I’m not much of a winter person which must cause people to wonder why I still live in Maine. Some days I don’t really know why I stay, especially in the dead of winter when the nights are so long and cold, but this is where I was raised and I like the independent nature of the people and the rugged coast. It isn’t an easy place to live due to the harsh winters, but for someone looking for a sparsely populated state with plenty of all year outdoor activities who can tolerate the cold this might be a place to consider.
While the low population rates are in many ways appealing, for a person with special medical needs it often means regular travel to find appropriate care. This certainly has been my family’s experience for the management of Matthew and Patrick’s Duchenne muscular dystrophy care. Aggressive care management and familiarity with DMD is not what we found with many local physicians, so in addition to finding specialists willing to learn more about DMD, we found it necessary to travel to augment their care. Almost since the time of the boys’ diagnosis we have gone to clinics with the reputation and experience we thought would be best. Besides working with doctors willing to support our local physicians, we prefer those who speak about treatment options with Matthew and Patrick as much, if not more than with Alice and me. The fact is we do this for our sons and we want them to be making their own decisions as much as they are comfortable doing.
Patrick participated in a clinical study last year and Matthew is now taking part in a drug study. Prior to their participation I made certain they read the study consent. These documents spell out the goals of the study, length of participation and expected and possible side effects. They may not paint an entirely rosy picture, but it is important that anyone agreeing to participate is aware of what is planned and that there may be unintended negative side effects. I know my sons understand much about DMD and wish this wasn’t necessary, but they live with DMD every day and Alice and I believe their participation is as helpful to them as it is to the greater DMD community. Once Matthew and Patrick finished reading the consents I helped them with clarification as needed. I also realize the unknown is scarier to my sons than reality, so I took the time to ensure they understood everything in order for them to decide whether they wanted to participate.
A recent cardiac MRI has shown the extent in which DMD has affected Matthew’s heart. When I spoke to his doctor about the results and possible treatment options we also discussed how to talk to Matthew about this. As things often happen, he had an appointment locally which motivated Alice and me to speak sooner with Matthew about the test results. After Alice told him we planned to talk to him, his first question was whether it was about something he should be worried about. Alice said it was important, but there was no need to be worried. That evening we spoke frankly about the tests and possible future interventions. Matthew was relieved no treatment was immediately needed and asked about time frames for having anything done. We explained this would be based on how things progress and is typical with DMD, time would tell. I took the opportunity to ask him how he wanted to continue handling the management of his care explaining the options. He said he preferred for us to all be involved. I assured him that all final decisions would be his to make which seemed to satisfy him.
Parents who have children with DMD realize how different their lives are from other families. Still, when families think of giving their sons more freedom, it is often allowing a first date or using the car for an errand. We never imagine this being about our sons making the choice about taking over their medical care or participating in a clinical trial. I can’t think of any parent who looks forward to speaking with their child about such serious matters. The thought of Matthew needing to think about the possibilities for cardiac support at his young age or for him and Patrick to be involved with so many doctors is not ideal. Talking to a son or daughter about the “facts of life” seems a breeze.
I suppose my living in Maine all these years has inspired me to instill the same independence in my sons that I admire in the people from this region. Alice and I have chosen to be open and honest with our sons. Certainly when Matthew and Patrick were much younger we opted to be more careful with the words used, but now our sons expect us to treat them as adults and in that I take much pride.