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    Adapting to Life Outside Our Home With SMA

    I once heard a joke that a woman’s mind is like an Internet browser that has 1000 tabs open and running at once. I laughed at the time, but came to realize that if I didn’t actually feel like this before hearing the short acronym “SMA,” I most certainly do now.

    I spend much of my time pre-planning and thinking of possible problems that we may run into because of the kids’ diagnoses. I think many other SMA parents do this as well. Prior to our lives with SMA, we didn’t realize just how inaccessible the world is to those who are differently-abled.

  • This topic contains 14 replies, has 7 voices, and was last updated by  Alyssa Silva 2 hours, 51 minutes ago.

    • Author
      Posts
    • #21059
       Crystal 
      Participant

      Every case I’ve read of SMA patients dying, they died by choking on their own spit. I had been thinking about that a lot lately and it’s been really pulling me down. Then last Sunday, I went to bed as usual and fell asleep good. But then I woke up at around 11 pm and I could not swallow or scream or anything. So I just layed there all night singing old Taylor Swift songs in my head to keep myself awake until my mom came in the next morning to get me up cuz I was scared if I fell asleep, I’d choke. Since then I’ve been having a hard time swallowing and my throat is really hurting. My doctor gave us some medicine but we don’t know what the actual issue is. And I’m kinda scared. Like I don’t wanna die. I’m not ready. We have calmed it down it seems but I’m still having trouble swallowing. And I don’t want to die by choking, period.

      I’m sorry if I pull y’all down too. I just needed to get this off my chest.

    • #21060
       Kelly Miller 
      Participant

      Crystal, I know that must’ve been terrifying in the middle of the night, all by yourself. I can only imagine how I would have felt my own heart racing in that same situation. Don’t hesitate to say (or write) whatever you need to here just because you think it’s going to be depressing for us. I feel like that’s what these forums are for, giving us a platform to voice our opinions & fears & victories.

      So, what did your mom say when you told her you were awake all night to keep yourself alive? I’m wondering how you can have something in place to be able to call her or someone else in the house if you need them. What about using Alexa thru an Echo or Echo Dot? I use that to get my husband when he’s in his home office & I’m in the living room.

      Do you use a suction machine at all? That might help a little when someone comes in to help you. You don’t have to put it way down your throat, if that scares you also. You can just suction out your mouth & any mucus you can pull up. I understand about having troubles swallowing. Even tho I have a feeding tube, I eat a bit of food each day and have to be careful about swallowing. Sometimes I have a lot of extra saliva & mucus going on, and I have no idea where it all comes from. I think when I’m overly tired, it’s hard to for me to swallow. Could you have been overly tired for some reason?

    • #21061
       Halsey Blocher 
      Participant

      Oh gracious Crystal! I’m sorry this is causing you so much anxiety! Kelly is right. You don’t need to worry about sharing anything that on your mind here. Part of why we are here is to support each other. She has some good ideas too. If you don’t have a suction machine I would definitely recommend looking into one. I’ve used one for years, even before I had a trach. It’s a great tool for when you’re having trouble swallowing, your throat hurts, you’re tired, etc. I think having some type of emergency plan in place is a really good idea. It might help put your mind at ease as well. I think you should also keep in mind that something like that most likely won’t happen. Things like that are always a possibility for people like us, but probably a smaller possibility  than you’re imagining. Sometimes it’s hard, but we have to try not to live in fear of all of things that might happen to us. I really hope you find some answers and some peace of mind. And sleep.

    • #21062
       DeAnn R 
      Keymaster

      I’m sorry you had to go through something like that Crystal. SMA can certainly have its scary moments. I remember when I was sick being afraid to fall asleep as well. It’s definitely an uneasy feeling, but it sounds like you did a great job staying calm.

      I noticed you have an ng tube. When I had one before I got my peg tube it did cause throat irritation. Didn’t really want the peg tube, but since they could do it without general anesthesia I decided to do it. Maybe something to talk to your doctors about.

      Kelly had some good suggestions. A suction machine may be useful. It’s basically like that thing at the dentist that sucks the extra spit from your mouth. Depending on your arm strength you can probably do it yourself. Do you use a BiPap? I know a lot of SMAers use one at night. I probably should too, but haven’t taken that step yet. An emergency alert button could be an option too if you think it would give you piece of mind.

      My next video coming out in November is an interview with Andrea Klein from Breathe with MD. Her website breathewithmd.org May be a good resource for you. `

      Hugs!

    • #21065
       Kevin Schaefer 
      Keymaster

      Crystal, just echoing what everyone else said here. Don’t ever feel ashamed to share stuff like this. We are here to support each other, and it’s ok to share heavy stuff. Thank you for your honesty here.

      Like Kelly said, Amazon Alexa devices help me a lot in these situations. They pick up your voice really well, so you don’t have to yell to call for parents/caregivers. I’d also recommend using a BiPAP if you don’t already. Do you see a pulmonologist? If so, ask them about it.

      These situations are definitely scary, but know that we’re here for you. Take care.

    • #21068
       Ryan Berhar 
      Keymaster

      Hey Crystal, I’m so sorry this happened. As the others have said, I think it’s imperative that you have a way to call for help. At my house, I have a baby monitor so my mom can hear me. I call it a man monitor haha.

    • #21072
       Crystal 
      Participant

      Thank you guys so much! I talk to my bro about this stuff usually but it really helps talking to people who actually KNOW what I’m talking about. My bro knows about it from a logical and scientific point of view and that helps too, but it’s not the same.

      My mom already talked to my pulmonologist and he basically just scared her by saying that I’m basically just losing the muscles in my throat to swallow and there’s nothing we can do about that, but before freaking out, she talked to my new primary care doctor who thinks it’s some kind of inflammation problem so she gave us some medicine for that. It seems to be working a little so far… She also put in an order for a new suction machine and we should be getting that soon, thank God. I have an Amazon Alexa, but it has a hard time understanding me. Like I’ll say, “Alexa, open Pandora” and she’ll say “playing Our Lawyers Made Us Change The Name Of This Song So We Don’t Get Sued by Fall Out Boy on Amazon Music” and I’ve never had her play that before (although that IS something I would listen to lol). So if I have a ton of spit in my mouth from not being able to swallow, how will I be able to get her to understand me? Also, how would she be able to help me anyway? Although, baby monitors don’t sound too bad – if I call them woman monitors. Lol. Thanks for that idea, Ryan. I’m hoping my primary care doctor is right and it’s just inflammation, but it’s good to be prepared for if it does happen and it’s serious. Also, it’s good to be prepared in case someone breaks in or something. Oh and I do have a BiPap machine. It actually makes it harder to swallow sometimes and dries my mouth out which hurts my throat, but without it, it’s hard to breathe.

      Thank you guys for listening to me and helping me feel better. It really means a lot.

    • #21073
       Kelly Miller 
      Participant

      Crystal, I was wondering (& I think DeAnn mentioned it) – have you thought about getting a peg tube in your belly instead of having the NG tube? That might be what’s causing the inflammation. Maybe your throat is just tired of it being there. They make the peg tubes so small now. In fact, I have a mic-key (which is like a little button that sticks out just above your skin) myself & I absolutely love it. So easy to change every few mos, & doesn’t cause any problems with getting stopped up. Might be something to consider. Alexa would help you by having yours right by your head & your mom having one in her room also. You can do what’s called “drop in” on her – you would say “Alexa, drop in on mom” & she would open the communication between the 2 devices. Then you could just talk freely. I understand what you’re saying about getting her to understand you. I had that same problem but she picked it up after I just kept training her during the daytime. It might be worth a try bc you already have one & your mom could use one for other things besides just you calling her. That was the cool part with us – my husband can play his music the rest of the time. You might try saying to Alexa – “Alexa, play Pandora (then wait until she asks you what you want her to play, then say the name of the song by itself).” I had to say things broken into short phrases & that seemed to help her understand a lot better.

      • This reply was modified 2 weeks, 3 days ago by  Kelly Miller.
    • #21075
       Halsey Blocher 
      Participant

      Crystal, I assume your bipap is connected to a humidifier. You might want to consider turning the temperature up a bit. I use a humidifier with my vent and having turned to low causes my throat to hurt and makes it hard to swallow. Having enough humidity will probably help soothe the inflammation.

    • #21079
       DeAnn R 
      Keymaster

      Hey Crystal, another thought popped into my head as I was thinking about you last night. Have you ever tried speech therapy? Something you might consider talking to your doctors about. When I started losing my swallow I was told the best way to maintain your swallow is to swallow. Hard to do when you can’t eat food, so they had me work with a speech therapist. Among other things they gave me exercises like sticking my tongue out as far as I can then swallow. Another one was to swallow part way, hold mid-swallow for a few seconds then finish the swallow. Also to say words with the letter “k” in them and exaggerate the “k” sound. Something about stimulating the back of the tongue muscle that helps with swallow. Of course with SMA you never want to go overboard with therapy, but it might help maintain where you’re at. I would do those exercises on my own, but also with a therapist using something called Vital Stim. It was a device they put on my neck to stimulate the muscles. Like I said something to talk to your doctors about if you think it could help.

      As far as the Alexa there are ways to activate it without needing to talk. I think you mentioned before you used google translate on your phone. You can also set up routines then activate them with your phone. So for example if your Mom had a Dot I think you could set up a routine to announce on the Dot you need assistance, then activate that routine with your phone. It’s been a while since I’ve done it, but pretty sure it would work. Of course that would mean sleeping with your phone and being able to reach it. If not it might work to play the music you want too.

      • #21098
         Halsey Blocher 
        Participant

        That’s a really great idea DeAnn! I utilized speech therapy for a while as well, and really benefited from it. Here’s other thing that my therapist tried that I felt really helped. She put together some lemonade mix with little or no sugar, and then use a small swab sponge rub some of the mixture onto my tongue and the roof of my mouth before I swallowed. It’s was very small amount so that I wouldn’t choke on it. Just enough to be able to taste. I never knew this before, but apparently really sour tastes help to trigger your swallow reflex. It probably sounds a bit unconventional but I think it definitely was something that helped strengthen my swallow muscles.

    • #21278
       Crystal 
      Participant

      Hey sorry it’s been so long since I replied. Haven’t been on due to family issues and my throat on top of that. But I’ve got some good news: we finally fixed my throat! Well it’s not hurting anymore and it’s not as hard to swallow anymore but still kinda hard to swallow. My mom changed my ng tube cuz it had been a while since she changed it. Also, when I said I use a BiPap machine, I should’ve been more specific. I use a Trilogy machine with a BiPap setting on it at night and a suck n puff setting during the day. The machine doesn’t come with a humidifier. We received a humidifier to plug up to it but we never really used it. But the other day I mentioned to my mom that Halsey had talked about a humidifier so she set it up and we think it’s helping too. Thank you Halsey!
      We tried using a peg tube before cuz I had one when I was still living with my birth mom and it had worked at that time but when we tried it again, it didn’t work. Now the ng tube is the only option. But I’m okay with that. I remember the peg tube and how much I hated it. At least the ng tube gives me less anxiety. Lol.
      I used to do speech therapy with a therapist as well but insurance won’t cover it anymore cuz I stopped getting better with it. Now I do speech therapy 4 times a day (two times on the weekend) on my own but that’s just the vocalizing part and it’s only to clear me out each day so people can understand me better when I talk.
      I’m glad we figured it out though. It feels good to be able to swallow without it hurting. Thank you all so much for helping me feel better and giving me advice!

      • #21280
         Kevin Schaefer 
        Keymaster

        Thanks for keeping us updated Crystal! Let us know if there’s any other way we can help.

      • #21287
         DeAnn R 
        Keymaster

        Glad to hear you’re feeling better.

    • #21291
       Alyssa Silva 
      Keymaster

      So glad to hear this, Crystal. Always here when you need it!

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