Aspiration, Pneumonia, and Multiple Sclerosis
In my long-time battle with multiple sclerosis, I’ve had my share of scary moments, times when MS has impacted me enough to make me have a concern for my life. Most of these terrifying episodes have involved falling, like when I fell through a plate glass window, fell while trying to take steps, and fell into traffic. My close calls haven’t come only from falls though. Another issue has been recurring since I’ve been diagnosed with MS: pneumonia.
Pneumonia and MS
Over the years I have had numerous bouts of pneumonia, several that have led to me being hospitalized. While your first thought might be, oh, that makes sense, he’s got a wonky immune system and most of us tend to get sick a little more (and more intensely) than the average person. While that may contribute, my real problem is actually aspiration. Pneumonia because of aspiration is a serious issue for me and for many others with MS.
What is aspiration pneumonia?
Pneumonia is an infection of the lungs caused by a virus, bacteria, or even fungi. This infection leads to air sacs in the lungs filling with pus or liquid and makes it difficult to breathe, as well as often bringing a fever, a cough, chills, and tiredness.1
Aspiration is when food or liquid gets into the lungs. When it comes to multiple sclerosis, aspiration can occur for a couple of different reasons. One, our body can no longer properly clear secretions, like mucus and saliva, and some of that ends up in our lungs (that’s one of those lower-level issues that people don’t think about being a problem with MS, where the communication between our brain and a basic ability we take for granted is compromised).2 The other big cause of aspiration in MS is when someone experiences difficulty swallowing, known as dysphagia, such that when they eat or drink, some of it ends up in their lungs.3
Aspiration pneumonia occurs when someone with these issues gets something (like our secretions, food, or liquid) into their lungs and it brings germs that can cause pneumonia with it.
I really didn’t think I experienced swallowing issues. I’d sometimes “choke on my water”, but who hasn’t done that on occasion? Getting several bouts of pneumonia maybe could have been a clue, but no one had really said much to me about that. By the time I had pneumonia, the concern was never how I got it, but how to get me through it, and afterward, it was rarely revisited. I was, however, extremely fortunate to date a speech pathologist for a long time and she was the one who first figured out that I had a swallowing issue (speech therapists deal with much more than just talking).
Despite occasionally choking on liquids, my real swallowing issues were much more subtle. I thought she was crazy when she first suggested it, but sure enough, she had got me to have a procedure that included me swallowing a liquid with barium in it while having x-rays and video taken. Sure enough, she was correct and it was proven that I had swallowing issues that, while not always the case, sometimes lead to liquid getting into my lungs. She got me to make some changes in how I eat and drink, basically to slow it down a bit. At the time, I pretty much lived with a Nalgene bottle, with its large opening, in my hand, constantly drinking water. She got me an insert for the bottle that basically limited the amount of liquid that came out with each sip and that helped me a lot. Some lifestyle changes like that helped, however, it didn’t make my issues disappear.
Pneumonia is scary
Despite her figuring out my swallowing issues and helping me with them, I still occasionally get pneumonia. When I get it, it almost always ends up being pretty severe. Pneumonia is terrifying. Having difficulty breathing is about as scary as it gets. I normally get a pretty severe fever to go along with coughing and trouble breathing. My grandfather also had MS, and he also often suffered from pneumonia, eventually, that’s what took him. While (knock on wood) my disease activity has been stable for a good stretch, I still live with the damage done from all the exacerbations I’ve had over the years. If I never suffer any more progression, I will still be cursed with the issues I already deal with, one of which are these swallowing issues.
The seriousness of aspiration
No matter how many precautions I take, I have no doubt that if everything stays the same, it will be aspirational pneumonia that takes my life. That’s not doom and gloom, that’s just being realistic. I say this not only because it’s true, but to drive home how serious aspiration can be. I know that the changes I’ve made, while they haven’t eliminated the issue, have definitely decreased how often I experience these issues, which has probably increased my lifespan. If you think you have problems swallowing, talk to your doctor and see if you should talk to a speech pathologist.
Do you ever swear you smell smoke or cigarettes but there's nothing there?