We all feel like we are being held up to some predetermined standard – whether it is at our job, in school, or just walking down the street. In Duchenne, we compare our sons to other people’s sons, to others with Duchenne. But who is to say what is right or normal? In their monthly co-blog, PPMD President Pat Furlong and Colorado FACES coordinator, Ivy Scherbarth acknowledge that measuring and comparing has its place, but what is really important is being your unique self. Read this month’s co-blog and share your insights about measuring up.
From the moment we are born, we are weighed and measured, our statistics charted on a growth curve. This seems to start a cycle for the rest of our lives, our parents and grandparents marking the date and time we first smile, roll over, take that first independent step. In my family we charted height, often at random moments, on the wall in the bathroom, the crayon marks still visible. The process continues as we become adults, we measure ourselves. Our friends measure us. The world measures us and captures our statistics. Average. Above. Below.
And it seems everyone in our lives has their own ideas about what may be important to measure, when and how to measure it and where it aligns in the scheme of our daily lives. As parents, we have our own rulers, our own measures, the things we want to know and sometimes, the things we observe and pray could and should be different.
In school, we measure any number of tests to assess cognition, language, basic skills, and educational performance, which continues and expands into high school and beyond.
We are in a world of measures, everyone carrying around their own ruler, with a specific list of statistics of interest.
All of these methods, all of these statistics fit on someone’s chart somewhere and I’m convinced, as parents, some of our graphs and charts are buried inside of our heart.
But while charts and graphs are useful in general terms; comparisons and statistics tell us part of the story and provide a bits of insight. But when all is said and done, when we are nestled safely in our homes, we realize that every last one of us is different, unique, distinctive, and irreplaceable.
Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.
Life as an Extra-Clinical Trial
I'm quite fond of my local muscle clinic. It isn't perfect and it isn't famous but it is staffed by intelligent, caring professionals who try their very best. They are always looking for ways to tweak the system and make improvements in the quality of care they provide. One of the thoughtful innovations that they have instituted recently is to group scheduled patient appointments by diagnosis and age. This has its benefits and its drawbacks, of course. We have very much appreciated meeting some of the men and older boys in our community, and the impact of these meetings, however brief, cannot be overestimated. We often talk about the firefighter (with Duchenne-- he's the dispatcher) who lives independently with his brother (with Duchenne), and how we wish for a life like that for our son. Yet, I think that for most folks most of the time, grouping by age set is a good idea. We do tend to be facing the same issues at about the same time, and every opportunity for casual parent-to-parent support is a good thing.
My son just turned five. It was certainly a new and interesting experience for us to be one of the "elder" families in the room. Many of the folks in our age set are just coming in for their first or second appointment after diagnosis. We have so many questions for our doctors, ourselves, and each other at this stage. It is wonderful for us to be able to see other people going through what we are going through.
Yet I think it is imperative that we remember that diagnosis is not destiny. We don't know what is going to happen to our children. We can look at the data, we can ask the experts, we can analyze facts. But in the end, the best we can do is to look at each child as a unique and important individual in particular circumstances, and try to do our best for him. The aggregate data showing facts about the "average kid with Duchenne" cannot describe the course of any particular child's life or death. Each family must make its medical decisions based on the particular expression of Duchenne in their specific child at any given moment in time. We are all changing and adapting to the demands of Duchenne as it manifests subtly differently in each person. The three year old who toe walks is not necessarily "progressing faster" than the five year old who doesn't. The seven year old who was just diagnosed does not necessarily have a "milder case" than the two year old whose diagnosis was delivered on the same day. We have to remember to compare our son only to himself when trying to estimate the course of his progression on his own Duchenne path.
At our age, the big topic for discussion is steroids. At our last clinic visit some of the families walked away with prescriptions and some didn't. Some chose prednisone, some chose deflazacourt. Some chose to wait for a peak of abilities before starting steroids. Some of us chose to wait for other reasons. We agree that the side effects of steroids are awful. We agree that regular, long term steroid use has become the standard of care in the ongoing quest for the effective treatment of Duchenne.
This feels like a truly momentous decision, whether and when to take steroids. We know that the studies suggest that in order to get the best effect from steroids, our son must stay on them for the rest of his life. But folks, please, remember, we are not arranging our sons' marriages here. This is not 'til death do us part. This is not ordained by god, tradition, and society. This is a medicine that we can choose to take or not, that we can regulate for ourselves with the help of our teams of doctors, nurses, and professionals. For a small minority of patients, steroids have no effect at all. For some, the side effects of steroids are unbearable. The decision of each family to take steroids (or not) is the beginning of our participation in a long term scientific experiment, call it an "extra-clinical" trial if you like, testing whether or not steroids are a good idea for the Duchenne & Becker population as a whole.
To take steroids or not to take them is not a one time decision. We can give this to our sons for a time, and then, upon reflection, we can decide if we want to continue. This is something that we can try. We must continue to evaluate, to question, to observe, and to report the ongoing results of our experimentation with these drugs. After all, our children, the generation that is alive and on steroids today, is the first generation to adopt these drugs en masse.
Our whole lives have become the science-- an experiment-- of how to cope with Duchenne. Life with Duchenne is a trial, clinical or not. It is filled with momentous, tiny, huge, daily decisions which force us to do the best we can with what we've got, no guarantees. Let's try to remember that we do what we do in support of our sons, each of whom is unique and precious, different from anyone else who has ever or will ever live on earth.
Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog, My Son, My Rain: A personal, biased account of one family living with Duchenne Muscular Dystrophy.
Pat Furlong, Founding President, CEO
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