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Welcome to Dake's Blog

This blog is designed to give you updates on Dake as he enters his journey to Johns Hopkins/Kennedy Krieger Institue Center in Baltimore, Maryland. This is a clinical trial in research focusing on the heart of Duchenne Muscular Dystrophy patients. This is not a treatment, it is research. Dake chose to participate in hopes for himself and for those who unfortunately follow behind him.

I will also share a little into our lives. Dake wants his story told....

The good, the bad and the ugly......

For more information on the research at Johns Hopkins on Duchenne Muscular Dystrophy scroll to bottom of the blog.

Wednesday, July 11, 2012

Stressed spelled backwards is DESSERTS!

Stressed spelled backwards is DESSERTS!

Stressed spelled backwards is desserts!  This statement helps me sometimes….just knowing it makes me happy and feel better.   I get tickled when the doctor and or anybody who does not know us ask, “do you have much stress in your life?”

  Ohm, maybe a little……but doesn’t everybody?

Ok.  Everybody does have stress BUT what is the best way to channel it or relieve it. I guess I feel like stress is like air in a balloon.  The more air equals more stress.  The balloon grows and grows until it of course burst.  I feel like our family, as a whole, is so good of riding out the storms but we let the air in balloon little by little, day by day until the balloon has reached its maximum capacity and then everyone blows up.

Then, we have a “family” meeting and everyone gets it out.

  We are exhausted from all the “air” that has built up”….

We talked about doing it like once every couple of weeks or so but honestly we are afraid it would be a total world of “overload” all the time. Frankly we don’t have enough emotion energy.

Having to do 95%, (day and night), of another person’s movements is not only hard on the individual unable to complete the movement but the individual(s) who is helping. ….in other words this can equal stress for everyone even on the best of days.

We are trying to work on stress as a whole.  .  Dake is stretching and working out in the pool a couple times a week.   He has been working really hard.  (Water is the best place for a Duchenne Muscular Dystrophy boy to exercise. The water takes the weight off the muscles making it possible for lots of boys to have the sensation of walking long after they are in a wheelchair. Dake swam well as a child.  It was the only physical exercise he could beat his 15 month old younger sister at when they were younger.)  

Another fun fact about Duchenne Muscular Dystrophy is they all float.

This is nice when they can turn over by their selves but not good if they can’t and land up face down.  We have to weigh Dakes legs down in the pool so he can experience a little walking.  We always tease him and say we are with the mafia and this is our version of concrete blocks.

We have all been exercising regularly and eating right for a while now.

 Which is always good….not always fun but good.

Our individual plan for stress is……

 Lyndsey gardens and cooks. Gracey has gymnastics.

Dake retrieves and gets on a computer or goes outside by himself.   David retrieves and starts cleaning angrily. He has football games in the fall.  (I, personally, am not always sure football is a stress reliever….it seem pretty stressful as serious as he takes it.)

I paint.

We all have our outlest but it seems we need more sometimes.

Anyone have any suggestion please send me your comments.

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