Had I heeded the advice of my parents there are many classes I might have been better served paying more attention to in school. Academics aside, I never realized a song from a fourth grade gym class was important, but it does hold a bit of wisdom for me today. That song is the “Hokey Pokey” and I won’t subject you to a recital, but the repetitive nature of putting your foot and arm in and out and shaking things about led to the line “that’s what it’s all about”.  Little did I know then that there would be meaning in this song for me later in life. 

What makes this song relevant is the nature of caring for a son who has Duchenne muscular dystrophy.  For me, “what it’s all about” is repetition and movement.   Parents and caregivers of boys and men who have DMD realize that many have specific pet peeves that may appear trite to others around them, but often make the guys agitated if not corrected to their satisfaction.  This includes demanding that socks be pulled up so they are exactly even on both legs, clothing tags correctly positioned or removed and many more idiosyncrasies.  Some people suggest a boy with DMD displays obsessive compulsive tendencies, but actual OCD behaviors are done to prevent something bad from occurring.  For my sons and others who have DMD these “habits” appear more a way to manage some aspects in a life in which they have lost so much control.  From the time they are little, guys with DMD rely on others to help them
walk, retrieve dropped items and later assist with all physical activities.  It’s no wonder they agonize over the position of a shirt collar.  Another reason I think this is less about obsession is when a different person is helping some of their quirks become less crucial.

In the morning when I get Matthew up I know full well how to position him in his chair and that the tongues in his shoes need to be pulled up, but anticipating these tasks just isn’t going to work.  As I lower him onto his power chair and pull
his bottom back, I’m certain I aligned him dead center.  Nope, “pull me to the left” is what I hear.  His “little bit” could be measured in fractions of a millimeter.  Too much and I need to scoot him back that quarter millimeter to the right.  Then it is “pull my shirt down”, which I thought I had, but low and behold, another tug down is needed.  And on and on it goes.

Bedtime can be even more challenging, especially for me when I’ve had a long day.  Each time Matthew needs to be turned I try to put his feet in the right position, make certain his ear isn’t folded under and place his arms left over right when he is on his right, then right over left when his is on the opposite side.  I just can’t get it right.  As I try to sneak away to catch another half hour of uninterrupted sleep I hear him say “straighten my legs” or “pull the covers up more”.  He’s not great for my disposition at 4:00 AM, but it’s my job. 

So, Patrick isn’t without his routine.  He is better able to move about in his chair, but the tags on shirts need to be just so and don’t cut them out unless you remove all threads.  He also needs the tongues on his shoes to be pulled up. 
I’m beginning to think moving tongues in the shoes is some conspiracy for them to wear me down.  Maybe they want me to buy some new video game, so they’re testing my resolve?  The truth is for those of us able to move freely, we do so with such ease and frequency that we never notice.  Imagine walking with a stone trapped in your shoe for a few hours.  For someone unable to remove this irritant that must be what being on folded material and not being able to shift your position while seated or lying down is like.  As much as I understand, these quirks sometimes work on me and I ask my sons if it really is their goal to make me bonkers.  I wonder if a girl at school helps Matthew remove his jacket, is every third word from him “ouch” followed by “pull down my shirt”.  When Patrick’s physical therapist helps him put his shoes back on how she can get them right every time and I can’t.  I still can’t figure it out.

Over time I’ve tried to anticipate my sons’ requests, but never with much success.  Being a person who is fairly organized and prefers a specific routine I look for ways to make things less complicated.  That strategy isn’t going to work when I help Matthew and Patrick, so it’s better for me to get used to it.  Still, I don’t need to sit quietly and have learned to poke a bit of fun at them when it starts to get a bit much. 

Instead of putting my left arm in and left arm out to do the Hokey Pokey, I’m repositioning Matthew three additional times or putting his glasses more on his right ear (for the fifth time).  I’m their dad and that is what I do.  Again, as the song says, “that’s what it’s all about”!

 

Brian Denger

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Comment by Filippo Buccella on April 2, 2011 at 12:48pm

Ok Brian, so I'm not the only one to do the Hokey Pokey!

:-)

Comment by Ofelia Marin on March 31, 2011 at 10:24am
Thanks Brian! My 3.5 yo doesn't have any problems with tags, socks, food so far. I did notice that it takes more convincing for him to try certain new things than his 21 month old sister...it took a couple of days to convince him to walk bare foot on the beach sand when we went to Mexico last week. :) However, he was fine after he tried it the first time. I'm sure things will accentuate with the disease progression.
Comment by Brian Denger on March 30, 2011 at 9:56pm

Hi Ofelia,

The boys have always had some things that bothered them from the time they were little, yet these seemed to expand as they got older.  For Matthew it was more sensory (He hated beach sand on his bare feet.) and Patrick disliked tag and labels on clothing and certain food textures (Relish is still unwelcome.).  Over time we got to this point and this is our life.

Brian

Comment by Ofelia Marin on March 29, 2011 at 3:36pm
Have you always noticed these in your sons or do they start when DMD progresses and they start loosing more abilities? My 3.5 year old doesn't display any of these tendencies at this point.
Comment by Brian Denger on March 23, 2011 at 6:26pm

Thank you Susan and Christopher for you comments.

Christopher, I am happy your impression of this blog was positive. I think twice before posting wondering how my words will be interpreted. There is no
reason for others to make you feel guilty about how you want to be
treated. Besides caring for my sons I've had the privilege of helping a
good friend who has muscular dystrophy in order for him to travel to
attend conferences. He too has particular needs that require a bit more
attention, but after taking care of those concerns we are both able to
get out and enjoy ourselves. I hope you are able to convince those
entrusted with your care to be a bit more considerate in how they act
and what they say.

 

Brian

Comment by Christopher Webb on March 23, 2011 at 2:18pm
This is a great blog entry. I should have the nurses at the hospital I live in read it. I have my own quirks that many people just don't really understand. I do realize that it's a lot of work caring for me and it can be extremely frustrating. It upsets me when people make me feel guilty about the quirks I have. They act like it's my goal in life to make them miserable.
Comment by Susan Robertson on March 22, 2011 at 9:10pm

This describes my two sons, they both have certain things they like adjusted a certain way too, my 24 year old seems to be the most difficult of the two to manage sometimes, but he is also particular about other things like his computer and TV, has a cow if you fingerprint something, since I spend the most time with my sons I do pretty good with it all, but my husband still struggles with their quirks, but when you've had a hard day and are tired, it does make it harder, since my husband works outside the home and I don't he helps certain nights getting both in bed, but I am the one who usually gets up to adjust them at 3:00 AM, I am going to have my husband read this so he knows he is not alone, thanks for sharing.

 

Susan Robertson

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