This topic contains 7 replies, has 3 voices, and was last updated by  Kevin Schaefer 3 days, 10 hours ago.

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  • #11203
     Kevin Schaefer 
    Keymaster

    Hello all. So, with it being winter and cold/flu season, it’s important for SMA individuals to take extra precautions regarding chest physical therapy. I’m actually just recovering from pneumonia, and I’ve increased my daily vest and cough assist sessions significantly.

    I’m curious to hear from you all what strategies you implement to protect yourselves from all the illnesses going around. Do you increase the number of vest and cough assist sessions you do per day? Do you adjust your BiPAP settings? Feel free to share tips and experiences, and to ask questions about this topic.

  • #11206
     DeAnn R 
    Keymaster

    I tend to hibernate.  It doesn’t always help as germs tend to find their way in.  I’ve only used BIPAP once during a hospital stay.  As I’ve never done a sleep study, not sure if it would be useful in determining if BIPAP would be needed on a nightly basis or not.  I do have a cough assist.  Use it mostly when I’m sick.  Who adjusts the settings for you?  I’ve never been happy with my settings.

    • #11209
       Kevin Schaefer 
      Keymaster

      Interesting. I’m surprised you’ve never done a sleep study, but I know that the BiPAP doesn’t work for everyone. My pulmonologist has always recommended I use it, and especially in recent years it’s helped tremendously. He handles all of my settings for the BiPAP and my cough assist.

      And yeah I also try to hibernate as much as I can during the winter, but even then I still got sick this season. It’s tough to avoid.

  • #11241
     Kelly Miller 
    Participant

    DeAnn, you can get your RT (respiratory therapist) to adjust them or your pulmonologist. Sometimes, you can change them yourself if you know what you want them to be. Are you a member of “SMA Support System” on Facebook? It’s a closed group but I think all you have to do is request to join and they will let you in. They have a “Files” section that has all sorts of info about settings for different machines, i.e. cough assists, ventilators, BiPAPs. Let me know if you need help finding it.

    I isolate myself somewhat during the winter to avoid getting sick. It’s hard though because I’m a very social person & don’t like staying home all the time. I also make sure I don’t let people hug me during flu season. I’ve had a feeding tube for 4 years now and I’ve definitely noticed a decrease in illnesses since getting it. I’m attributing it to greater nutrition, more calories, & less aspirating. I still eat regular food often, so the aspirating can’t be too big of a deal. When I do think I’m getting sick, I immediately pop a Cold Eaze into my mouth & use Zicam religiously when I get a cold!

  • #11242
     DeAnn R 
    Keymaster

    Thanks for the tips Kelly! I’ll definitely check out that FB page. Although my care team has my best interests at heart, they don’t exactly have experience with SMA so it’s nice to bounce ideas with others.

    I too have had a feeding tube for about 4 years. Can’t say it’s helped me with not catching colds but silent aspiration explained the inexplicable rattle I’d get on occasion.

    Does anyone get the pneumonia shot? Think I’m due for a booster. Is it every 5 years or 10?

  • #11243
     Kelly Miller 
    Participant

    DeAnn, I get the pneumonia shot. I’m sure it has saved my life many times. Although I’ve still gotten pneumonia, I’m sure it would’ve been much worse without the vaccine. It’s my understanding that you can get the booster anytime between 5 & 10 years after your last shot. It probably depends on what your doctor wants to do.

    I totally get what you say about your care team being good but not particularly familiar with SMA. I also do not have doctors that know anything other than the basics about SMA. I selected them based on their willingness to work with me as a partnership rather than having expertise and always trying to tell me what to do. We work together and come to the best decisions for my health. I’ve taught them  a lot about me individually and about SMA generally. It can be frustrating because I have to stay on top of the latest developments and treatments myself, but I feel like it’s better than not being able to have a say in what happens to me.

    That group on Facebook I gave you is a good one for the technical files but there’s another one that would be really good for you in general. It’s called Living with MD. It has over 1600 members from all over the world and we basically discuss EVERYTHING. It’s only for people who have a form of MD (not caregivers, not spouses, not parents) and only for those over 18. Topics of the post run from anything to do with hiring  Personal Care Attendants to dating with a disability, to what equipment works for some people (wheelchairs, beds, computers, feeding tubes, suprapubic catheters, etc.) to just plain social aspects. I’ve never been somebody who hung out with disabled people in my younger days but, since joining this group, I’ve found great information, as well as made some very good friends with MD. It is a closed group & I think you have to have an invitation to be considered. That’s how they make sure it stays for people with MD rather than just interested parties. If you want to give me your Facebook name, I can friend you & send you an invite. (If you don’t want to put your Facebook name on here, you can email me at jackell97@gmail.com) Or, you can find me on there under Kelly Simmons Miller. Friend me then I will send you the invite.

  • #11245
     DeAnn R 
    Keymaster

    Thanks again Kelly!  It’s great that there’s an abundance of resources available now.  Not like when I was a kid and we just winged it.  Kind of why I joined these forums.  The articles are always interesting and relatable, so I knew the forums would be as well.

    • #11247
       Kevin Schaefer 
      Keymaster

      Great discussion Kelly and DeAnn! Yes the online resources today really help people with disabilities connect. I also didn’t hang out with other SMA people as a kid, but as an adult I’ve found it to be quite helpful.

      Let’s keep these discussions going!

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