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Excessive Phlegm/Mucous
This has always been something I've had to deal with having SMA but within the last several years and the past few months, it has become much worse. Especially after eating or drinking and while trying to sleep. Often at night, I will wake up to choking and congestion from this.
I understand that this comes with the territory but could this be fatal? Can I end up drowning so to speak? If so, is it likely or probably not that likely to happen? I am 43 years old with SMA 2.
I’m sorry 😞 I know these types of changes can be stressful
I sleep with an aVAC most nights but even then I deal with some congestion
If Im concerned about mucus or build up in my sleep I will make… read more
Can Aspiration Be Fatal
How common or likely is it for people with SMA to die from aspirating?
I think it's best to ask your neurologist.
How Do You Manage Your Energy Throughout The Day?
I don't. There was a movie years ago set in a dystopian future. This guy with a disability lived in a world where most people were genetically modified to be perfect. One of the side stories was… read more
Wheelchair Recommendations????
Now I've a permobil f3 and this is great, but I don't like the speed limit for when you raise it so, what other chair would u recommend me?
I have a Quickie Q700 M and I love it! It can go a good speed while raised.
What Analogy Would You Use To Help Someone Understand What It’s Like To Live With SMA?
Have them sit in a chair. Tie their hands and feet to the chair and tell them to go about their day.
Do You Have A Technic To Feel Beter About The Look Of Your Body With All The Deformation Of Scoliosis?
This body shaming problem is for everyone i guess, not for people with sma only. But anyway I wanted to ask as a girl struggling with that feeling time to time
Well Personally I don't much like wearing anything that Clings to My Body, because then My Crooked Body really shows. So I tend to buy what I like, but I may buy just a tad bit larger just so it's not… read more
Have You Experienced Social Stigma Because Of SMA? How Have You Handled These Situations?
I never experienced much social stigma in school growing up...perhaps because i walled myself off from it staying blissfully unaware. Awareness really did not begin to seep in until college, but… read more
Have You Ever Tried To Make Plasticine Or Clay Figures?
Hi!!! I'm quite new here and maybe this is a bit of a random question but I've SMA 2 and recently I've been interested in making clay/plasticine figures and I'd like to know if there is anyone who has already tried to do something like that and if so, how was they experienced
Is the clay too hard to knead? Or maybe is there any type of dough softer?
Great, I'm going to try it! Thank u!
I also hear that polymer clay is soft, have u tried it?
Everyone Feels Sad Or Depressed Sometimes. What Do You Do To Boost Your Mood When You’re Feeling Down?
My son play with my Dogs and watch a lot of funny movies
Transfer To Shower Chair
Hi everyone. I have an urgent but somewhat embarrassing question to ask everyone For quite some time I have been desperately looking for attendant care. Currently my night attendant who has another client has been filling in for some time. My agency thinks they may have possibly found someone, but they are only willing to lift me with a hoyer lift. I have a hoyer lift, and while i have successfully used it to transfer from my wheelchair into bed, no one I have ever had out has figured out… read more
Wheelchairs lack a very important feature found on scooters, the tiller. For transfers I use a belt strap and use the tiller as support when doing a slide transfer. I have not needed a hoist. When… read more
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