alyssa-silva
Forum Replies Created
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Hey Anna. Unfortunately, I can’t answer your question because I’ve never heard of these techniques. Are they supposed to help with swallowing? I’d love to hear more if you don’t mind!
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I keep forgetting to watch this movie. I’m going to make a note of it. The weather is cold and rainy here, a combination my body detests. So I’ve been spending lots of time at home under a blanket.
I’m not a big movie buff, but I did finally watch Barbie. If you can get through the first 15 minutes, it’s actually pretty good. Oppenheimer is coming to Peacock in February, and I’m excited to watch that too. What type of movies do you like to watch?
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Also, I’ve never tried care.com but it’s always in the back of my mind!
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I’m embarking on the hiring journey next month and am absolutely dreading it. I don’t know where to find caregivers anymore! Have you tried a newspaper ad?
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I’ve been meaning to read this book for quite some time now. I’d be down!
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I haven’t had much luck either but I also never really put too much time or effort into it. I’d give up after a few days. 😂 But I say go for it. Even if a relationship doesn’t come out of it, it’s great practice just talking to someone and holding a conversation with them. And it’s waaay less pressure than having to do it face to face.
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Hope you all have a happy and healthy holiday. We’ll see you in the new year. 🙂
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I used to have the opposite problem DeAnn. I’d go ten or more days without a bowel movement and always ran into issues as a result. It was awful. I’d get so sick.
But after becoming tube-fed and on a schedule with my feeds, I’ve been taking Miralax at the same time almost every day. (Some days I’m not home.) It has been life-changing as far as going to the bathroom goes. I usually take Miralax around 1pm and typically go to the bathroom at night. I randomly go in the morning sometimes, though, so it’s not as routine as I’d hoped. But I haven’t dealt with constipation in two years, so I’ll consider it a win.
As far as peeing goes, I’ve just gotta be the “hold-it” champ with that one.
Do you take Imodium at the same time every day?
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That would be my logic too!
So far so good. I haven’t been sick. However, I’m at the hospital frequently for appointments so I’m playing with fire. The hospitals are at max capacity in Boston with the flu and COVID. Makes me so nervous. 😬
How are you feeling post-bug? Even though those things only last 24 hours, I find it takes me forever to bounce back.
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You’re bringing back memories for me. I took a final exam in my freshman year of college, got in the car, and immediately developed a nasty cough. I could feel something was off during my exam but couldn’t pinpoint what exactly. The next day I was in the hospital with H1N1.
I was always excited to return to school and be with my friends. I was fortunate to be surrounded by a good group of girls who always had my back. Because of this, I didn’t really care what others thought. I’m sure there were whispers considering I was MIA for a few months at a time. But I was oblivious to it. Unfortunately, I couldn’t take the same precautions in college, but I managed to stay fairly healthy other than my bout with H1N1.
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I like how this site is laid out. Do you guys have any luck using it?
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Believe it or not, I’ve found my caregivers through word of mouth. I’d rather hire someone who knows a friend of a friend of a friend so I can get more information on them before I actually go through the hiring process. I’ve been lucky; however, finding people this way is getting harder and harder. I’m going to start looking again next month so fingers crossed. Rhode Island is small and everyone knows everyone so I’m cautiously optimistic. 😂
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Hi Ray! Welcome to the forums. I understand this must be an overwhelming time for your family. You may find some useful information in our Treatments and Research forum. Let us know if you have any questions. 🙂
smanewstoday.com
Treatments and Research – SMA News Today Forums
Treatments and Research – SMA News Today Forums
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I’ll have to look into these. Where do I find a cot mat?
I have a Tempurpedic mattress. Because I’m small and don’t weigh much, it doesn’t conform to my body. I’m too much of a lightweight to make an indentation, so it stays firm. I was looking online to see if a Tempurpedic pad existed but no such luck. The search continues. Thank you for the input!
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No worries! If you think of it, let me know.
Getting me comfortable is an art few people master. And when I get comfortable I usually become uncomfortable within 45 minutes. I can’t stay in the same position for too long. Otherwise, I start to feel pain. Does that happen to you?
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I’ve been working on a more go-with-the-flow attitude in recent years and I’m here to tell you it’s freeing. You’re not throwing in the towel at all. I get it.
Rest these days looks like sleeping in. It’s doing what’s required of me at work and learning to set boundaries. I tend to go above and beyond in everything I do but I try to dial it back at this time of year. It also looks like binge-watching TV and not beating myself up for it and calling myself lazy. My body needs physical rest too, so I like to lay still and not move my arms or talk too much– little things that drain a lot of my energy. Things like that.
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These are great resolutions! Though I am only half your age, I’m finding that as I get older my focus and attention goes more towards my loved ones as well.
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I use Neocate Splash. It’s an amino acid based formula.
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I’ve never been able to wear anything on my hands because it impairs my ability to drive. I use my index finger to push a mini joystick. Here’s a picture of how it works.
I’m thinking I could put a hand warmer under my left hand, though. That way, I could get some warmth. If you have any other ideas, I’d love to hear them!
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Interesting. I never knew this.
@deann-r We have the same wheelchair. Have you tried using this before?
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I love how you have a whole lineup. Usually I just wing it. My mom and I always watch the newer version of Miracle On 34th Street together. I’ve always wanted to see the original version though. Is it available to stream? White Christmas is another classic I haven’t seen yet. I’m slacking on my movie-watching this year too. I better get on it!
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Omg aloe juice! I used to drink that years ago. There was some health benefit from it that I was amped about, but now I don’t remember what it was haha. But you just reminded me I used to drink it. I might try it again. My tube clogs so easily so I’ll have to drink it by mouth. Does it taste good? I don’t remember.
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Ohh a massage seat sounds heavenly. Tell me more about this!
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That’s smart! Have you ever tried a heated blanket?