Tips for Staying Well

Dear Andrea,
I noticed you said in the Breathe with MD Support Group you have never been hospitalized for a respiratory infection. I’ve been in and out too many times to count. Do you have tips you wouldn’t mind sharing for staying well?
Sincerely, 
Trying to Stay Well

Dear Trying,
I’ve kept several things in my "wellness toolkit" over the last few years that I suspect may be why I’ve avoided hospitalization for respiratory infections.  I have had a few respiratory infections, but each has been manageable at home. 

Always check with your Neuromuscular Disease (NMD) care team for their suggestions on staying well.  Many of us have worked with our medical teams to put into place a protocol to attack illnesses as soon as they start.  If ever in doubt about whether you're developing a respiratory infection, seek medical care promptly.  It's better to be told you have no infection or caught it early than to delay necessary care that could land you in urgent care or the hospital.

My seven tips are as follows:
1.  Vaccinate! Get an Influenza vaccination in October and stay current on the pneumonia shot your physician orders.  Influenza, also known as “seasonal flu.” is a respiratory virus that can have life-threatening effects on those who have NMD.  Often it’s not the flu itself that’s deadly but complications like secondary bacterial infections that develop (i.e. pneumonia and/or sepsis). 

A flu shot isn’t perfect; some who are vaccinated will still get the virus.  However, studies have shown that those who were vaccinated had illness that was shorter in duration and less severe, meaning less likelihood for complications to arise.  If you poll your adult friends in the NMD community in the US, the majority of us answer with a resounding “YES” that we get a flu shot each and every year.  If you haven't gotten yours yet, it isn't too late to do so; but it takes approximately two weeks to build immunity against the Influenza strains included.  

There are different pneumonia vaccinations, so it’s important to check with your NMD care team to learn whether or not the one you’ve received in the past requires a “booster." And if you've never had a pneumonia shot, most NMD care teams will recommend a pneumonia vaccine, as research supports it can protect you from some types of pneumonia.

2. Avoid / “Hibernate” - When I know that illnesses such as Influenza or stomach viruses are circulating in my workplace and/or the community as a whole, I go into "avoidance mode."  I will not go near anyone I know has been ill or has had a family member that was recently ill.  I will also avoid touching surfaces in common areas with my fingertips or a grip of my hand like the work restroom door, break room drawer pulls, etc.  If I must touch a surface like an automatic door opener, I will use my elbow or knuckles, not my fingertips.  For other surfaces, I hold a paper towel or tissue as a barrier between my skin and the surface.  If I have no choice but to touch a “community surface,” I wash my hands afterwards or use alcohol hand sanitizer.  If these things make me a "germaphobe," that's fine with me.    

I also will not go to stores or any place other than my place of work during times of peak illness in the community.  Staying home while people are out likely spreading illness is another form of  defense I like to call "hibernation."  I realize this is unrealistic for many of us, however. 

3. Stay warm and dry when outside - One of my respiratory infections in the past began not long after I had been forced to stand outside after a fire alarm sounded at my place of work. It was raining lightly, and I got wet and chilled.  Within a couple of days, I was sick with an upper respiratory infection that went deeper into my chest.  I watch weather forecasts closely and ensure that I’m prepared to stay warm and dry year round, even if caught in an unexpected situation like a fire drill.

4. Get extra sleep, including naps - During times of the year when respiratory illnesses are circulating, I try to get as much sleep as possible, even if that means taking a short afternoon or early evening nap. I always use my assisted ventilation during naps. When I experience that drained, “coming down with something” feeling, getting extra sleep will kick those feelings aside and boost my immunity enough to fight the infection off or make it clear up faster.  

5. Gargle at the first sign of sore throat - I know not everyone can gargle liquids in their throat or tilt their head back in the process of doing so.  I believe that Listerine brand mouthwash (Cool Mint and similar) has an amazing ability to kill germs that live in the back of the throat. It also works well to break down and remove mucus in the back of the throat.  

When I feel symptoms of a sore, scratchy throat from sinus drainage or some unknown cause, gargling Listerine three or more times that day will clear up the pain and prevent escalation to a throat or tonsil infection. If an infection like that overcomes my body, I find that frequent gargling of warm salt water specifically with coarse grains of salt alternated with gargling Listerine multiple times a day resolves the illness faster.  

6. Use a Nebulizer - I have a small Pari Vios nebulizer compressor and a prescription for Levalbuterol solution but have found that unless I’m already sick with a condition that involves wheezing, "nebulizing" plain saline is sufficient. For me, saline alone begins to break up mucus before I use CoughAssist. Many of my peers prefer one nebulizer medication over another, so ask others what they use and why. Your NMD care team should also have recommendations. 

Note:  If you’re using a metered dose inhaler as a substitute for a nebulizer, you’re likely getting little to no benefit of the inhaled medication, even if you are using a spacer to take multiple "puffs." When you have weakened breathing muscles, a nebulizer helps to consistently aerosolize extremely fine particles of the liquid that can be forced into the airways deeper and more efficiently.  

7. Use CoughAssist consistently and multiple times a day, especially when mucus changes in type or color - I use my Respironics CoughAssist T70 no less than twice a day when well but often use it three or four times daily. When I notice my mucus changes color or thickness (eww!  TMI!), I increase daily usage of CoughAssist to ensure I get this up and out of my airways as quickly as possible.  The longer it stays in my airways, the greater the risk of developing a bacterial infection.  

That concludes my list of tips.  I realize everyone is different, and what works for me might not for you.  You also might not have access or the ability to do some of what I do.  Either way, perhaps even one of these tips offers you an option you might not have considered as a means to staying well.  

Best wishes for a healthy year,
Andrea

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