While every individual and family with Duchenne is indeed different and experiences different circumstances, common patterns do tend to emerge within social circles. From the child with Duchenne to the parents, siblings, and grandparents, certain patterns just leave their mark.
The childhood years with Duchenne are complicated. So complicated. These years typically include the diagnosis, progression towards non-ambulation, and attempts at keeping the child socially included. This time is filled with chaos, fear, hope, advocacy, and attempts to keep everything “normal.”
The article above offers an overview of many of those patterns, helping to illuminate the complexity of family life with a child with Duchenne.
Adolescence is a hard time for just about anyone: the budding independence, the physical, emotional, and cognitive changes, the looming future. Now, let’s add Duchenne Muscular Dystrophy to the mix.
There are going to be extreme levels of loss and stress with any kind of life altering illness but with Duchenne, the losses and stressors tend to skyrocket during adolescence. There’s typically the mobility change and acquisition of a wheelchair. The dynamics of families and peer relationships change, daily routines and structures change, the frequency of medical appointments often changes… the list really can go on and on and on.
While adults with Duchenne experience life projects & decisions common to almost all adults, their version of the life projects is often far more complicated. From hiring and training attendants to managing fatigue with schooling or work, financial challenges, and affordable health care, making these important life decisions can seem overwhelming and insurmountable.
It’s important to research and discuss these projects well before decisions need to be made.
