about the author:
Jacob Gapko is 45 years old with Duchenne. He uses a power wheelchair and non-invasive ventilation 24/7. He has a BS, an MLIS, and is a specialist. Jacob has an incredible passion for helping our DMD community. He can be reached at Jacob.Gapko@FamilyFriendsAndDuchenne.org
Respiratory Health, Social Activity and DMD
Colds and other respiratory infections can easily turn into pneumonia for an individual with Duchenne. The general risk comes from being immunocompromised. In our individuals with Duchenne, this often occurs for two reasons.
The first is that long term corticosteroid use – which is now common practice in the treatment of the disease – causes individuals to become immunocompromised. Even if your loved one with Duchenne doesn’t use corticosteroids, simply getting older can be a risk factor. As Parent Project Muscular Dystrophy (PPMD) explains in the respiratory section of their website, “as people living with Duchenne grow older, coughing muscles become progressively weaker. Weak coughing muscles can put people with Duchenne at risk for mucus plugging, atelectasis (section of the lung collapsing), and pneumonia.”
Often individuals with Duchenne and their families have to be choosy about social activities to avoid exposure to colds and other respiratory infections. They may avoid family gatherings or crowds where there are likely to be sick people. When hosting a get together, they may ask their guests if they are sick, have symptoms, or have been exposed to others who are sick. They may even ask guests who are sick to stay home instead of attending.
This may feel strict or feel to others as an interrogation, but this is part of being vigilant. If you can avoid being exposed to viruses in the first place, you have a significantly lower risk of catching something that could develop into pneumonia.
You might wonder how this plays out in the real world and I have some examples.
In 2022, my girlfriend was unable to visit me on multiple occasions. One week she had been exposed to someone with COVID, another week because of an influenza scare at work, and another week she could not visit because her head cold had turned into walking pneumonia. The decision not to meet was a mutual decision to make sure she did not get me sick. Sometimes with Duchenne you cannot be with the people that you love.
I live in Eau Claire, Wisconsin. I was supposed to have a visit with Jill, my best friend from college, who had flown from Mississippi to Minnesota. Jill would have had to drive an hour and a half to visit. Unfortunately, the night before our planned visit, her daughter, Elyse, spiked a fever and we had to cancel our meeting. Instead, we had a video call. Elyse was very concerned that because of her own illness, her mother – my friend – could not visit me. My friend had to explain to her daughter not to feel guilty and why I can’t risk getting exposed to potential respiratory infections. Sometimes you have to be with the people that you love virtually when you would much prefer to be in person.
In October, my best friend Jeff was visiting the area from Ohio. Normally this would involve a visit with his wife and two children, but they were not vaccinated for COVID. Instead, I was only able to see my friend by himself and we both wore N95 masks. I was able to see his wife and kids at the end of the visit through our porch door as they stood outside. With loved ones it’s always better to be safe than sorry.
At the end of the day, it is important to educate those within your social circle. They need to know that you and your family must be extra careful to avoid exposing your loved one with Duchenne to respiratory illnesses. Sometimes that means making the difficult choice not to meet or to do so virtually instead. Ultimately, these are the choices that show that others love us and are concerned for our well-being.