at trying to correct the defective protein.

In a recent article in Xconomy, Dr. Bonnie Ramsey (who should really be in the CF-caregiver Hall of Fame) responded in part to a question about the Vertex drug VX-770, “Whether it turns out that Vertex is 100 percent successful or not, this is such a giant step forward, it’s like a man walking on the moon.” Walking on the moon…. I remember that day. It was huge. It is my mission with this article to try to explain as best as I can what she is talking about.

To understand why VX-770 and its partner in crime VX-809 make such as giant leap forward for mankind, we first must have two small refresher courses.

CF Mutations 101

There are more than 1,600 known mutations of the gene that causes CF. We now know that each of these mutations fits into one of five “classes.” Each member in a class of mutations causes a disturbance in the sequence from gene (DNA) to CFTR (protein) to functioning CFTR protein at the membrane of the cell (electrolyte transport into and out of cell) in characteristic ways.

In a Class 1 mutation, there is no synthesis of CFTR protein at all. Zilch. This can be the result of a “nonsense” mutation, where a STOP message is read on the mRNA (transcribed from the gene) somewhere along the line, and synthesis of the protein is aborted. Or, a Class 1 type of mutation can lead to a misread of the gene because of a “frameshift”. Think of a frameshift as what happens when you forget to answer ONE question on a multiple choice exam where you have to fill in the answers by coloring in ovals on a separate sheet…all the answers after the one you forgot are wrong…chaos ensues). No CFTR protein…pretty severe CF.

A Class II mutation is one where the gene codes for a protein that is constructed by the cell machinery, but because of the error from an amino acid deletion in the gene, the processing of the resultant protein is messed up. As a result, the protein is defective in folding, stability, and channel gating (the opening for chloride ions is not regulated properly). Because it is unstable, not much of it makes it up to where it is needed at the cell membrane. Our friend, delta F508 is a Class II mutation.

Class III mutations allow for the gene to code for a CFTR protein which makes it up to the membrane, but as a result of this “milder” mutation, the CFTR channel is not regulated or activated properly. G551D is an example.

Class IV mutations are similar to Class III in that a protein is made and gets up to the surface of the cell, but it has “altered conductance.” The ion channel just doesn’t work as well as it should. R117H is an example.

Finally, Class V mutations are those where there is simply reduced synthesis of the CFTR protein.

Clinical Trials 101

You often read or hear about newly developed drugs being tested on humans in “clinical trials.” These trials occur in a series of steps, or phases, that are designed to answer different questions.

Phase I trials are when researchers test a new drug in a small group of people for the first time. These studies evaluate overall safety of the drug, look to find effective dose ranges, and document any side effects.

Phase II trials are designed to evaluate effectiveness of the drug and are generally performed with a much larger group of people. Safety continues to be monitored closely.

Phase III trials are done with very large groups of people to confirm effectiveness, monitor side effects, compare it to commonly used treatments, and collect information that will allow the drug to be approved for use.

Now, back to regular programming:

When gene therapy was not proving to be wildly successful, some companies started to ask if the defective protein could be fixed. Fortunately, a technique known as “high-throughput screening” was being developed just as the need to find ways to tweak the CFTR protein was becoming glaringly apparent. Very simply, high-throughput screening uses automation (robotics and high-speed data processing and control software) to rapidly test hundreds of candidate “small molecules” to find the ones that show a specific biologic activity. In the case of CF, they were looking for molecules that could assist with translation of the RNA “message” to form a CFTR protein normally, or molecules that could assist CFTR in getting up to the membrane, or molecules that could open the dang thing up and let the chloride ions flow as they should.

One company, PTC Therapeutics, found a compound called PTC124, which could to “read through” the STOP sign on the Class I nonsense CF mutations. PTC124 (now called Ataluren) only works for Class 1 (nonsense) mutations, of course, but clinical studies so far are looking very promising. Phase I and II studies have confirmed that Ataluren is safe, orally tolerated, and showed encouraging efficacy. A much larger and long-term phase III trial is scheduled for this summer.

In the case of CFTR protein modulation, Vertex Pharmaceuticals looks for small molecule correctors and potentiators. Simply put, a corrector gets the CFTR protein to the membrane in larger numbers. This would be helpful in the Class II CF mutations such as delta F508. A potentiator works on the protein already at the membrane, increasing its effectiveness. This kind of drug could potentially be beneficial in several of the mutation classes.

VX-770, an investigational CFTR potentiator, is intended to increase chloride ion transport through the defective CFTR protein. Vertex chose to specifically look at people with the Class III G551D mutation in the early phase trials of VX-770, because in this mutation, the protein is already where it needs to be on the membrane. It just needs to be tweaked to open properly. They figured that although only 4% of people with CF carry this mutation, the odds of showing effectiveness would be best in this small group of patients.

And, indeed, they were right! Not only did Phase II trials show a marked (10%) improvement in lung function after only two weeks of treatment, they also showed that both nasal potential difference (PD) and sweat chloride levels moved distinctly toward normalized values (this is exciting because no treatment ever has shown to change the sweat chloride levels). Importantly, when people stopped taking the drug, lung function values, sweat chloride values and nasal PD values returned to their baseline values.

Based on these positive results, Vertex is now initiating larger, Phase III trials. These are designed to look at larger numbers of children and adults with the G551D mutation over a longer period of time. In addition, a Phase II study of VX-770 in patients with CF aged 12 years and older who are homozygous for delta F508 is planned to start in the third quarter of 2009. The hope is that VX-770 will measurably increase the effectiveness of the small amount of CFTR protein that actually makes it to the membrane in Delta F508 CF. If so, then all we need is a corrector to get more of the protein to the membrane, and throw in a dash of VX-770 to create a “Vertex-cocktail” of sorts.

Vertex is hoping that VX-809 is just that corrector (and so am I). This molecule is designed to increase the amount of deltaF508 CFTR protein on the surface of cells lining the airway. It is one phase behind VX-770. So far, Phase I studies have not shown any safety or tolerability issues. A Phase II study of this drug is now underway. Where can I sign up?

In summary, I think the message is this: There is serious cause for hope that one day soon, we will take yet another daily pill (or two…) that is going to improve our lives beyond anything that has yet been discovered. Is it going to “cure” CF? Not likely. A scarred pancreas is not suddenly going to produce enzymes or insulin. Damaged lung tissue is still damaged. I am not suddenly going to have a normal FEV1. But if I knew that a daily pill might slow or even halt the downward slide of lung function that has up until now seemed inevitable…I’d be pretty psyched! I might even volunteer to write an article about it. I only have one suggestion for Vertex Pharmaceuticals. Will you please give these things proper names?

Inner Strength

Julie Desch — Tue, 24 Nov 2009 20:18:20 +0000

If you can start the day without caffeine or pep pills,

If you can be cheerful, ignoring aches and pains,

If you can resist complaining and boring people with your troubles,

If you can eat the same food everyday and be grateful for it,

If you can understand when loved ones are too busy to give you time,

If you can overlook when people take things out on you when,
through no fault of yours, something goes wrong,

If you can take criticism and blame without resentment,

If you can face the worlds without lies and deceit,

If you can conquer tension without medical help,

If you can relax without liquor, if you can sleep without the aid of drugs,

If you can do of all these things,

Then you are probably the family dog.

Posture For the Sick and Happy

Julie Desch — Thu, 21 May 2009 03:48:41 +0000

Click here to view the embedded video.

A few days ago, I uploaded the above video to YouTube. I think posture is an incredibly important thing to think about when living with a pulmonary disease, so I thought it deserved a blog post.

Think about it: When you have cystic fibrosis, or any other pulmonary disease, every single alveolus is precious (“alveolus” is medical speak for the tiny little air sac that, together with it’s millions of comrades, comprise the lung and allow for oxygen exchange–I like to think like a doctor sometimes).

As we get older, (happily, we all are now, aren’t we) there are two forces working against our lungs–gravity, and CF. We tend to think that we have little control over either, but we do! I write all the time about how we can positively influence our health by controlling what we can about CF. We can do our treatments. We can eat nutritiously. We can exercise religiously. We can get enough sleep. We can make sure we go to all of our clinic appointments….etc.

Today, my focus is on how to control gravity! Really.

Now mind you, I like gravity. It does many very positive things! It would be quite a chore to sit here and type without the assistance of gravity. But, gravity can wreak havoc on your body if you don’t learn to use it properly.

Huh?

Our bodies were designed by a genius(es…who knows?). The bottom line is that our bones, muscles, tendons and ligaments all start out aligned to oppose gravity perfectly…until we screw it up. As I sit and type right now, my shoulders are rounded, my upper back is hunched over my computer, and my chin is jutted out over my chest. I know that’s sort of a scary image, but stick with me here.

Look around. Isn’t just about everyone assuming that position? It doesn’t just happen when typing or sitting at a computer all day. We gravitate unconsciously to this position when we play video games (watch your kids do this for a good shock), when we drive, when we play poker, when we slouch on the couch, you name it. It happens as we rush from one thing to the next. Isn’t your chin usually the first thing to enter the room? There are opportunities for this posture all day long! Over time–and not that much time– our default position consists of forward rounded shoulders, hunched over upper backs, and forward jutting chins. Compensating for all of this often comes a sway-back position of the lumbar spine. Suddenly, gravity is our arch enemy.

When you throw your body into this position, the muscles, ligaments and tendons of your back and neck HAVE to work overtime to simply keep you upright. These poor muscles become chronically overworked…and they let you know it. Slowly, the muscles of your upper back become stretched to a position that is not optimal, and they are thus weakened. At the same time, the muscles of the front of your shoulders and chest, low back and hip flexors (remember that sway back thing?) becomes tight and shorter than their optimal length, thus weakened. So, front and back muscles are weak, and working over time to keep you from falling on your face.

Ok, now throw in a chronic cough. Does your back and chest wall go into spasm just thinking about this? Now you understand REASON ONE for establishing good posture when you have CF.

Now for REASON TWO: Conjure up that image again, the one of the rounded shoulders, and slumped upper back. Do you think it is possible to take a full breath using all available lung tissue when in this position? Not a chance. You can use most of your upper lungs when you are collapsed that way.

It is estimated that poor posture can rob you of __% of lung tissue. Now, I don’t know about you, but I need every bit of my lung tissue with every breath I take. I can’t afford the improper effects of gravity1

So watch the video, and try to incorporate at least one or two of these exercises every day. They aren’t hard, and they don’t take much time. They will slowly work to strengthen and shorten those overstretched back muscles, and stretch and strengthen those tight chest and shoulder muscles. The result will be that you will be able to pull your shoulder blades back and down, thus opening your chest and allowing for full expansion of your lungs.

The next trick will be actually remembering to do this! I have some tricks for this, too. Watch for my “mindful breathing intervals” in a blog post coming to you soon!

Five Reasons You Must Start Resistance Training Today!

Julie Desch — Thu, 30 Apr 2009 18:00:15 +0000

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!

The Gift of Giving

Julie Desch — Fri, 20 Mar 2009 18:08:40 +0000

I have recently taken on a new challenge. I love challenges! THis morning I was sent an email link to the most fantastic site, called the 29 Day Giving Challenge. It was started by a young woman with multiple sclerosis, who found happiness (check out her video on the home page) and abundance through the simple act of giving a small gift to someone else every day for 29 days in a row. This has erupted into a huge movement of giving by thousands of people across the world! Imagine.

So today is Day 1. I just joined the Global Giving Village, as one of the 29 Day Giving Challenge member suggested. I think I’ll update my giving here, to keep me honest.

You know, having CF is no picnic. But when I check out these organizations and what they do, it reminds me first, that I really have so much to be grateful for, and second, that the quickest way to happiness is to give to others. Of this, I am certain.

Now….off to the pharmacy for the third time this week!

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THE TRYING, I MEAN ADOLESCENT, YEARS

Julie Desch — Tue, 10 Mar 2009 04:47:45 +0000

My oldest son is about to turn 12, and I am getting a first taste of what is to come. This will require fortitude….and the ability to dance. No, I don’t mean really “dance,” I mean mentally and emotionally dance with him, as he comes into his own. Now, if he had CF and I were trying to get him to exercise as a method of airway clearance and self-esteem enhancement, I would:

Not exactly phrase it that way.
Make sure it included other peers (unless this causes additional discomfort, embarrassment, etc…).
Introduce weight training as soon as he/she is capable of following direction and mature enough to be safe.
Strictly enforce the bike/walk/scooter/skate to school, the store, a friend’s house, etc… rule.
Hope that he/she liked to play soccer, basketball, baseball, or whatever team sport was available, so that a “coach” ordered the training, and not me.
Continue to use enticement, aka bribery, to encourage daily exercise.

Let’s take them one at a time, shall we?

The Wording and the Timing of the Wording
First, the word “exercise” has unfortunately taken on a negative connotation among many of our youth these days. I don’t quite get it, frankly. When I was a kid, the trick was in getting me and my friends to come in at night. Now it is the exact opposite. I suppose it has something to do with the myriad forms of indoor entertainment these days. The problem has become that in trying to entice some form of movement away from electronic screens, we (and by we, I mean I) use the words “You need to get some exercise!” Instant negative reinforcement. “Exercise” is equated with the taking away of something good…screentime.

If you are a psychology buff, you know that this negative reinforcement is not going to promote the behavior (exercise) that you want. A more useful way to reinforce that behavior is to associate something positive with it. Like Pavlov and the dog! Remember, bell…food. So yes, get them away from the screen. By all means. But don’t repeat my mistake, and use getting exercise as the reason why. Bad idea.

Exercise for Preschoolers and Elementary School Children With CF

Julie Desch — Wed, 25 Feb 2009 18:20:30 +0000

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!

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