When I think of families caring for a child with a chronic condition I sometimes think of nineteenth century American writer and poet Henry David Thoreau. He wrote "The mass of men lead lives of quiet desperation." I don't entirely agree with Thoreau, yet realize there are moments in our lives where we struggle for control and insight.
It is a daunting task to live and breathe Duchenne each and every day and those of us connected to this disorder cannot escape it's grasp. Unlike receiving the diagnosis for an acute condition, learning your son has DMD and the changes that will happen to your family's life comes over a longer period of time. My daughter was five when she became very ill and we learned she had Type I Diabetes. We spent four grueling days in the pediatric wing of a local hospital learning how to test her blood glucose level and give her injections. It was immediate and we were terrified being sent home hoping we knew enough to keep her healthy and avoid serious and life threatening complications. There were few choices, we had to care for her and we had to do things right with support from a nurse or doctor over the phone. When we learned about our sons' having DMD we knew it was a terrible disorder, yet had time to learn how to care for them before they lost abilities. At the time of each diagnosis I couldn't tell which was more difficult. We weren't given much information on how to care for our son and there was no local DMD support system. This was really learning by doing.
Upon diagnosis many of us begin searching for information. Health related websites were very basic eleven years ago when Matthew and Patrick were diagnosed. Even the medical text I found at a local school of medicine were outdated and provided horribly inaccurate information. The challenges in determining whether or not a website offers credible information hasn't changed over the past several years. Today it is easy to find suggestions on the internet about any disorder and a laundry list of ways to help those affected. I always try to determine their sources and what is their goal. It is still impossible to know what is appropriate for each of our sons. We truly are an "experiment of one" and that makes the job of knowing what is best for our sons more difficult. Over time we meet others and discover valuable resources learning things that we slowly incorporate into our family's regime. The silver lining is that today there are actually some basic standards for care or best practices for DMD and improvements have been made in the life expectancy and quality of life for those living with this disorder.
As soon as I learned of my sons' diagnoses I spoke with families who had sons older than my two boys to prepare for their future and get a different perspective. I also spoke with young men who have DMD to try to understand what they think of the level of care they receive. It is really interesting to listen to what these young men think about the care they are receiving and how they might have done things differently. Time has quickly crept up on me and I realize I am closer to the point where my boys are part of the "older generation" than I want to believe. Having the benefit of speaking with many informed people helped me to realize my sons' opinions are priceless.
What have I learned over the past many years? The saying "Life is what happens when you're making other plans" is especially relevant. My wife and I made most of the decisions for our sons' care including surgeries, supplements and medications. Like many parents we struggled to keep our sons walking and chose steroids and other supplements hoping the benefits were worth the risks. We decided early that being pragmatic was better than being reactionary. If there was evidence, whether anecdotal or substantiated, we investigated alternatives. We were suspicious of anyone who claimed "dramatic improvements" or "almost a cure" for products or procedures. I believe we made good choices. As my sons are sixteen and almost fourteen we now include them in discussions concerning their health care options.
Possibly the biggest lesson I learned from other families and from our experiences is that caring for someone who has DMD is very time consuming. We regularly visit three different clinics for our sons' care. My wife and I try to stretch them regularly, feed them a small pile of pills, bathe, dress and toilet them and turn Matthew several times each night. I know we can't do it all and weigh each decision on what results we expect and how that impacts their quality of life.
At some point we all must think about what we are doing and why we are doing it. I remember giving the boys supplements, pills and powders mixed in grape juice and watched as they dutifully took them despite gagging from the foul taste. I would then watch their every move and behavior to analyze the effectiveness of the substances we were administering. The questions I had exceeded any answers: Is it the supplement or a growth spurt? How will this new compound react with the medications they are taking? Will it diminish the effectiveness of the Prednisone? Is there really any benefit? Is this how we want to spend our days with our sons and is it really worth the money?
Matthew stopped walking at age eight and Patrick barely stands with maximum assistance as he approaches his fourteenth birthday. We gave them identical doses of Prednisone and supplements and they've had similar PT and OT. Before Matthew had spinal fusion surgery I took them both swimming weekly. Despite all this work I cannot honestly say anything had any beneficial effect except Prednisone which has been tested many different times.
I still read as much as possible about potential therapies and the hope that one supplement or the "off label" use of a particular drug may help slow the progression of DMD. I have a cautious respect for families who after careful research consider using some of these compounds, but fear some efforts or combination will be detrimental to the health of their son. Most of all I hope families don't spend their entire life searching for this "holy grail" while forgetting to spend time with their son or bankrupting their family. Time is just too valuable to waste and our boys need as much love and attention as we can muster. We all have a certain intolerance for the slowness of research for DMD. I've wrestled with thoughts of what would I do if my sons might be candidates for a potentially helpful, yet possibly harmful drug. It just isn't easy and I wonder if we'll ever learn whether the decisions we made were right. Would we want to know?
Until a universal standard of care is developed for DMD and becomes common practice which includes flushing out the viability of alternatives and supplements, families are at the mercy of chance and many unknowns. As parents we will still need to make rational decisions based on our understanding of current "best" and potential "better" practices. The key is to remember we still need to function as a family while remaining sensible about what we are doing for our sons.