For many people, seasonal allergies are a big annoyance – bringing sniffles, sore throats, and coughs every spring and fall. However, for people with ALS and their caregivers, allergy season can be far more serious. Reactions to allergens like tree pollen can irritate the respiratory system, lead to increased mucus production, and make breathing even more difficult.
Jamie Smith is a pediatric respiratory therapist with deep knowledge about how allergies can affect our breathing. She also knows ALS all too well. Her husband, Scott, was diagnosed with ALS in 2020 and passed away from the disease in 2022. Scott was a personal trainer who raised great amounts of funds and awareness for ALS research through his Flex on ALS challenge. Throughout Scott’s ALS journey, Jamie drew upon her background in respiratory medicine as a caregiver and advocate for her husband.
Recently, Jamie joined the ALS Therapy Development Institute (ALS TDI) to talk about how allergies can affect people with ALS, and what they and their caregivers can do to lessen the impact and safely navigate allergy season.
Note: During the Month of May 2024, Jamie Smith is challenging people to get moving and raise money to support ALS research at ALS TDI through the Flex on ALS: May Movement Challenge. To learn more and help support her efforts, click here.
Q) ALS TDI: To start off, can you give a brief explanation of how ALS affects the respiratory system?
A) Jamie Smith: So, it’s twofold. One thing that happens is they lose the ability to swallow. A lot of people with ALS get feeding tubes because of this. But the other side of that is that people with feeding tubes can’t swallow their own secretions, so they're essentially drowning in mucus. That's one part of it.
In addition, ALS can cause the diaphragm and intercostal muscles to weaken. This means you’re unable to take a large breath, and you're unable to cough – again making you drown in your secretions.
Taking medications to help dry out the secretions can help. Suctioning can help. There are also cough assist devices, which simulate a cough. These devices push air in and then pull air out of the lungs to maintain pulmonary hygiene – this is important to make sure that people with ALS don't get pneumonia. A lot of people with ALS wind up passing away from pneumonia because of all the secretions and fluid buildup up in the lungs. So, you’ve got to find a way to get the fluid and secretions out.
Q) And how do these symptoms tend to progress over time?
A) In terms of breathing, you might notice during the day that someone with ALS is more tired. They have headaches. They’re not thinking very clearly. And a lot of that is because of a buildup of CO2 in the lungs, especially at night when you're lying flat and not taking big, deep breaths.
Usually, the first step when you start noticing those kinds of things is to start initiating the noninvasive ventilation at night. Then, hopefully, they'll start feeling better during the day. But at a certain point those symptoms that I talked about at nighttime start to go into the daytime. And that's when people with ALS have to start wearing that noninvasive mask to help their lungs breathe around the clock.
In terms of the secretions, you'll just notice constant clearing of the throat, coughing, but it never clears. They’re essentially choking on mucus. That's how you know that they're having trouble swallowing, clearing it up, or coughing it out.
Q) What are the external factors, like seasonal allergies or infections, that can make these symptoms worse.
A) Seasonal allergies are when you’re sensitive to a specific allergen, let’s say like tree pollen. That's going to produce even more mucus. You're already struggling with clearing the mucus out, and then you're being flooded with more.
One thing that you can do to tackle that is to take over-the-counter antihistamines. They usually say that, with those kinds of medicines, you want to take them before the allergy season begins. So, you need to ask, “when do I struggle with allergies?” Spring? Fall? Summer?”
Let's say it's just the springtime. Then, you want to start the antihistamine before springtime hits, so it's already in your system and prevents that buildup of the mucus. There are several different ones out there that doctors can recommend – like Zyrtec, Claritin, or Flonase.
You can also find pollen counts online regularly, especially if you know what specific pollen you're sensitive to. Pay attention to those counts. Our tendency is to open the windows and let fresh air in our homes. But then you're letting all those allergens into the home. So, you want to keep windows closed.
If they’re allergic to a specific pet, obviously you want to keep that pet out of the general area that the person is in. It's not just keeping the pet off them, it's keeping them out of the area, because it's the pollen and/or the hair and dander that can get on furniture and anything that you touch.
If you've been outside during a high pollen season, you should change clothes when you come inside. You can take a bath or shower before bedtime, so you're not lying in your sheets with the pollen in your hair. In terms of allergies, that's what’s recommended.
Colds and viruses are tough. That makes things a lot harder for people with ALS. You can do your best to control that environment. It was hard for us. We had two little kids that had all sorts of germs. But we did our best with washing hands. Scott had a caretaker that had Covid and Scott wound up in the hospital because of that. And after that we said, “okay, you need to wear a mask around him all the time. And if you are feeling sick, you absolutely cannot be around him.”
Q) Are there any tools or adaptive tech that people can use to help reduce the effects of seasonal allergies?
A) One thing you can use is air purifiers. They're expensive, though. That's the hard thing about recommending those. There's no air purifier that can do the whole house, but having an air purifier in the room that they're in can help filter out some of those allergens and dust.
There is a filter inside of your BiPAP, or noninvasive ventilation machine. You want to make sure you're changing that out regularly, because it's pulling outside air through the BiPAP. If there are allergens in the air, it should be catching it. However, if it's full, then it's not catching everything, and the allergens are going in through the BiPAP.
There are other airway clearance devices. I already mentioned the cough assist. There's something called a vest that shakes up the lungs and helps clear out the mucus, breaking up the mucus inside the lungs as well. And then a suction machine.
Q) Can cleaning practices around the house also help reduce allergens?
A) You should be regularly changing the air filter in your furnace. You don't need the most expensive, highest-rating filter. In fact, some of those are harder on your HVAC system. They have to work harder to get air through, when the ones on the lesser end filter out just as much and won't make your utility skyrocket. You don't want the cheapest one, but you don't want the most expensive one either. You want to change it at least every six months, but if someone has allergies, you want to do it more like every season. So, four times a year is what I would do if someone's struggling with allergies.
If you have carpet, you should be vacuuming every day during high allergy seasons. Make sure that the vacuum has something called a HEPA filter – that will filter out all the allergens. If you have the means to rip out the carpet and have hardwood floors, that is the most allergen friendly.
Washing sheets and bedsheets with hot water once a week will help decrease dust mites and allergens. I personally would get rid of curtains, unless you're going to wash them regularly because those attract dust mites and allergens as well.
Q) Do you have any other specific advice for caregivers during allergy season?
A) All of those things that I mentioned for allergies, I know any caregiver would see that and say, “I don't have time for that. That's a lot to put on my plate.”
So, you just have to triage. Number one would be to keep sick people away. If you're sick, and you don't have anyone to help you, wear a mask and wash your hands a lot so your person living with ALS does not get sick.
Focus on the easiest things you can control when it comes to allergies. If you have concerns about allergies, definitely ask a doctor about allergy medications and what they recommend to help control it. If you're able to clean and vacuum and change out those filters regularly, do it. If not, see if there's someone in your circle who can help you with those things. Just give them a list – “this is what I need done every day or every week.”
When it comes to the equipment I mentioned – like the cough assist, the noninvasive ventilation, the vest, and the suction machine – try to be proactive about that. Get ahead of it, because it can take time to get that equipment approved through insurance and then to learn how to use it. If you can get it before you need it, that's definitely beneficial. Talk to your ALS clinic, or whoever your primary care provider is, about how you can get that equipment sooner.
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