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Post by blueskye101 on Jul 24, 2020 17:39:04 GMT -5
Breathing issues suck... This is how I manage my issues and I hope some of it helps! I have on average 64%-89% useable lung capacity. Usually I can’t get enough power to cough things up so I rely on allergy meds, a nebulizer, and inhaler as well as having someone cup my back (percussion vests do the same thing but they’re expensive) and like darthoso said, gravity. While someone cups my back, I make sure I’m either hanging off the bed or couch or have pillows (a wedge pillow would work well) that help gravity move things out while they cup and I cough. I hope you get some relief soon! I was thinking along these lines also. Coughing vests or coughing home machines if gets worse. I’m also all for natural remedies. Sinus rinse and herbs along with the meds. Hope so much you will stay out of the hospital. Also, just my 2 cents, mike and I have been here a long time and he would NOT say anything hurtful for the world.
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rayan
New Member
Posts: 44
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Post by rayan on Jul 25, 2020 13:31:30 GMT -5
Hello I have SMA and often I suffer from respiratory problems I can't advice you about drugs because I'm not a doctor But for me when I started having these symptoms I wash my mouth with water and salt and it's really give results I know maybe it can seem strange but this is an advice given from my doctor and I try it always and it gives positive result
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Post by Sir Paul on Jul 26, 2020 16:07:57 GMT -5
Hey man. My flavor of neuromuscular disease kinda falls in between MD and SMA. It's a rare one called Bethlem and for me has acted like a much slower Duchennes. I hit 30 and bam, my lung function dipped and I've been on supplemental O2 for about a decade now. I was really traumatic at the time because I didn't expect it. It tethered me to another piece of medical equipment in addition to my mobility scooter. Way early on a doctor suggested getting a trach. I never went back to that asshole. Now I'm 41 and managing as best as I can. The power I have over this disease is how I process it. What DOES NOT help is my anxiety. When it flares up, it absolutely has a compounding effect on my ability to breath. I don't know if you deal with anxiety, but if you do, address it. We can talk more about that issue if you want to, but I know that's not what this post is about. My main point, if I have one, is that you're not alone. I understand. A lot of us understand. You'll be alright, my friend. It sucks to get sick and for us it's EXTRA scary, but the immune system is awesome and it'll pass. Keep us posted.
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usdragon
Junior Member
Posts: 56
Gender: Male
Dev Status: Disabled Male
Relationship Status: Single
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Post by usdragon on Jul 27, 2020 14:07:01 GMT -5
Stay safe, my friend.
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Post by Sir Paul on Aug 2, 2020 14:33:31 GMT -5
What's the latest?
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Post by Dr. BiPAP Sachin on Aug 3, 2020 11:45:00 GMT -5
I'm still alive LOL! I have been switched to at least two weeks of levofloxacin, which doesn't affect my gastrointestinal tract. Also, I came off of tobramycin as it seemed to be exacerbating my cough secretions. I'm still coughing up phlegm, but not as frequently, so that's a plus.
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Post by Sir Paul on Aug 3, 2020 14:16:34 GMT -5
I'm still alive LOL! I have been switched to at least two weeks of levofloxacin, which doesn't affect my gastrointestinal tract. Also, I came off of tobramycin as it seemed to be exacerbating my cough secretions. I'm still coughing up phlegm, but not as frequently, so that's a plus. That sounds like a gradual improvement!
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Post by infinatedreams on Aug 3, 2020 17:13:58 GMT -5
Keep safe guys! I can't imagine the anxiety all this is causing you. It fucked me off to find out I'm officially 'vulnerable' something to do with paralysis also affecting the immune system (which I never knew!) Hang in there and hopefully things will get better 👍🏻😁
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